UBC Theses and Dissertations

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UBC Theses and Dissertations

The visiting spouses of extended care unit residents : an exploratory study of their experience Nunn, Kathleen Susan English 1986

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THE V I S I T I N G SPOUSES OF EXTENDED CARE UNIT RESIDENTS: AN EXPLORATORY STUDY OF THEIR EXPERIENCE by KATHLEEN SUSAN ENGLISH NUNN B.N., The U n i v e r s i t y o f M a n i t o b a , 1976 A T H E S I S SUBMITTED IN PARTIAL F U L F I L L M E N T OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES The S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF B R I T I S H COLUMBIA J u n e 1986 (c) K a t h l e e n S u s a n E n g l i s h Nunn, 1986 In p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of the requirements f o r an advanced degree a t the U n i v e r s i t y of B r i t i s h Columbia, I agree t h a t the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and study. I f u r t h e r agree t h a t p e r m i s s i o n f o r e x t e n s i v e copying o f t h i s t h e s i s f o r s c h o l a r l y purposes may be granted by the head of my department o r by h i s or her r e p r e s e n t a t i v e s . I t i s understood t h a t copying o r p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l not be allowed without my w r i t t e n p e r m i s s i o n . Department of kJu^^tA The U n i v e r s i t y o f B r i t i s h Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date \ J i A A l /3.198k ) E-6 n / a n i i A b s t r a c t The V i s i t i n g S p o u s e s o f E x t e n d e d C a r e U n i t R e s i d e n t s : An  E x p l o r a t o r y S t u d y o f T h e i r E x p e r i e n c e T h i s s t u d y f o c u s s e d on t h e n o n - i n s t i t u t i o n a l i z e d s p o u s e s o f e x t e n d e d c a r e u n i t (ECU) r e s i d e n t s u s i n g t h e UBC Model f o r N u r s i n g as t h e c o n c e p t u a l f r a m e w o r k . The p u r p o s e was t o e l i c i t t h e v i s i t i n g s p o u s e s ' p e r c e p t i o n s o f t h e i m p a c t on t h e i r l i v e s o f h a v i n g a s p o u s e i n an ECU, t h e c o p i n g b e h a v i o u r s t h e y u s e d , and t h e f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g t h e i r c o p i n g b e h a v i o u r s . D a t a were c o l l e c t e d t h r o u g h r e l a t i v e l y u n s t r u c t u r e d i n t e r v i e w s w i t h n i n e v i s i t i n g s p o u s e s . The t h r e e women and s i x men were m a r r i e d t o d i s a b l e d s p o u s e s who had l i v e d i n t h e ECU f o r an a v e r a g e o f t h r e e y e a r s . D a t a a n a l y s i s p r o c e e d e d t h r o u g h t h e c o n s t a n t c o m p a r a t i v e m e t h o d . P a r t i c i p a n t s saw t h e i r s p o u s e s ' i n s t i t u t i o n a l i z a t i o n as p a r t o f a p r o c e s s o f c h a n g e b e g i n n i n g b e f o r e t h e a c t u a l a d m i s s i o n . The i m p a c t o f h a v i n g a s p o u s e i n an ECU was f e l t by p a r t i c i p a n t s as one o f e n d u r i n g l o n e l i n e s s and c o n t i n u i n g p r e o c c u p a t i o n w i t h t h e i r d i s a b l e d s p o u s e s . L o n e l i n e s s was i n t e r p r e t e d t o a r i s e f r o m t h e a b s e n c e o f i n t i m a c y i n t h e i r l i v e s and t h e i r p r e o c c u p a t i o n , f r o m c o n t i n u i n g c a r i n g f o r and a t t a c h m e n t t o t h e i r d i s a b l e d s p o u s e s . i i 1 The p a r t i c i p a n t s d e s c r i b e d a v a r i e t y o f c o p i n g b e h a v i o u r s and i n f l u e n c i n g f a c t o r s . T h e s e were c l u s t e r e d a r o u n d f o u r a s p e c t s o f t h e i r l i v e s : t h e d i s a b l e d s p o u s e ; p a i n f u l e m o t i o n s ; t h e r o l e s f o r m e r l y p e r f o r m e d by t h e d i s a b l e d s p o u s e ; and s o c i a l p a r t i c i p a t i o n . T h r e e c o r e c o n c e p t s e m e r g e d f r o m t h e d a t a . T h e s e w e r e : p e r c e i v i n g m u t u a l i t y i n i n t e r a c t i o n s w i t h t h e i r d i s a b l e d s p o u s e s ; h u m a n i z i n g t h e i n s t i t u t i o n ; and i n t e g r a t i n g h a v i n g a s p o u s e i n an ECU i n t o t h e c o n t i n u i t y o f t h e i r l i v e s . The l a s t c o r e c o n c e p t had t h e g r e a t e s t e x p l a n a t o r y p o w e r . N u r s e s c a n f a c i l i t a t e t h e d e v e l o p m e n t o f t h e s e t h r e e c o n c e p t s by r e s p e c t i n g t h e i n d i v i d u a l i t y o f r e s i d e n t s and v i s i t i n g s p o u s e s and by e n s u r i n g t h a t c a r i n g and c o m p e t e n t n u r s i n g c a r e i s p r o v i d e d . O t h e r i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e and e d u c a t i o n as w e l l as s u g g e s t i o n s f o r f u r t h e r r e s e a r c h a r e p r e s e n t e d . i v T a b l e o f C o n t e n t s A b s t r a c t i i T a b l e o f C o n t e n t s i v A c k n o w l e d g e m e n t s v i CHAPTER 1 INTRODUCTION 1 B a c k g r o u n d and S i g n i f i c a n c e 1 C o n c e p t u a l Model 5 S t a t e m e n t o f t h e P r o b l e m 6 P u r p o s e o f t h e S t u d y 7 D e f i n i t i o n o f T e r m s 7 L i m i t a t i o n s o f t h e S t u d y 8 A s s u m p t i o n s 9 O r g a n i z a t i o n o f t h e R e p o r t 9 CHAPTER 2 LITERATURE REVIEW 10 V i s i t i n g S p o u s e s 10 I m p a c t , C o p i n g B e h a v i o u r s , and I n f l u e n c i n g F a c t o r s 16 A p p r o a c h e s t o U n d e r s t a n d i n g M a r i t a l D i s r u p t i o n s 22 M a r i t a l D i s r u p t i o n as a L o s s 23 M a r i t a l D i s r u p t i o n as a M a j o r L i f e C h a n g e 26 Summary 29 CHAPTER 3 METHODOLOGY 32 The R e s e a r c h D e s i g n and t h e UBC Model f o r N u r s i n g 32 S e t t i n g 33 S e l e c t i o n o f t h e Sample 34 S a m p l i n g C r i t e r i a 34 S a m p l e S i z e 35 S e l e c t i o n P r o c e d u r e 36 D a t a C o l l e c t i o n 36 D a t a C o l l e c t i o n P r o c e d u r e 38 D a t a A n a l y s i s 39 E t h i c a l C o n s i d e r a t i o n s 42 Summary 43 V CHAPTER 4 FINDINGS AND INTERPRETATION 44 The S a m p l e 45 B e c o m i n g a V i s i t i n g S p o u s e 47 M a r r i e d L i f e 47 O n s e t o f t h e D i s a b i l i t y 48 The C a r e g i v i n g P e r i o d 49 The D e c i s i o n t o I n s t i t u t i o n a l i z e 52 B e i n g a V i s i t i n g S p o u s e 57 I m p a c t on T h e i r L i v e s 57 L o n e l i n e s s 57 P r e o c c u p a t i o n w i t h t h e D i s a b l e d S p o u s e 64 C l u s t e r s o f C o p i n g B e h a v i o u r s and I n f l u e n c i n g F a c t o r s 74 The D i s a b l e d S p o u s e 74 P a i n f u l E m o t i o n s 81 The R o l e s F o r m e r l y P e r f o r m e d by t h e D i s a b l e d S p o u s e 91 S o c i a l P a r t i c i p a t i o n 93 C o r e C o n c e p t s 97 P e r c e i v i n g M u t u a l i t y i n t h e I n t e r a c t i o n 97 H u m a n i z i n g t h e I n s t i t u t i o n 98 I n t e g r a t i n g T h e i r E x p e r i e n c e i n t o t h e C o n t i n u i t y o f T h e i r L i v e s 100 CHAPTER 5 SUMMARY, CONCLUSIONS, AND IMPLICATIONS 103 Summary 103 C o n c l u s i o n s 106 I m p l i c a t i o n s f o r N u r s i n g P r a c t i c e 108 I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n 112 I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h 113 F o o t n o t e s 116 B i b i l o g r a p h y 117 A p p e n d i c e s A p p e n d i x A 126 A p p e n d i x B 127 A p p e n d i x C 129 A p p e n d i x D 130 v i A c k n o w l e d g e m e n t s I w o u l d l i k e t o t h a n k Rose M u r a k a m i , J o - A n n P e r r y , S h e i l a S t a n t o n , and D r . M a r i l y n W i l l m a n f o r t h e i r e f f o r t s i n g u i d i n g me t h r o u g h t h e r e s e a r c h p r o c e s s . I w o u l d a l s o l i k e t o t h a n k my m o t h e r , M r s . Anna B. Nunn, and my m o t h e r - i n - l a w , M r s . A l i c e E . B u l l o c k , f o r t h e i r e m o t i o n a l and f i n a n c i a l s u p p o r t . My h u s b a n d , D a v i d B u l l o c k , i s e s p e c i a l l y a p p r e c i a t e d f o r h i s u n w a v e r i n g f a i t h i n me. F i n a l l y , b u t m o s t i m p o r t a n t l y , I w o u l d l i k e t o e x p r e s s my a p p r e c i a t i o n t o t h e men and women who p a r t i c i p a t e d i n t h i s s t u d y . I f e e l p r i v i l e g e d t o h a v e been a l l o w e d t o h e a r t h e i r t h o u g h t s and f e e l i n g s . T h e i r i n s i g h t s h a v e n o t o n l y e n r i c h e d n u r s e s ' u n d e r s t a n d i n g o f t h e i r e x p e r i e n c e b u t h a v e a l s o e n r i c h e d my own l i f e . 1 CHAPTER ONE I n t r o d u c t i on A m a r i t a l r e l a t i o n s h i p i s p i v o t a l t o t h e l i v e s o f many p e o p l e . The e l d e r l y * may p l a c e a s p e c i a l v a l u e on t h e i r m a r r i a g e s b e c a u s e " o f an a w a r e n e s s t h a t t h e i r u n i o n c o n t i n u e s i n t h e f a c e o f t h e u n c e r t a i n t y o f l i f e and t h e r e a l i t y o f d e a t h " ( A b u - L a b a n , 1980, p. 1 2 6 ) . T h e i r s p o u s e s a r e a s o u r c e o f c o n t i n u i t y t h r o u g h t h e y e a r s - - a l i n k b e t w e e n t h e i r p a s t , p r e s e n t , and f u t u r e . In m a r r i a g e s o f l o n g d u r a t i o n , e l d e r l y s p o u s e s have o f t e n d e v e l o p e d an i n t e r d e p e n d e n c e t h a t h e l p s them t o c o p e w i t h p s y c h o l o g i c a l and p h y s i c a l d i s a b i l i t i e s . The d e a t h o f a s p o u s e r a t h e r t h a n d i v o r c e d i s r u p t s t h e v a s t m a j o r i t y o f m a r r i a g e s i n o l d age (Nye & B e r a r d o , 1 9 7 3 ) , b u t t h e r e i s a n o t h e r f o r m o f m a r i t a l d i s r u p t i o n . T h i s e x p l o r a t o r y s t u d y f o c u s e s on e l d e r l y p e o p l e whose s p o u s e s l i v e i n l o n g - t e r m c a r e i n s t i t u t i o n s . T h e i r m a r r i a g e s a r e d i s r u p t e d , n o t by d e a t h o r d i v o r c e , b u t by t h e i r s p o u s e s ' n e e d f o r i n s t i t u t i o n a l c a r e . B a c k g r o u n d and S i g n i f i c a n c e A t l e a s t 2.3 m i l l i o n C a n a d i a n s o r 9.7% o f t h e p o p u l a t i o n were 65 y e a r s o f age and o v e r i n 1981 ( S t a t i s t i c s C a n a d a , 1 9 8 4 ) . By t h e y e a r 2025 t h e i r 2 numbers a r e e x p e c t e d t o i n c r e a s e t o a b o u t 5.5 m i l l i o n o r 19% o f t h e p o p u l a t i o n ( S t a t i s t i c s C a n a d a , 1 9 8 2 ) . M o s t e l d e r l y l i v e i n p r i v a t e d w e l l i n g s b u t a s m a l l p e r c e n t a g e a r e r e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s . The e x a c t f i g u r e i s n o t known b e c a u s e o f d i s a g r e e m e n t a b o u t what c o n s t i t u t e s l o n g - t e r m c a r e s e t t i n g s and a b o u t t h e p o i n t a t w h i c h a p a t i e n t a c q u i r e s l o n g - t e r m c a r e s t a t u s ( S t a t i s t i c s C a n a d a , 1 9 8 2 ) . An e s t i m a t e may be o b t a i n e d f r o m r e c e n t c e n s u s d a t a s t a t i n g t h a t 158,000 o r a b o u t 7% o f t h e e l d e r l y p o p u l a t i o n l i v e i n i n s t i t u t i o n s and n u r s i n g homes ( S t a t i s t i c s C a n a d a , 1 9 8 4 ) . One m i g h t t h e n i n f e r t h a t few o f t h e e l d e r l y become i n s t i t u t i o n a l i z e d , b u t l o n g i t u d i n a l s t u d i e s r e v e a l t h a t t h e e l d e r l y h ave a 25% ( P a l m o r e , 1976) o r e v e n a 50% ( M c C o n n e l , 1984) c h a n c e o f l i v i n g i n l o n g - t e r m c a r e i n s t i t u t i o n s b e f o r e t h e y d i e . A l t h o u g h t h e w i dowed and t h e n e v e r - m a r r i e d c o n s t i t u t e m o st o f t h e i n s t i t u t i o n a l i z e d p o p u l a t i o n , a c e r t a i n p r o p o r t i o n a r e s t i l l m a r r i e d . A m e r i c a n d a t a s u g g e s t t h a t 14% o f t h e r e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s a r e m a r r i e d ( L o c k e r , 1 9 8 1 ) . The same f i g u r e i s o b t a i n e d by e x t r a p o l a t i n g f r o m C a n a d i a n d a t a on e l d e r l y r e s i d e n t s o f c o l l e c t i v e d w e l l i n g s ( S t a t i s t i c s C a n a d a , 1 9 8 3 ) . As more C a n a d i a n s s u r v i v e i n t o o l d a g e , i t i s r e a s o n a b l e t o assume t h a t t h e p r o p o r t i o n o f m a r r i e d r e s i d e n t s w i l l i n c r e a s e . I n d e e d , t h i s t r e n d has a l r e a d y b e e n n o t e d i n t h e l i t e r a t u r e ( L o c k e r , 1976; H a l b f i n g e r , 3 1 9 7 9 ) . The n o n - i n s t i t u t i o n a l i z e d o r v i s i t i n g s p o u s e s o f p e o p l e l i v i n g i n l o n g - t e r m c a r e i n s t i t u t i o n s f o r m a s u b s t a n t i a l g r o u p - - a g r o u p t h a t n u r s e s w i l l s e e more o f i n t h e f u t u r e . The v i s i t i n g s p o u s e s ' p r e s e n c e and a c t i v i t i e s b e n e f i t t h e i r d i s a b l e d s p o u s e s ' l i v e s i n t h e i n s t i t u t i o n . The l i t e r a t u r e s u g g e s t s t h a t f a m i l y members h e l p t o h u m a n i z e t h e i n s t i t u t i o n ( Bowker, 1982) and t o p r e v e n t t h e i s o l a t i o n o f r e s i d e n t s f r o m t h e c o m m u n i t y and f a m i l y l i f e ( D o b r o f & L i t w a k , 1 9 7 7 ) . T h e y a l s o p r o v i d e m a t e r i a l , s o c i a l , a n d e m o t i o n a l " e x t r a s " u n o b t a i n a b l e f r o m t h e i n s t i t u t i o n ( D o b r o f * L i t w a k , 1977) and c o n t r i b u t e t o i n d i v i d u a l i z i n g r e s i d e n t c a r e ( S t r o w & M a c k r e t h , 1 9 7 7 ) . V i s i t i n g s p o u s e s , o f a l l f a m i l y members, a r e t h e c l o s e s t e m o t i o n a l t i e s f o r m a r r i e d r e s i d e n t s and i n t h i s r e s e a r c h e r ' s e x p e r i e n c e t h e y a r e u s u a l l y t h e most f r e q u e n t and c o n c e r n e d v i s i t o r s . The q u a n t i t y and q u a l i t y o f t h e i r i n v o l v e m e n t d e p e n d s , i n p a r t , on t h e s t a f f ' s a t t i t u d e and a p p r o a c h t o f a m i l i e s . The r e l a t i o n s h i p b e t w e e n s t a f f and f a m i l y members c a n b,e f r a u g h t w i t h c o n f l i c t i f t h e s t a f f v i e w f a m i l y members as i n t e r l o p e r s i n t h e i n s t i t u t i o n ( D o b r o f & L i t w a k , 1977; S t r o w & M a c k r e t h , 1 9 7 7 ) . B e c a u s e r e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s u s u a l l y l i v e t h e r e u n t i l t h e y d i e , t h e i n v o l v e m e n t o f f a m i l y members i s a l s o l o n g - t e r m . I d e a l l y , s t a f f and f a m i l y members s e e 4 t h e m s e l v e s as p a r t n e r s i n a j o i n t e n t e r p r i s e ( S t r o w & M a c k r e t h , 1 9 7 7 ) . The i n t e g r i t y o f t h i s p a r t n e r s h i p r e s t s on t h e u n d e r s t a n d i n g and s u p p o r t r e c e i v e d by f a m i l y members f r o m s t a f f . Of a l l h e a l t h c a r e p r o f e s s i o n a l s , n u r s e s i n t e r a c t m o s t f r e q u e n t l y w i t h r e s i d e n t s and f a m i l i e s . T h e r e f o r e , t h e y h a v e many o p p o r t u n i t i e s t o p r o v i d e v i s i t i n g s p o u s e s w i t h u n d e r s t a n d i n g and s u p p o r t . In o r d e r t o do t h i s n u r s e s n e e d t o know s o m e t h i n g o f what i t i s l i k e t o h a v e a s p o u s e i n an i n s t i t u t i o n . Y e t , t h i s r e s e a r c h e r ' s r e v i e w o f t h e l i t e r a t u r e and e x p e r i e n c e i n a l o n g - t e r m c a r e i n s t i t u t i o n r e v e a l e d t h a t l i t t l e i s known a b o u t v i s i t i n g s p o u s e s . A number o f s t u d i e s and p a p e r s d e a l t w i t h t h e f a m i l y o f t h e i n s t i t u t i o n a l i z e d e l d e r l y w i t h o u t d i f f e r e n t i a t i n g b e t w e e n v i s i t i n g s p o u s e s and o t h e r v i s i t i n g f a m i l y members. O t h e r s c o n c e n t r a t e d on t h e a d u l t c h i l d r e n o f r e s i d e n t s . O n l y a few f o c u s e d on v i s i t i n g s p o u s e s a l o n e and m o s t o f t h e s e were a c c o u n t s o f s u p p o r t g r o u p s f o r m e d by s o c i a l w o r k e r s . T h u s , t h e r e i s l a c k o f e m p i r i c a l r e s e a r c h on t h e e x p e r i e n c e o f v i s i t i n g s p o u s e s t h a t c a n be u s e d t o e n r i c h n u r s i n g p r a c t i c e . The b a s i c q u e s t i o n , "What i s i t l i k e t o h a v e a s p o u s e i n a l o n g - t e r m c a r e i n s t i t u t i o n ? " , r e m a i n s u n a n s w e r e d . 5 C o n c e p t u a l Model The U n i v e r s i t y o f B r i t i s h C o l u m b i a (UBC) Model f o r N u r s i n g ( 1 9 8 0 ) p r o v i d e d t h e p e r s p e c t i v e f o r s t u d y i n g t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e . The UBC Model ( 1 9 8 0 ) r e g a r d s t h e i n d i v i d u a l as a b e h a v i o u r a l s y s t e m w h i c h i s c o n t i n u a l l y r e a c t i n g t o and a c t i n g on i t s e n v i r o n m e n t . A c c o r d i n g t o t h e model a b e h a v i o u r a l s y s t e m c o n s i s t s o f n i n e s u b s y s t e m s , e a c h i n t e r a c t i n g and i n t e r d e p e n d e n t w i t h t h e o t h e r s u b s y s t e m s . B e h a v i o u r a l s y s t e m b a l a n c e r e s u l t s when t h e " s u b s y s t e m s a r e i n a b a l a n c e d r e l a t i o n s h i p w i t h e a c h o t h e r and t h e s y s t e m i s i n a b a l a n c e d r e l a t i o n s h i p w i t h i t s e n v i r o n m e n t " (UBC M o d e l , 1980, p. 3 ) . E a c h s u b s y s t e m i s r e s p o n s i b l e f o r t h e s a t i s f a c t i o n o f one b a s i c human n e e d and i s a s s o c i a t e d w i t h a n e e d - r e l a t e d g o a l ( s e e A p p e n d i x A ) . The i n d i v i d u a l e x p e r i e n c e s t h e s e n e e d s as t e n s i o n s . The b e h a v i o u r a l s y s t e m a t t e m p t s t o r e d u c e t e n s i o n s by t h e u s e o f c o p i n g b e h a v i o u r s . When c o p i n g b e h a v i o u r s a r e s u i t a b l e , t e n s i o n s a r e r e d u c e d and n e e d s a r e s a t i s f i e d . When c o p i n g b e h a v i o u r s a r e u n s u i t a b l e , t e n s i o n s i n c r e a s e and n e e d s a r e n o t s a t i s f i e d . B e h a v i o u r a l s y s t e m i m b a l a n c e r e s u l t s , t h r e a t e n i n g t h e i n d i v i d u a l ' s g r o w t h o r s u r v i v a l . C o p i n g b e h a v i o u r s a r e d e t e r m i n e d by t h e i n d i v i d u a l ' s c o g n i t i v e ( t h i n k i n g and k n o w i n g ) and e x e c u t i v e ( d o i n g ) a b i l i t i e s and a r e i n f l u e n c e d p o s i t i v e l y o r n e g a t i v e l y by 6 f o r c e s i n t e r n a l and e x t e r n a l t o t h e s y s t e m . F o r c e s "may a r i s e f r o m t h e n e e d s and a b i l i t i e s o f t h e s u b s y s t e m s ( p e r s o n a l ) ; f r o m o t h e r b e h a v i o u r a l s y s t e m s ( s o c i o c u l t u r a l ) ; o r f r o m i m p e r s o n a l a s p e c t s o f a s i t u a t i o n ( i m p e r s o n a l ) " (UBC M o d e l , 1980, p. 8 ) . A c o p i n g b e h a v i o u r i n one s u b s y s t e m may a c t as a f o r c e i n a n o t h e r . U s i n g t h i s f r a m e w o r k , t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e i s s e e n p r i m a r i l y as a s o c i o c u l t u r a l f o r c e a f f e c t i n g o r i n f l u e n c i n g t h e v i s i t i n g s p o u s e ' s s a t i s f a c t i o n o f b a s i c human n e e d s . I f t e n s i o n s i n c r e a s e as a r e s u l t o f h a v i n g a s p o u s e i n an i n s t i t u t i o n , t h e v i s i t i n g s p o u s e u s e s c o p i n g b e h a v i o u r s , s u i t a b l e o r u n s u i t a b l e , i n an a t t e m p t t o s a t i s f y b a s i c human n e e d s a n d , t h u s , t o m a i n t a i n b e h a v i o u r a l s y s t e m b a l a n c e . F a c t o r s ( f o r c e s and a b i l i t i e s ) i n f l u e n c e o r d e t e r m i n e t h e e f f i c a c y o f t h e s e c o p i n g b e h a v i o u r s . S t a t e m e n t o f t h e P r o b l e m V i s i t i n g s p o u s e s f o r m an i n c r e a s i n g l y s i g n i f i c a n t g r o u p o f f a m i l y members s e e n i n l o n g - t e r m c a r e i n s t i t u t i o n s . In o r d e r t o e m p a t h i z e w i t h them and t o s u p p o r t t h e i r i n v o l v e m e n t , n u r s e s n e e d t o know more a b o u t t h e i r e x p e r i e n c e . S p e c i f i c a l l y , t h i s s t u d y i s c o n c e r n e d w i t h how t h e i r l i v e s a r e a f f e c t e d by h a v i n g a s p o u s e i n an e x t e n d e d c a r e u n i t ( E C U ) . 7 P u r p o s e o f t h e S t u d y The p u r p o s e o f t h i s s t u d y i s t o e x p l o r e and d e s c r i b e ( a ) t h e i m p a c t on t h e v i s i t i n g s p o u s e ' s l i f e o f h a v i n g a s p o u s e i n an e x t e n d e d c a r e u n i t , ( b ) t h e c o p i n g b e h a v i o u r s u s e d by t h e v i s i t i n g s p o u s e , and ( c ) t h e f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g c o p i n g b e h a v i o u r s . D e f i n i t i o n o f T e r m s 1. I m p a c t on t h e v i s i t i n g s p o u s e ' s l i f e — i n f l u e n c e on t h e v i s i t i n g s p o u s e as a b e h a v i o u r a l s y s t e m . 2. B a s i c human n e e d — " a f u n d a m e n t a l r e q u i r e m e n t o f s u r v i v a l a nd g r o w t h o f t h e b e h a v i o u r a l s y s t e m " (UBC, 1980, p. 7 ) . 3. C o p i n g b e h a v i o u r — " a r e s p o n s e t h a t i n d i c a t e s t h e way i n w h i c h a s u b s y s t e m i s a t t e m p t i n g t o s a t i s f y a b a s i c human n e e d " (UBC, 1980, p. 7) and m a i n t a i n b e h a v i o u r a l s y s t e m b a l a n c e . C o p i n g b e h a v i o u r s may be s u i t a b l e o r u n s u i t a b l e . 4. F a c t o r s — t h e c o g n i t i v e and e x e c u t i v e a b i l i t i e s d e t e r m i n i n g c o p i n g b e h a v i o u r s ; and t h e i m p e r s o n a l , p e r s o n a l , and s o c i o c u l t u r a l f o r c e s i n f l u e n c i n g t h e c o p i n g b e h a v i o u r s . 5. E x t e n d e d c a r e u n i t ( E C U ) — " A n e x t e n d e d c a r e h o s p i t a l o r u n i t p r o v i d e s a s p e c i a l t y p e o f p r o g r a m f o r t h o s e who, b e c a u s e o f i l l n e s s o r m a r k e d p h y s i c a l o r 8 f u n c t i o n a l d i s a b i l i t y , r e q u i r e l o n g - t e r m h o s p i t a l i z a t i o n .... T w e n t y - f o u r h o u r c o v e r a g e by p r o f e s s i o n a l n u r s i n g s t a f f i s p r o v i d e d " ( H o s p i t a l P r o g r a m s , 1984, p. 2 ) . 6. V i s i t i n g s p o u s e - - t h e h u s b a n d o r w i f e who c o n t i n u e s t o l i v e i n h i s o r h e r own d w e l l i n g a f t e r t h e a d m i s s i o n o f a s p o u s e t o an ECU and who v i s i t s t h e d i s a b l e d s p o u s e i n t h e ECU a t l e a s t o n c e e v e r y two w e e k s . L i m i t a t i o n s o f t h e S t u d y 1. The p a r t i c i p a n t s i n t h i s s t u d y were t h o s e s p o u s e s who r e g u l a r l y v i s i t e d t h e i r i n s t i t u t i o n a l i z e d s p o u s e s . T h u s , s p o u s e s who v i s i t e d i n f r e q u e n t l y , w h e t h e r b e c a u s e t h e y l i v e a t a g r e a t d i s t a n c e f r o m t h e ECU o r b e c a u s e t h e y a r e e m o t i o n a l l y o r p h y s i c a l l y u n a b l e t o c o p e w i t h v i s i t i n g , were e x c l u d e d . 2. The s t u d y u s e d a c o n v e n i e n c e s a m p l e o f v i s i t i n g s p o u s e s drawn f r o m one ECU. T h e r e f o r e , t h e r e s u l t s may n o t be r e p r e s e n t a t i v e o f t h e g e n e r a l p o p u l a t i o n o f v i s i t i n g s p o u s e s . 9 A s s u m p t i o n s T h i s s t u d y was b a s e d on t h e a s s u m p t i o n t h a t t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e s i g n i f i c a n t l y a f f e c t s t h e v i s i t i n g s p o u s e . O r g a n i z a t i o n o f t h e R e p o r t In t h i s c h a p t e r , t h e p r o b l e m and t h e p u r p o s e o f t h e s t u d y h a v e been i n t r o d u c e d . In a d d i t i o n , t h e c o n c e p t u a l m o d e l , a s s u m p t i o n s , and l i m i t a t i o n s o f t h e s t u d y were p r e s e n t e d . The l i t e r a t u r e i s r e v i e w e d i n C h a p t e r Two. C h a p t e r T h r e e c o n t a i n s t h e d e s c r i p t i o n o f t h e m e t h o d o l o g y o f t h e s t u d y . The f i n d i n g s and i n t e r p r e t a t i o n o f t h e d a t a a r e p r e s e n t e d i n C h a p t e r F o u r and t h e summary, c o n c l u s i o n s , and i m p l i c a t i o n s o f t h e s t u d y f o r m C h a p t e r F i v e . 10 CHAPTER TWO L i t e r a t u r e R e v i e w The p u r p o s e o f t h i s c h a p t e r i s t o p r e s e n t t h e r e s e a r c h and t h e o r y w h i c h f o r m e d t h e b a c k g r o u n d f o r t h i s s t u d y . To t h a t e n d , t h e c h a p t e r i s d i v i d e d i n t o two s e c t i o n s . The f i r s t s e c t i o n r e v i e w s and c r i t i c a l l y e x a m i n e s t h e l i t e r a t u r e on v i s i t i n g s p o u s e s and t h u s p l a c e s t h i s s t u d y w i t h i n t h e c o n t e x t o f c u r r e n t r e s e a r c h . The s e c o n d s e c t i o n p r e s e n t s two d i f f e r e n t t h e o r e t i c a l a p p r o a c h e s t o u n d e r s t a n d i n g t h e i m p a c t on t h e v i s i t i n g s p o u s e ' s l i f e o f h a v i n g a s p o u s e i n an i n s t i t u t i o n . V i s i t i n g S p o u s e s Two r e s e a r c h s t u d i e s were l o c a t e d t h a t d e a l t w i t h a s p e c t s o f t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e . B r a n d w e i n , P o s t o f f , and S t e i n b e r g ( 1 9 7 9 ) , i n an u n p u b l i s h e d s t u d y , e x a m i n e d t h e r o l e and l i f e s t y l e c h a n g e s f a c e d by 18 2 v i s i t i n g s p o u s e s . Open and c l o s e d e n d e d q u e s t i o n s e l i c i t e d i n f o r m a t i o n on t h e r o l e a s s u m e d by v i s i t i n g s p o u s e s i n t h e i n s t i t u t i o n , t h e r o l e w h i c h e v o l v e d f o r them i n t h e c o m m u n i t y , and t h e i r p e r c e p t i o n s o f t h e i r m a r r i a g e s s i n c e t h e s e p a r a t i o n f r o m t h e i r d i s a b l e d s p o u s e s . 11 E l e v e n o f t h e s a m p l e had c a r e d f o r t h e i r d i s a b l e d s p o u s e s a t home f o r more t h a n two and o n e - h a l f y e a r s p r i o r t o i n s t i t u t i o n a l i z a t i o n . E v e n i n t h e i n s t i t u t i o n , 13 v i s i t i n g s p o u s e s p r o v i d e d p h y s i c a l c a r e . A l t h o u g h more t h a n o n e - h a l f o f t h e s a m p l e s a i d t h e y c o n t i n u e d t o g i v e c a r e b e c a u s e o f d i s s a t i s f a c t i o n w i t h i n s t i t u t i o n a l c a r e , t h e a u t h o r s f e l t t h a t t h e c o m m u n i t y s p o u s e ' s c o n t i n u e d i n v o l v e m e n t i n t h e p h y s i c a l c a r e c o u l d be a t t r i b u t e d t o t h e l a c k o f a c c e p t a n c e o f t h e p l a c e m e n t , t h e i n a b i l i t y t o c o p e w i t h t h e i r own f e e l i n g s o f g u i l t and a n x i e t y , and t h e t r a n s i t i o n f r o m p r i m a r y c a r e t a k e r t o a s e c o n d a r y p o s i t i o n . A m a j o r f a c t o r m o t i v a t i n g t h e c o m m u n i t y s p o u s e was t h e n e e d t o f e e l n e e d e d and t o be p e r c i e v e d as a c a r i n g , d e v o t e d p a r t n e r by o t h e r s ( p . 6 ) . A l l b u t one o f t h e v i s i t i n g s p o u s e s f e l t t h a t v i s i t i n g was i m p o r t a n t t o t h e i r p a r t n e r s ' p s y c h o - s o c i a l w e l l - b e i n g . The a u t h o r s i n f e r r e d t h a t v i s i t i n g s p o u s e s f a c e d an i d e n t i t y c r i s i s i n t h e c o m m u n i t y . I t was e v i d e n t t h a t many c o u l d i d e n t i f y w i t h c o n s e q u e n c e s o f w i d o w h o o d s u c h as t h e l o s s o f c o m p a n i o n s h i p and l o n e l i n e s s b u t , u n l i k e widows o r w i d o w e r s , v i s i t i n g s p o u s e s were n o t a b l e t o s t a r t a new l i f e o r t o f o r m new r e l a t i o n s h i p s . T h e y f e l t i l l a t e a s e w i t h f r i e n d s , e s p e c i a l l y m a r r i e d f r i e n d s . I t was d e t e r m i n e d t h a t v i s i t i n g s p o u s e s were " s u s p e n d e d b e t w e e n t h e s t a t e o f m a r r i a g e and w i d o w h o o d , s t r u g g l i n g t o c o p e w i t h a new r o l e . . . t h e ' m a r r i e d w i d o w ( e r ) ' " ( p . 7 ) . 12 To t h e a u t h o r s ' s u r p r i s e and c o n c e r n , 16 o f t h e 18 v i s i t i n g s p o u s e s had n o t made p l a n s f o r t h e f u t u r e e v e n t h o u g h t h e i r p a r t n e r s had be e n d i s a b l e d f o r y e a r s . T h e y saw no f u t u r e f o r t h e m s e l v e s and e x p r e s s e d f e e l i n g s o f h e l p l e s s n e s s and h o p e l e s s n e s s . The f o r m a t i o n o f s u p p o r t g r o u p s f o r v i s i t i n g s p o u s e s was a recommended i n t e r v e n t i o n . L i n n and G u r e l ( 1 9 6 9 ) s t u d i e d t h e a t t i t u d e s o f 80 women whose h u s b a n d s were i n s t i t u t i o n a l i z e d i n n u r s i n g homes. The a t t i t u d e s o f t h e w i v e s were c l a s s i f i e d as p o s i t i v e o r n e g a t i v e i m m e d i a t e l y b e f o r e t h e a d m i s s i o n o f t h e i r h u s b a n d s . Two mon t h s l a t e r t h e i r a t t i t u d e s were a s s e s s e d a g a i n . P o s i t i v e c h a n g e i n a t t i t u d e was b e s t p r e d i c t e d by h i g h r a t i n g s on t h e c l e a n l i n e s s o f t h e n u r s i n g home, t h e a c t i v i t i e s a v a i l a b l e , t h e b u i l d i n g i t s e l f , a nd h a v i n g had l i t t l e p r e v i o u s e x p e r i e n c e w i t h n u r s i n g homes. N e g a t i v e c h a n g e was a s s o c i a t e d w i t h low r a t i n g s on m e a l s , t h e c a r e p r o v i d e d , and t h e f r e q u e n c y o f v i s i t s by t h e p h y s i c i a n . T he a u t h o r s c o n c l u d e d t h a t "how c h a r a c t e r i s t i c s o f t h e n u r s i n g home a r e p e r c e i v e d . . . a p p e a r s t o d e t e r m i n e c h a n g e and t h e d i r e c t i o n o f c h a n g e i n how n u r s i n g home p l a c e m e n t i s p e r c e i v e d " ( p . 371) . The s t u d y by B r a n d w e i n e t a l . ( 1 9 7 9 ) p r o v i d e d i n s i g h t s i n t o t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e b u t i t s f o c u s on r o l e s meant t h a t o t h e r a s p e c t s were n o t 13 e x p l o r e d . In a d d i t i o n , t h e r e p o r t d i d n o t c l e a r l y d i s t i n g u i s h b e t w e e n t h e a c t u a l f i n d i n g s o f t h e s t u d y and t h e a u t h o r s ' i n t e r p r e t a t i o n s o f t h o s e f i n d i n g s . T h u s , i t i s d i f f i c u l t t o know what was f a c t and what was i n f e r e n c e . W h i l e t h e s t u d y by L i n n and G u r e l i n d i c a t e d t h e i m p o r t a n c e o f t h e q u a l i t y o f c a r e , t h e r e s u l t s r e f l e c t e d a t t i t u d e s s h o r t l y a f t e r a d m i s s i o n . I t i s p o s s i b l e t h a t t h e f a c t o r s i n f l u e n c i n g a t t i t u d e s may c h a n g e a f t e r t h e i n i t i a l a d j u s t m e n t t o h a v i n g a s p o u s e i n an i n s t i t u t i o n . The f o l l o w i n g d i s c u s s i o n r e v i e w s l i t e r a t u r e t h a t i s a n e c d o t a l i n n a t u r e r a t h e r t h a n g r o u n d e d i n e m p i r i c a l r e s e a r c h . L o c k e r ( 1 9 8 1 ) saw t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e as a m a j o r l i f e c r i s i s , " t h e u l t i m a t e l o s s among t h e many l o s s e s e x p e r i e n c e d t h r o u g h t h e p r o c e s s o f a g i n g " ( p . 4 0 ) . From h e r o b s e r v a t i o n s a nd f r o m e x p e r i e n c e w i t h s u p p o r t g r o u p s f o r m e d f o r s p o u s e s o f t h e i n s t i t u t i o n a l i z e d e l d e r l y , she n o t e d t h a t t h e v i s i t i n g s p o u s e f a c e d " c r u c i a l c h a n g e s i n l i v i n g p a t t e r n , m a r i t a l r o l e , r e l a t i o n s h i p w i t h f a m i l y and f r i e n d s , and t h e d r a i n o f f i n a n c i a l r e s o u r c e s " ( p . 4 4 ) . V i s i t i n g s p o u s e s f e l t g u i l t y b e c a u s e o f t h e i r i n a b i l i t y t o c a r e f o r t h e i r d i s a b l e d s p o u s e s a t home and a n g r y b e c a u s e o f t h e b u r d e n t h e y had t o c a r r y . In a d d i t i o n , d e p r e s s i o n , l o n e l i n e s s , and a n x i e t y a b o u t t h e i r own h e a l t h were common. T h e y t e n d e d t o p r o j e c t t h e i r a n g e r o n t o t h e s t a f f , e s p e c i a l l y 14 i n t h e i r e x p e c t a t i o n s o f n u r s i n g c a r e . O t h e r c o p i n g b e h a v i o u r s were e v i d e n t among t h e f i v e c a s e i l l u s t r a t i o n s g i v e n i n t h e a r t i c l e . One man b l a m e d h i m s e l f f o r h i s w i f e ' s c o n d i t i o n and v i s i t e d e v e r y d a y . A n o t h e r w o r k e d as a v o l u n t e e r i n o r d e r t o t e m p o r a r i l y f o r g e t h i s p r o b l e m s . One woman was o v e r w h e l m e d by t h e s e p a r a t i o n f r o m h e r h u s b a n d and v i s i t i n g became v e r y i m p o r t a n t t o h e r . L o c k e r f e l t t h a t i n d i v i d u a l and g r o u p c o u n s e l l i n g h e l p e d v i s i t i n g s p o u s e s d e a l w i t h t h e e m o t i o n a l p r o b l e m s a s s o c i a t e d w i t h t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e . A d u l t c h i l d r e n were p o t e n t i a l s o u r c e s o f e m o t i o n a l s u p p o r t b u t some o f them were u n a b l e t o d e a l w i t h t h e i r own f e e l i n g s o f l o s s . L o c k e r q u o t e d one v i s i t i n g s p o u s e as s a y i n g t h a t "we a r e t h e widows o f t h e l i v i n g d e a d " ( p . 4 4 ) . H a l b f i n g e r ( 1 9 7 9 ) o b s e r v e d t h a t t h e v i s i t i n g s p o u s e " i s i n a k i n d o f l i m b o . H e / s h e i s n e i t h e r a p a r t n e r i n a m a r r i a g e n o r a b l e t o come t o t e r m s w i t h and a c c e p t d e a t h " ( p . 2 2 ) . L i k e L o c k e r , H a l b f i n g e r v i e w e d t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e as a l o s s f o r t h e v i s i t i n g s p o u s e b u t he f o c u s e d more on t h e i n t e r a c t i o n b e t w e e n t h e s t a f f and v i s i t i n g s p o u s e s . C o n f l i c t o f t e n a r o s e a f t e r t h e d i s a b l e d s p o u s e ' s a d m i s s i o n t o a n u r s i n g home. The v i s i t i n g s p o u s e " i s o f t e n v i e w e d as g u i 1 t - r i d d e n , o v e r p r o t e c t i v e and o v e r d e m a n d i n g . In r e t u r n , h e / s h e p e r c e i v e s t h e s t a f f as w a n t i n g t o t a k e o v e r c o m p l e t e l y , 15 w a n t i n g t o c o n t r o l e v e r y t h i n g and e x c l u d i n g them f r o m any s e m b l a n c e o f p a r t i c i p a t i n g i n t h e m a r i t a l r o l e " ( p . 2 2 ) . When i n s t i t u t i o n a l i z e d s p o u s e s a r e t r e a t e d as c h i l d r e n and v i s i t i n g s p o u s e s ' p a r t i c i p a t i o n n o t a l l o w e d , "we e n c o u r a g e t h e v i e w t h a t t h e l i f e now d i s c o n n e c t e d f r o m i t s p a s t h e l d l i t t l e m e a n i n g " ( p . 23) a n d , by i m p l i c a t i o n , t h a t t h e l i f e o f t h e v i s i t i n g s p o u s e has l i t t l e m e a n i n g . S t e u e r and C l a r k e ( 1 9 8 2 ) r e p o r t e d on t h r e e g r o u p s f o r m e d t o s u p p o r t t h e c a r e g i v e r s o f p a t i e n t s w i t h s e n i l e d e m e n t i a . In a g r o u p f o r s p o u s e s , t h e f o u r women w i t h i n s t i t u t i o n a l i z e d h u s b a n d s c a l l e d t h e m s e l v e s " w a l k i n g w i d o w s . " T h e s e s p o u s e s v i s i t e d f r e q u e n t l y and d i d n o t t a k e v a c a t i o n s f o r f e a r t h e y w o u l d t h e n n o t be a v a i l a b l e i n an e m e r g e n c y . In g r o u p d i s c u s s i o n , " t h e y r e c o g n i z e d t h i s as f u l f i l l i n g a m a g i c a l n e e d f o r m a i n t a i n i n g c o n t r o l " ( p . 9 1 ) . F e e l i n g s o f g u i l t , g r i e f , l o n e l i n e s s , a nd i s o l a t i o n were d e s c r i b e d by women a t t e n d i n g a g r o u p f o r w i v e s o f p a t i e n t s w i t h A l z h e i m e r ' s d i s e a s e ( L a V o r g n a , 1 9 7 9 ) . T h e y b e n e f i t t e d f r o m s h a r i n g t h e i r f e e l i n g s w i t h o t h e r s and f r o m t h e a c c e p t a n c e and c a m a r a d e r i e t h e g r o u p m e e t i n g s p r o v i d e d . As a r e s u l t o f t h e i r p a r t i c i p a t i o n , t h e a u t h o r c o n c l u d e d t h a t " t h e s e women a r e now a b l e t o f e e l s o r r y f o r t h e m s e l v e s as w e l l and t o t a k e p o s i t i v e a c t i o n t o w a r d f i n d i n g some p e r s o n a l h a p p i n e s s " ( p . 2 2 1 ) . 16 T h e s e p a p e r s i m p a r t v a l u a b l e i n f o r m a t i o n a b o u t v i s i t i n g s p o u s e s , t h e i r c o p i n g b e h a v i o u r s , and t h e v a r i o u s f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g c o p i n g b e h a v i o u r s . B u t much o f t h e c o n t e n t o f t h e s e r e p o r t s seems t o be t h e a u t h o r s ' i n t e r p r e t a t i o n s o f v i s i t i n g s p o u s e s ' b e h a v i o u r s . T h e r e f o r e , t h e g e n e r a l i z a b i 1 i t y o f t h e i r c o n c l u s i o n s i s d o u b t f u l . In a d d i t i o n , t h e s e a r e m a i n l y r e p o r t s o f g r o u p s f o r m e d b e c a u s e s o c i a l w o r k e r s f e l t t h a t v i s i t i n g s p o u s e s n e e d e d s u p p o r t . T h e s e g r o u p s were l i k e l y a t t e n d e d by v i s i t i n g s p o u s e s who were h a v i n g p r o b l e m s and n o t by t h o s e who saw no n e e d t o p a r t i c i p a t e o r who f e l t u n c o m f o r t a b l e t a l k i n g i n g r o u p s . T h e r e f o r e , t h e o b s e r v a t i o n s made i n t h e s e p a p e r s may a p p l y t o o n l y some v i s i t i n g s p o u s e s . I n t e r e s t i n g l y , none o f t h e s t u d i e s a n d p a p e r s l o c a t e d was w r i t t e n by a n u r s e . From t h e l i t e r a t u r e , one c o u l d s u r m i s e t h a t t h e p l i g h t o f v i s i t i n g s p o u s e s i s o f g r e a t e r c o n c e r n t o s o c i a l w o r k e r s t h a n t o n u r s e s . B u t i t i s n u r s e s who h a v e t h e m ost f r e q u e n t c o n t a c t w i t h v i s i t i n g s p o u s e s . T h i s l i t e r a t u r e p r o v i d e s g u i d a n c e f o r s o c i a l work p r a c t i c e and g r o u p work b u t l i t t l e d i r e c t i o n f o r n u r s e s i n t h e i r f r e q u e n t i n t e r a c t i o n s w i t h i n d i v i d u a l v i s i t i n g s p o u s e s . I m p a c t , C o p i n g B e h a v i o u r s , and I n f l u e n c i n g F a c t o r s The l i t e r a t u r e d e s c r i b e d a b o v e i s b r i e f l y s u m m a r i z e d i n t h i s d i s c u s s i o n and i s s u p p l e m e n t e d by l i t e r a t u r e on 17 t h e f a m i l y and t h e i n s t i t u t i o n a l i z e d e l d e r l y and on b e r e a v e m e n t and d i v o r c e . I m p a c t on t h e i r l i v e s . V i s i t i n g s p o u s e s were r e p o r t e d t o h a v e f e e l i n g s o f g u i l t , a n x i e t y , d e p r e s s i o n , a n g e r , h o p e l e s s n e s s , and h e l p l e s s n e s s ( B r a n d w e i n e t a l . , 1979; L o c k e r , 1 9 8 1 ) . L o n e l i n e s s , a s e n s e o f l o s s and g r i e f , as w e l l as an i n a b i l i t y t o p r o j e c t i n t o t h e f u t u r e were a l s o e x p e r i e n c e d ( B r a n d w e i n e t a l . , 1979; L a V o r g n a , 1979; L o c k e r , 1 9 8 1 ) . In a d d i t i o n , t h e r e l a t i o n s h i p s b e t w e e n v i s i t i n g s p o u s e s and s t a f f members were o f t e n c h a r a c t e r i z e d by c o n f l i c t and t h e r e l a t i o n s h i p s b e t w e e n v i s i t i n g s p o u s e s and f r i e n d s by d i s c o m f o r t ( B r a n d w e i n e t a l . , 1979 ) . The m a i n o b s e r v a t i o n i n t h e l i t e r a t u r e was t h a t v i s i t i n g s p o u s e s f e l t n e i t h e r m a r r i e d n o r w i d o w e d , u n a b l e t o e n j o y t h e b e n e f i t s o f m a r r i a g e and c o n v e r s e l y , u n a b l e t o p r o c e e d w i t h t h e i r l i v e s as u n m a r r i e d i n d i v i d u a l s ( B r a n d w e i n e t a l ., 1979; H a l b f i n g e r , 1979 ; L o c k e r , 1981; S t e u e r & C l a r k , 1 9 8 2 ) . O t h e r s t u d i e s , n o t s p e c i f i c t o v i s i t i n g s p o u s e s , a l s o r e p o r t e d g u i l t , a s e n s e o f l o s s and g r i e f , and h e l p l e s s n e s s as p r e v a l e n t among f a m i l y members o f t h e i n s t i t u t i o n a l i z e d e l d e r l y ( B e r e z i n , 1970; B r o d y , 1973; T o b i n & L i e b e r m a n , 1 9 7 6 ) . I n d e e d , s t a t e m e n t s r e g a r d i n g g u i l t were a l m o s t t r u i s m s i n t h e l i t e r a t u r e . B u t t h e r e s u l t s o f two s t u d i e s c h a l l e n g e t h e v a l i d i t y o f t h e s e s t a t e m e n t s . In a s t u d y o f 55 f a m i l y members, J o h n s o n and 18 W e r n e r ( 1 9 8 2 ) f o u n d t h a t g u i l t s c o r e s were l o w , b e l o w a n e u t r a l p o i n t . S m i t h and B e n g t s o n ( 1 9 7 9 ) , a f t e r a n a l y z i n g i n t e r v i e w s w i t h 100 a d u l t c h i l d r e n and t h e i r i n s t i t u t i o n a l i z e d p a r e n t s , r e p o r t e d t h a t o n l y 10% o f t h e a d u l t c h i l d r e n f e l t g u i l t y . T h u s , t h e a s s u m p t i o n t h a t a l l f a m i l y members f e e l g u i l t due t o t h e i n s t i t u t i o n a l i z a t i o n o f e l d e r l y r e l a t i v e s may be u n w a r r a n t e d . The e x i s t e n c e o f c o n f l i c t b e t w e e n s t a f f and f a m i l y members i s a n o t h e r f r e q u e n t o b s e r v a t i o n ( M i l l e r , 1969; S t r o w & M a c k r e t h , 1977) a n d , as i n B r a n d w e i n e t a l . ( 1 9 7 9 ) , i s u s u a l l y a t t r i b u t e d t o i n n e r c o n f l i c t s e x p e r i e n c e d by f a m i l y members. The n e e d t o f e e l n e e d e d was n o t c o n f i n e d t o v i s i t i n g s p o u s e s . S a f f o r d ( 1 9 8 0 ) r e p o r t e d t h a t f a m i l y members w a n t e d t o f i n d an a p p r o p r i a t e r o l e i n t h e i n s t i t u t i o n . B u t t h e y o f t e n e x p e r i e n c e d f r u s t r a t i o n and a n g e r "when c o n f r o n t e d by, and u n p r e p a r e d f o r t h e c o m p l e x i t i e s o f p r o v i d i n g t e n d e r l o v i n g c a r e w i t h i n t h e s t r u c t u r e o f a l a r g e o r g a n i z a t i o n " ( S a f f o r d , 1980, p. 6 5 9 ) . L o n e l i n e s s , s o c i a l d i f f i c u l t i e s , and i d e n t i t y p r o b l e m s were commented on o n l y i n t h e l i t e r a t u r e on v i s i t i n g s p o u s e s . I t i s i n t e r e s t i n g t o n o t e t h a t l o n e l i n e s s was t h e most common p r o b l e m f a c e d by women i n L o p a t a ' s l a r g e s t u d y o f widows ( 1 9 7 3 ) and i n a n o t h e r s t u d y o f t h e b e r e a v e d , t h e f e e l i n g o f l o n e l i n e s s 19 p e r s i s t e d f o r y e a r s a f t e r t h e d e a t h o f a s p o u s e ( G l i c k , W e i s s & P a r k e s , 1 9 7 4 ) . The l a c k o f p l a n n i n g f o r t h e f u t u r e was a l s o u n i q u e t o v i s i t i n g s p o u s e s . I n t e r e s t i n g l y , t h e f i n d i n g s o f C h i r i b o g a ( 1 9 8 2 a ) i n a s t u d y o f d i v o r c e d p e o p l e a r e s i m i l a r i n t h a t many o f t h o s e 50 y e a r s o f age and o v e r were u n a b l e t o p r o j e c t e v e n one y e a r i n t o t h e f u t u r e . He s u g g e s t e d t h a t t h i s r e f l e c t e d " n o t o n l y p r o b l e m s i n d e t a c h i n g f r o m t h e f o r m e r way o f l i f e , and n o t s i m p l y f e w e r o p t i o n s , b u t a l s o a g e n e r a l l y g r e a t e r u n c e r t a i n t y a b o u t w hat t o do n e x t " ( p . 1 1 3 ) . He a l s o n o t e d t h a t d i v o r c e d i n d i v i d u a l s were i n a " h e t w i x t and b e t w e e n " p o s i t i o n c h a r a c t e r i z e d by c o n f u s i o n and i n d e c i s i o n . C o p i n g b e h a v i o u r s . The l i t e r a t u r e i n d i c a t e s t h a t t h e c o p i n g b e h a v i o u r s u s e d by v i s i t i n g s p o u s e s i n c l u d e d v i s i t i n g f r e q u e n t l y ( B r a n d w e i n e t a l . , 1979) and p r o j e c t i n g t h e i r i n n e r c o n f l i c t s on t o t h e s t a f f o f t h e i n s t i t u t i o n ( L o c k e r , 1 9 8 1 ) . V i s i t i n g f r e q u e n t l y was v i e w e d as t h e means by w h i c h v i s i t i n g s p o u s e s m a i n t a i n e d t h e m a r i t a l b o n d , r e t a i n e d t h e i r s i g n i f i c a n c e i n t h e i r i n s t i t u t i o n a l i z e d s p o u s e s ' l i v e s ( H a l b f i n g e r , 1 9 7 9 ) , and e x p i a t e d t h e i r g u i l t ( B r a n d w e i n e t a l . , 1 9 7 9 ) . C o n f l i c t w i t h s t a f f members was n e a r l y a l w a y s v i e w e d as a p r o b l e m o f v i s i t i n g s p o u s e s . H a l b f i n g e r ( 1 9 7 9 ) i m p l i e d t h a t s p o u s e s and s t a f f members h a v e d i f f e r e n t p e r c e p t i o n s o f 20 t h e i r i n t e r a c t i o n s and i t i s t h e d i f f e r e n c e i n t h e s e p e r c e p t i o n s t h a t g i v e s r i s e t o c o n f l i c t . B e r e z i n ( 1 9 7 0 ) commented on t h e i m p o r t a n c e o f t h e c o n c e p t o f p a r t i a l g r i e f t o u n d e r s t a n d i n g t h e c o p i n g b e h a v i o u r s u s e d by t h e f a m i l y members o f t h e i n s t i t u t i o n a l i z e d e l d e r l y . G r i e f , t h e n o r m a l e m o t i o n a l and p s y c h o l o g i c a l r e a c t i o n t o l o s s , i s t h e " p r o c e s s o f r e a l i z a t i o n , o f m a k i n g r e a l i n s i d e t h e s e l f e v e n t s w h i c h h a v e a l r e a d y o c c u r r e d i n r e a l i t y o u t s i d e " ( P a r k e s , 1972b, p. 3 4 4 ) . B e r e z i n f e l t t h a t p a r t i a l g r i e f a r i s e s f r o m l o s s e s t h a t a r e i n c o m p l e t e o r o n g o i n g and i s g r i e f t h a t " c a n n o t be w o r k e d t h r o u g h , when i t c a n n o t be r e s o l v e d " ( p . 5 9 ) . He b e l i e v e d t h a t t h e e m o t i o n a l p r o b l e m s s e e n i n f a m i l y members r e s u l t f r o m t h e i n a b i l i t y t o work t h r o u g h t h e g r i e f p r o c e s s . F a m i l y members may s u b c o n s c i o u s l y w i s h t h e i r e l d e r l y r e l a t i v e s were d e a d b u t may d e a l w i t h t h i s w i s h t h r o u g h d e n i a l , o v e r p r o t e c t i v e n e s s , o r s e l f - s a c r i f i c i n g b e h a v i o u r . I n f l u e n c i n g o r d e t e r m i n i n g f a c t o r s . The l i t e r a t u r e i n d i c a t e d t h a t a number o f f a c t o r s i n f l u e n c e d o r d e t e r m i n e d t h e c o p i n g b e h a v i o u r s o f v i s i t i n g s p o u s e s . E m o t i o n a l s u p p o r t f r o m o t h e r s i n t h e same p r e d i c a m e n t and f r o m h e a l t h c a r e p r o f e s s i o n a l s t h r o u g h g r o u p work was s e e n as p a r t i c u l a r l y i n f l u e n t i a l ( B r a n d w e i n e t a l ., 1979 ; La V o r g n a , 1979; L o c k e r , 1981; S t e u e r & C l a r k , 1 9 8 2 ) . A d u l t c h i l d r e n may o r may n o t be h e l p f u l d e p e n d i n g on 21 t h e i r own e m o t i o n a l r e a c t i o n t o t h e i n s t i t u t i o n a l i z a t i o n o f an e l d e r l y p a r e n t ( L o c k e r , 1 9 8 1 ) . T he v i s i t i n g s p o u s e s ' p a s t c a r e g i v i n g a c t i v i t i e s a l s o seem t o i n f l u e n c e t h e i r c o p i n g b e h a v i o u r s ( B r a n d w e i n e t a l . , 1 9 7 9 ) ; and t h e i r p e r c e p t i o n s o f i n s t i t u t i o n a l c a r e and t h e s t a f f a f f e c t t h e i r a t t i t u d e t o and r e l a t i o n s h i p s w i t h s t a f f members ( H a l b f i n g e r , 1979; L i n n & G u r e l , 1 9 6 9 ) . The l i t e r a t u r e on f a m i l y members and t h e i n s t i t u t i o n a l i z e d e l d e r l y s u g g e s t s o t h e r f a c t o r s n o t m e n t i o n e d i n t h e l i t e r a t u r e s p e c i f i c t o v i s i t i n g s p o u s e s . W r i t e r s e m p h a s i z e d t h e i m p o r t a n c e o f t h e i n s t i t u t i o n ' s a t t i t u d e a n d a p p r o a c h t o f a m i l y members. Some s p o k e o f t h e i n s t i t u t i o n ' s s t a f f f o r m i n g a p a r t n e r s h i p w i t h f a m i l y members ( S t r o w & M a c k r e t h , 1 9 7 7 ) , s h a r i n g f u n c t i o n s ( D o b r o f & L i t w a k , 1 9 7 7 ) , o r v i e w i n g t h e f a m i l y r a t h e r t h a n i n d i v i d u a l r e s i d e n t s as t h e u n i t o f s e r v i c e ( S m i t h & B e n g t s o n , 1 9 7 9 ) . O t h e r f a c t o r s c e n t r e d on t h e s t a t e o f t h e i n s t i t u t i o n a l i z e d e l d e r l y r e l a t i v e s . In two s t u d i e s o f f a m i l y i n v o l v e m e n t , t h e e n j o y m e n t o f v i s i t i n g was a s s o c i a t e d w i t h t h e r e l a t i v e s ' m e n t a l s t a t u s and a b i l i t y t o c o m m u n i c a t e (Moss & K u r l a n d , 1979; Y o r k & C a l s y n , 1 9 7 7 ) . E n j o y m e n t was l e s s i f t h e r e l a t i v e s were d i s h e v e l e d o r c o n f u s e d ( Y o r k & C a l s y n , 1977) o r e x h i b i t e d mood d i s t u r b a n c e s (Moss & K u r l a n d , 1 9 7 9 ) . The p h y s i c a l and p a r t i c u l a r l y t h e m e n t a l d e t e r i o r a t i o n o f t h e e l d e r l y r e l a t i v e s d e t r a c t e d f r o m e n j o y m e n t o f v i s i t s ( Y o r k & 22 C a l s y n , 1 9 7 7 ) . F i n a l l y , t h e s t i g m a a t t a c h e d by s o c i e t y t o h a v i n g i n s t i t u t i o n a l i z e d an e l d e r l y r e l a t i v e a d d e d t o t h e e m o t i o n a l d i f f i c u l t i e s e x p e r i e n c e d by f a m i l y members ( S a f f o r d , 1 9 8 0 ) . A p p r o a c h e s t o U n d e r s t a n d i n g M a r i t a l D i s r u p t i o n s Much o f t h e l i t e r a t u r e on t h e f a m i l y members o f t h e i n s t i t u t i o n a l i z e d e l d e r l y u s e d c r i s i s t h e o r y e i t h e r i m p l i c i t l y o r e x p l i c i t l y t o e x p l a i n t h e i r r e a c t i o n s t o t h e i n s t i t u t i o n a l i z a t i o n o f e l d e r l y r e l a t i v e s . B u t t h e r a t i o n a l e f o r v i e w i n g i n s t i t u t i o n a l i z a t i o n as a c r i s i s f o r f a m i l y members d o e s n o t a p p e a r t o be b a s e d i n r e s e a r c h . I n d e e d , as t h e s t u d y by B r a n d w e i n e t a l . ( 1 9 7 9 ) i n d i c a t e d , v i s i t i n g s p o u s e s may ha v e l o n g s t a n d i n g p r o b l e m s i n m e e t i n g t h e i r own n e e d s a f t e r t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e . In t h e p r e s e n t s t u d y , h a v i n g a s p o u s e i n an i n s t i t u t i o n i s r e g a r d e d as a f o r m o f m a r i t a l d i s r u p t i o n and as a s o c i o c u l t u r a l f o r c e a c c o r d i n g t o t h e a s s u m p t i o n s o f t h e UBC Model ( 1 9 8 0 ) . T he p o s s i b l e c o n s e q u e n c e s o f m a r i t a l d i s r u p t i o n s a r e w e l 1 - d o c u m e n t e d i n t h e l i t e r a t u r e . B e r e a v e m e n t i s a s s o c i a t e d w i t h p o o r m e d i c a l a d j u s t m e n t ( G e r b e r , R u s a l e m , H a n n o n , B a t t i n , & A r k i n , 1975) and w i t h i n c r e a s e d m o r t a l i t y r a t e s ( P a r k e s , B e n j a m i n , & F i t z g e r a l d , 1 9 6 9 ) . M a r i t a l s e p a r a t i o n and d i v o r c e h a v e b e e n l i n k e d t o a w i d e r a n g e o f 23 p s y c h o p a t h o l o g y ( B l o o m , W h i t e , & A s h e r , 1 9 7 9 ) . A l t h o u g h L i n d e m a n n ( 1 9 4 4 / 1 9 6 5 ) a r g u e d t h a t a c u t e g r i e f l a s t s o n l y f o u r t o s i x w e e k s , more r e c e n t s t u d i e s h a v e d e t e r m i n e d t h a t g r i e v i n g and f e e l i n g s o f a t t a c h m e n t t o t h e d e c e a s e d may c o n t i n u e f o r y e a r s a f t e r b e r e a v e m e n t ( G l i c k e t a l . , 1974; L o p a t a , 1 9 7 3 ) . B u t why i s m a r i t a l d i s r u p t i o n so t r a u m a t i c ? In t h i s s e c t i o n two d i f f e r e n t a p p r o a c h e s t o a n s w e r i n g t h i s , q u e s t i o n a r e p r e s e n t e d . A l t h o u g h e a c h o f t h e s e a p p r o a c h e s i s drawn f r o m a l a r g e body o f l i t e r a t u r e , o n l y s e l e c t e d e l e m e n t s a r e d e s c r i b e d h e r e . The manner o f p r e s e n t a t i o n i s c o n g r u e n t w i t h t h e a s s u m p t i o n s o f t h e UBC Model ( 1 9 8 0 ) . M a r i t a l D i s r u p t i o n as a L o s s R e s e a r c h on l o s s and i t s r e l a t e d c o n c e p t , g r i e f , has c e n t r e d m a i n l y on t h e s t u d y o f b e r e a v e m e n t . A l t h o u g h t h e r e h a v e b e e n a t t e m p t s t o i n t e g r a t e e l e m e n t s o f l o s s t h e o r y w i t h s t r e s s r e s e a r c h ( P a r k e s , 1971; F a l e k & B r i t t o n , 1 9 7 4 ) , t h e p e r s p e c t i v e u s e d h e r e i s p s y c h o a n a l y t i c a l . L o s s i s d e f i n e d a s " b e i n g w i t h o u t t h a t w h i c h has o r c o u l d h a v e had m e a n i n g f o r t h e i n d i v i d u a l " (UBC M o d e l , 1980, p. 9 ) . The l o s t o b j e c t i s u s u a l l y a s i g n i f i c a n t p e r s o n , b u t i t c a n a l s o be a m a t e r i a l p o s s e s s i o n o r a s y m b o l i c v a l u e s u c h as o n e ' s r e p u t a t i o n ( A v e r i l l , 1 9 6 8 ) . 24 O b j e c t l o s s a l s o " e n t a i l s t h e d i s i n t e g r a t i o n o f s o c i a l r e l a t i o n s h i p s , w i t h a c o n s e q u e n t a l t e r a t i o n i n t h e l i v i n g p a t t e r n and s o c i a l c o n d i t i o n o f t h e b e r e a v e d " ( A v e r i l l , 1968, p. 7 2 4 ) . A v e r i l l ( 1 9 6 8 ) c a l l e d t h e d i s r u p t i o n o f t h e s e s o c i a l r e l a t i o n s h i p s r o l e l o s s . P a r k e s ( 1 9 7 1 ) and M a r r i s ( 1 9 7 5 ) v i e w e d t h e d i s r u p t i o n f o l l o w i n g a l o s s as r e f l e c t i n g t h e e x t e n t t o w h i c h t h e i n d i v i d u a l ' s s e n s e o f t h e c o n t i n u i t y o f l i f e had b e e n s h a k e n . I n d i v i d u a l s c o n s t r u c t t h e i r r e a l i t i e s on t h e b a s i s o f a s s u m p t i o n s t h a t t h e y h a v e a b o u t t h e m s e l v e s and a b o u t t h e i r w o r l d ( P a r k e s , 1 9 7 1 ) . T h e s e a s s u m p t i o n s o r what M a r r i s ( 1 9 7 5 ) c a l l e d t h e s t r u c t u r e s o f m e a n i n g , a r e c r e a t e d and t e s t e d t h r o u g h e x p e r i e n c e . T h e i r e f f e c t i v e n e s s r e s t s on t h e b e l i e f t h a t t h e r e i s c o n t i n u i t y i n l i f e . An a t t a c h m e n t r e l a t i o n s h i p i s a c r i t i c a l c o m p o n e n t o f t h e s e s t r u c t u r e s o f m e a n i n g . When t h e l o v e d p e r s o n i s l o s t , t h e i n d i v i d u a l ' s s e n s e o f c o n t i n u i t y i s s h a t t e r e d and h i s o r h e r a s s u m p t i o n s a r e no l o n g e r v a l i d . He o r she c a n no l o n g e r make s e n s e o f r e a l i t y a nd t h e p a s t , p r e s e n t , and f u t u r e h a v e no m e a n i n g . M a r r i s ( 1 9 7 5 ) c a l l e d t h i s s i t u a t i o n a c r i s i s o f d i s c o n t i n u i t y , w h i l e P a r k e s ( 1 9 7 1 ) c a l l e d i t a p s y c h o - s o c i a l t r a n s i t i o n . On a d e e p e r l e v e l , t h e i m p a c t o f a l o s s c a n a l s o be s e e n as r e f l e c t i n g t h e d i s r u p t i o n o f an a t t a c h m e n t b o n d . B o w l b y ( 1 9 6 1 ) b e l i e v e d t h a t a t t a c h m e n t r e l a t i o n s h i p s 25 a r i s e f r o m a s t r o n g , i n s t i n c t u a l d i s p o s i t i o n t o m a i n t a i n p r o x i m i t y t o a few o t h e r v a l u e d a n d / o r l o v e d i n d i v i d u a l s . As a c h i l d , one f o r m s an a t t a c h m e n t t o a m o t h e r - f i g u r e , a s o u r c e o f p r o t e c t i o n , w e l l - b e i n g , and s e c u r i t y . As an a d u l t , one f o r m s r e l a t i o n s h i p s b a s e d on t h e e a r l i e r e x p e r i e n c e o f a t t a c h m e n t . C h i l d r e n and a d u l t s p r o t e s t and f e a r t h e d i s r u p t i o n o f an a t t a c h m e n t b o n d , f o r i n i t s a b s e n c e t h e y a r e i s o l a t e d , w i t h o u t a s e n s e o f p l a c e . In t h e a b s e n c e o f an a t t a c h m e n t r e l a t i o n s h i p , i n d i v i d u a l s f e e l t h e l o n e l i n e s s o f e m o t i o n a l i s o l a t i o n ( W e i s s , 1 9 7 3 ) . A number o f w r i t e r s on g r i e f h a v e v i e w e d i t e s s e n t i a l l y as t h e s t r u g g l e b e t w e e n two c o n f l i c t i n g i m p u l s e s - - t o r e c o v e r t h e l o s s - o b j e c t o r t o r e c o g n i z e t h e l o s s and r e o r g a n i z e o n e ' s l i f e ( B o w l b y , 1961; F r e u d , 1 9 1 7 / 1 9 5 7 ; M a r r i s , 1975; P a r k e s , 1971; P e r e t z , 1 9 7 0 ) . G r i e f i s commonly v i e w e d as a p r o c e s s c o n s i s t i n g o f t h r e e p h a s e s - - s h o c k , d e s p a i r , and r e c o v e r y ( A v e r i l l , 1 9 6 8 ) . In n o r m a l g r i e f , t h e n e c e s s i t y t o f a c e r e a l i t y c o n q u e r s t h e s e d u c t i v e b u t , u l t i m a t e l y , s e l f - d e s t r u c t i v e u r g e t o m a i n t a i n t h e p a s t . F a i l u r e t o work t h r o u g h g r i e f h a s n e g a t i v e i m p l i c a t i o n s f o r t h e i n d i v i d u a l ' s f u t u r e m e n t a l h e a l t h ( L i n d e m a n n , 1 9 4 4 / 1 9 6 5 ) . M a r r i s ( 1 9 7 5 ) s u m m a r i z e d t h e t y p i c a l s i g n s o f g r i e f as p h y s i c a l d i s t r e s s and w o r s e h e a l t h ; an i n a b i l i t y t o s u r r e n d e r t h e p a s t — e x p r e s s e d , f o r i n s t a n c e , by b r o o d i n g o v e r m e m o r i e s , s e n s i n g t h e p r e s e n c e o f t h e d e a d , c l i n g i n g t o p o s s e s s i o n s , b e i n g u n a b l e t o c o m p r e h e n d t h e l o s s , f e e l i n g s o f u n r e a l i t y ; w i t h d r a w a l i n t o a p a t h y ; and h o s t i l i t y a g a i n s t 26 o t h e r s , a g a i n s t f a t e , o r t u r n e d i n upon o n e s e l f ( p . 29) . M a r i t a l D i s r u p t i o n as a M a j o r L i f e C h a n g e R e s e a r c h on m a j o r l i f e c h a n g e s has b e e n p r i m a r i l y c o n c e r n e d w i t h e s t a b l i s h i n g a r e l a t i o n s h i p b e t w e e n c e r t a i n e v e n t s and s u b s e q u e n t m e n t a l and p h y s i c a l d i s o r d e r s ( D o h r e n w e n d & D o h r e n w e n d , 1 9 7 4 ) . More r e c e n t l y , i n v e s t i g a t o r s h a v e t r i e d t o c l a r i f y t h e n a t u r e and s t r e n g t h o f t h a t r e l a t i o n s h i p ( D o h r e n w e n d & D o h r e n w e n d , 1978) and t o i d e n t i f y t h e v a r i a b l e s a f f e c t i n g t h a t r e l a t i o n s h i p (Hyman & Woog, 1 9 8 2 ) . The f o l l o w i n g d i s c u s s i o n f o c u s e s on t h e b a s i c i s s u e o f what a s p e c t s o f m a j o r l i f e c h a n g e s e x p l a i n t h e i r i m p a c t on i n d i v i d u a l s ' l i v e s . One g r o u p o f r e s e a r c h e r s e m p h a s i z e t h e i m p o r t a n c e o f t h e m a g n i t u d e o r t h e q u a n t i t a t i v e a s p e c t s o f t h e c h a n g e ( H o l m e s & M a s u d a , 1974; Holmes & Rahe, 1967; R u c h , 1 9 7 7 ) . Holmes and Rahe ( 1 9 6 7 ) d e v i s e d a s o c i a l r e a d j u s t m e n t s c a l e w h i c h r a t e s v a r i o u s l i f e e v e n t s a c c o r d i n g t o t h e amount o f c h a n g e o r a d j u s t m e n t t h e y e n t a i l . The s c a l e c o n t a i n s s o c i a l l y d e s i r a b l e and u n d e s i r a b l e e v e n t s . The d e a t h o f a s p o u s e , d i v o r c e and m a r i t a l s e p a r a t i o n s a r e a s s i g n e d t h e g r e a t e s t number o f l i f e c h a n g e u n i t s b e c a u s e t h e y r e q u i r e t h e g r e a t e s t amount o f a d j u s t m e n t . A n o t h e r a s p e c t o f t h i s a p p r o a c h i s t h a t l i f e c h a n g e u n i t s a r e a d d i t i v e . T h a t i s , t h e g r e a t e r t h e number o f l i f e c h a n g e 27 u n i t s and t h e l a r g e r t h e l i f e c h a n g e s c o r e , t h e g r e a t e r t h e i n d i v i d u a l ' s s u s c e p t i b i l i t y t o d i s o r d e r s ( H o l m e s & M a s u d a , 1 9 7 4 ) . The s o c i a l r e a d j u s t m e n t r a t i n g s c a l e has b e e n c r i t i c i z e d on m e t h o d o l o g i c a l and c o n c e p t u a l g r o u n d s ( B r o w n , 1974; D o h r e n w e n d & D o h r e n w e n d , 1 9 7 8 ) . O t h e r r e s e a r c h e r s f e e l t h a t t h e i n d i v i d u a l ' s p e r c e p t i o n s o r t h e q u a l i t a t i v e a s p e c t s o f t h e c h a n g e s h o u l d t a k e p r e c e d e n c e i n e x p l a i n i n g t h e i m p a c t . I t has b e e n p r o p o s e d t h a t s i t u a t i o n s p e r c e i v e d as e n t a i l i n g l o s s a r e more a s s o c i a t e d w i t h p r o b l e m s t h a n a r e s i t u a t i o n s o f g a i n ( M e c h a n i c , 1974; P a y k e l , 1 9 7 4 ) . The u n d e s i r a b i 1 i t y and t h e l o n g t e r m t h r e a t o f t h e c h a n g e a l s o n e g a t i v e l y a f f e c t a d j u s t m e n t ( F e n w i c k & B a r r e s i , 1981; Brown, 1 9 7 4 ) . C h a n g e s w i t h a m b i g u o u s m e a n i n g s and u n c e r t a i n c o n s e q u e n c e s f o r t h e i n d i v i d u a l may be p a r t i c u l a r l y u n s e t t l i n g ( C h i r i b o g a , 1 9 8 2 a ) . As M c C a l l and Simmons ( 1 9 6 6 ) o b s e r v e d , man i s a p l a n n i n g a n i m a l b u t " u n t i l we h a v e made o u t t h e i d e n t i t y and m e a n i n g o f a t h i n g v i s - a - v i s o u r p l a n s , we h a v e no b e a r i n g s ; we c a n n o t p r o c e e d " ( p . 6 1 ) . A n o t h e r f a c t o r s u g g e s t e d by D o h r e n w e n d and D o h r e n w e n d ( 1 9 7 8 ) i s t h e d e g r e e t o w h i c h t h e i n d i v i d u a l p e r c e i v e s t h a t he o r she c a n c o n t r o l t h e c o u r s e and t h e o u t c o m e o f t h e c h a n g e . P e r c e i v e d l a c k o f c o n t r o l r e f l e c t s n e g a t i v e l y on o n e ' s s e n s e o f e f f i c a c y o r 28 c o m p e t e n c y a n d , u l t i m a t e l y , on o n e ' s s e n s e o f s e l f - e s t e e m and i d e n t i t y ( K u y p e r s & B e n g t s o n , 1 9 7 3 ) . Some w r i t e r s b e l i e v e t h a t an i n d i v i d u a l ' s a d j u s t m e n t t o d i s r u p t i v e l i f e c h a n g e i s d e t e r m i n e d by t h e s o c i e t y i n w h i c h h e / s h e l i v e s ( P e a r l i n , 1 9 8 0 ) . In L o p a t a ' s ( 1973 ) s t u d y o f w i d o w s , h i g h e r l e v e l s o f e d u c a t i o n and s o c i a l s t a t u s c h a r a c t e r i z e d s u b j e c t s who l i v e d i n b e t t e r c i r c u m s t a n c e s and were more s o c i a l l y e n g a g e d . B u t , w h e t h e r a c h a n g e i s s e e n as d e s i r a b l e o r u n d e s i r a b l e may d e p e n d on i t s c o n s e q u e n c e s , t h e e n d u r i n g s o c i a l c o n d i t i o n s w i t h w h i c h i n d i v i d u a l s h a v e t o l i v e as a r e s u l t o f t h e c h a n g e ( P e a r l i n , 1 9 8 0 ) . The d i s c u s s i o n t o t h i s p o i n t has v i e w e d m a j o r l i f e c h a n g e s as d i s c r e t e e v e n t s d i s c o n n e c t e d f r o m t h e i n d i v i d u a l ' s l i f e c o u r s e . T h e o r i e s s u c h as E r i k s o n ' s e i g h t s t a g e s o f p e r s o n a l i t y d e v e l o p m e n t ( 1 9 5 9 ) " s e e k t o e x p l a i n t h e n a t u r e o f g r o w t h and t h e p a t t e r n s o f c h a n g e i n i n d i v i d u a l s f r o m b i r t h t o d e a t h " ( K i m m e l , 1980, p. 7 ) . L o s s e s , l i f e c h a n g e s , and o t h e r e v e n t s a r e a l l v i e w e d as p a r t o f t h e s e q u e n c e o f g r o w t h and c h a n g e . N e u g a r t e n ( 1 9 7 0 ) b e l i e v e s t h a t an i n d i v i d u a l " p a s s e s t h r o u g h a s o c i a l l y r e g u l a t e d c y c l e f r o m b i r t h t o d e a t h as i n e x o r a b l y as he p a s s e s t h r o u g h t h e b i o l o g i c a l c y c l e : a s u c c e s s i o n o f s o c i a l l y d e l i n e a t e d a g e - s t a t u s e s , e a c h w i t h i t s r e c o g n i z e d r i g h t s , d u t i e s and o b l i g a t i o n s " ( p . 7 1 ) . A n o r m a t i v e p a t t e r n e x i s t s , a " s o c i a l l y p r e s c r i b e d 29 t i m e t a b l e " o f w h i c h i n d i v i d u a l s a r e w e l l aware and w h i c h a l l o w s them t o a n t i c i p a t e and p r e p a r e f o r t h e n o r m a l t u r n i n g p o i n t s i n t h e i r l i v e s . N e u g a r t e n f e e l s t h a t t h e s e t u r n i n g p o i n t s o r m a r k e r s s u c h as m a r r i a g e o r r e t i r e m e n t " a r e n o t , f o r t h e v a s t g r o u p o f n o r m a l p e r s o n s , t r a u m a t i c e v e n t s o r c r i s e s t h a t t r i g g e r m e n t a l i l l n e s s o r d e s t r o y t h e c o n t i n u i t y o f t h e s e l f " ( p . 7 9 ) . R a t h e r , i t i s t h e o f f - t i m e , u n p r e d i c t a b l e e v e n t s w h i c h a r e l i k e l y t o be t r a u m a t i c b e c a u s e t h e y " u p s e t t h e s e q u e n c e a n d r h y t h m o f t h e l i f e c y c l e " ( p . 8 6 ) . O t h e r w r i t e r s s h a r e N e u g a r t e n ' s c o n c e r n w i t h o f f - t i m e o r u n p r e d i c t a b l e e v e n t s and t h e i r e f f e c t s ( G e o r g e , 1984b; P e a r l i n , 1 9 8 0 ) . R e c e n t l y , r e s e a r c h e r s have q u e s t i o n e d t h e v a l u e o f a s s u m i n g a c l e a r - c u t r e l a t i o n s h i p b e t w e e n e v e n t s and s u b s e q u e n t p r o b l e m s ( C h i r i b o g a , 1982b; L e v i n s o n , 1 9 8 0 ) . U s i n g N e u g ? r t e n ' s t e r m i n o l o g y , L e v i n s o n ( 1 9 8 0 ) p r o p o s e d t h a t t h e s e e v e n t s be r e g a r d e d as " m a r k e r e v e n t s " t h a t s e r v e t o p u n c t u a t e and d r a m a t i z e a r e l a t i v e l y e x t e n d e d , c o m p l e x s e q u e n c e o f c h a n g e . I f we f o c u s t o o n a r r o w l y on t h e e v e n t i t s e l f , we l o s e s i g h t o f t h e d e e p e r p r o c e s s . O t h e r a s p e c t s o f t h i s s e q u e n c e , t h o u g h l e s s d r a m a t i c o r l e s s a c c e s s i b l e t o i n v e s t i g a t i o n t h a n t h e m a r k e r e v e n t , may y e t be o f f a t e f u l i m p o r t a n c e i n t h e l i f e c o u r s e ( p . 2 7 5 ) . Summary From t h e r e v i e w o f t h e l i t e r a t u r e , i t i s e v i d e n t t h a t h a v i n g a s p o u s e i n an i n s t i t u t i o n d o e s s i g n i f i c a n t l y 30 a f f e c t t h e l i v e s o f v i s i t i n g s p o u s e s . Some e l e m e n t s o f t h e i r s i t u a t i o n a r e e x p e r i e n c e d by f a m i l y members i n g e n e r a l , b u t o t h e r e l e m e n t s , s u c h as l o n e l i n e s s and i d e n t i t y p r o b l e m s , a r e u n i q u e t o v i s i t i n g s p o u s e s . A l t h o u g h t h e l i t e r a t u r e e x h o r t s h e a l t h c a r e p r o f e s s i o n a l s t o f o r m a p a r t n e r s h i p w i t h f a m i l y members, t h e r e i s a d e a r t h o f i n f o r m a t i o n t o g u i d e n u r s e s i n t h e i r i n t e r a c t i o n s w i t h f a m i l y members a n d , s p e c i f i c a l l y , w i t h v i s i t i n g s p o u s e s . The l i t e r a t u r e t h a t d o e s e x i s t i s b a s e d p r i m a r i l y on i n t e r p r e t a t i o n s and o p i n i o n s r a t h e r t h a n b e i n g g r o u n d e d i n r e s e a r c h . B e c a u s e o f t h e p a u c i t y o f r e s e a r c h s t u d i e s , t h e n a t u r e o f t h e i r e x p e r i e n c e c a n o n l y be s p e c u l a t e d u p o n . I t i s e v i d e n t t h a t t h e r e i s a ne e d f o r t h e p r e s e n t s t u d y . The l i t e r a t u r e on l o s s and m a j o r l i f e c h a n g e s s u g g e s t s ways o f u n d e r s t a n d i n g t h e n a t u r e o f t h e f o r c e s i n f l u e n c i n g a v i s i t i n g s p o u s e ' s l i f e . L o s s t h e o r y d i r e c t s a t t e n t i o n t o a t t a c h m e n t b o n d s and t h e i r i m p o r t a n c e t o how i n d i v i d u a l s v i e w t h e w o r l d a n d t o t h e i r w e l l - b e i n g . The i n s t i t u t i o n a l i z a t i o n o f a s p o u s e may be e x p e c t e d t o i n t e r r u p t t h e v i s i t i n g s p o u s e ' s s e n s e o f t h e c o n t i n u i t y o f l i f e a nd t o be a s s o c i a t e d w i t h g r i e f r e a c t i o n s and l o n e l i n e s s . 3 1 The i n s t i t u t i o n a l i z a t i o n o f a s p o u s e as a m a j o r l i f e c h a n g e i s c o m p a r a b l e t o o t h e r c h a n g e s i n v o l v i n g t h e m a r i t a l r e l a t i o n s h i p . I t s i m p a c t may be e x p l a i n e d b y : t h e amount o f c h a n g e i t s e t s i n m o t i o n and t h e p r e s e n c e o r a b s e n c e o f o t h e r l i f e c h a n g e s o c c u r r i n g a r o u n d t h e same t i m e ; w h e t h e r i t i s s e e n as a l o s s o r a g a i n ; i t s d e s i r a b i l i t y , a m b i g u i t y , and u n c e r t a i n t y ; a n d , i t s p o t e n t i a l t o be c o n t r o l l e d . S o c i e t y and t h e c o n d i t i o n s w i t h w h i c h a v i s i t i n g s p o u s e has t o l i v e as a r e s u l t o f t h e c h a n g e may a l s o be i m p o r t a n t t o h i s o r h e r a d j u s t m e n t . F i n a l l y , t h e s i g n i f i c a n c e o f t h e c h a n g e t o t h e v i s i t i n g s p o u s e ' s m e n t a l t i m e t a b l e i ; a v i t a l c o n s i d e r a t i o n i n a s s e s s i n g t h e i m p a c t . 32 CHAPTER THREE M e t h o d o l o g y The p u r p o s e o f t h i s s t u d y was t o e x p l o r e a n d d e s c r i b e t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e . B e c a u s e l i t t l e i s known a b o u t h a v i n g an e l d e r l y s p o u s e i n a l o n g - t e r m c a r e i n s t i t u t i o n an e x p l o r a t o r y d e s c r i p t i v e r e s e a r c h d e s i g n was a p p r o p r i a t e . S u c h a d e s i g n a l l o w s t h e r e s e a r c h e r t h e f l e x i b i l i t y and i n t e n s i t y o f s t u d y r e q u i r e d t o c h a r a c t e r i z e a r e l a t i v e l y u n r e s e a r c h e d phenomenon ( S e l l t i z , W r i g h t s m a n , & Cook, 1 9 7 6 ) . T h i s c h a p t e r d e s c r i b e s t h e c o n g r u e n c e o f t h i s r e s e a r c h d e s i g n w i t h t h e UBC Model ( 1 9 8 0 ) , t h e s e t t i n g , t h e s e l e c t i o n o f t h e s a m p l e , t h e d a t a c o l l e c t i o n , t h e d a t a a n a l y s i s , and e t h i c a l c o n s i d e r a t i o n s . The R e s e a r c h D e s i g n and t h e UBC Model f o r N u r s i n g ( 1 9 8 0 ) A c o n c e p t u a l model p r o v i d e s a r e s e a r c h e r w i t h a s i m p l i f i e d r e p r e s e n t a t i o n o f t h e f o c u s o f i n q u i r y . A model i n d i c a t e s t h e k e y e l e m e n t s o f t h e phenomenon u n d e r s t u d y and t h e r e l a t i o n s h i p s b e t w e e n t h e s e e l e m e n t s ( H a r d y , 1 9 7 4 ) . I t d o e s n o t , h o w e v e r , c o n s t i t u t e r e a l i t y and c a n o n l y " g i v e us a s e n s e o f what i s g o i n g on and why" ( H a r d y , 1974, p. 1 0 4 ) . In t h i s s t u d y t h e UBC Model ( 1 9 8 0 ) p r o v i d e d t h e p e r s p e c t i v e on t h e f o c u s o f 33 i n q u i r y — t h e v i s i t i n g s p o u s e . The Model was a p p r o p r i a t e b e c a u s e i t a l l o w e d f o r a b r o a d a s s e s s m e n t o f t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e , an a s s e s s m e n t w h i c h c a n t h e n be u s e d i n n u r s i n g p r a c t i c e . Q u a l i t a t i v e r e s e a r c h m e t h o d s a r e u n i q u e l y s u i t e d t o o b t a i n i n g t h e k i n d o f i n d e p t h k n o w l e d g e o f human b e h a v i o u r s t h a t c a n e n r i c h and g u i d e n u r s i n g p r a c t i c e ( S w a n s o n & C h e n i t z , 1 9 8 2 ) . T h e y a l l o w t h e r e s e a r c h e r t o " g e t c l o s e t o t h e d a t a " r a t h e r t h a n b e i n g c o n s t r a i n e d by " p r e c o n c e i v e d , r i g i d l y s t r u c t u r e d , and h i g h l y q u a n t i f i e d t e c h n i q u e s " ( F i l s t e a d , 1970, p. 7 ) . T h e y a l s o a l l o w t h e r e s e a r c h e r t o g a i n an u n d e r s t a n d i n g o f i n d i v i d u a l s ' p e r c e p t i o n s o f t h e i r e x p e r i e n c e and t o i n d u c t i v e l y d e v e l o p an i n t e r p r e t a t i o n t h a t i s t r u e t o t h e i r e x p e r i e n c e ( R i s t , 1 9 7 9 ) . The UBC M o d e l ( 1 9 8 0 ) s i m p l i f i e d and s y s t e m a t i z e d t h e r e s e a r c h e r ' s e x p l o r a t i o n o f t h e c o m p l e x i t i e s o f t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e and d i r e c t e d t h e r e s e a r c h e r t o e l i c i t t h e i n d i v i d u a l ' s p e r c e p t i o n s and t o v a l i d a t e t h e r e s e a r c h e r ' s i n t e r p r e t a t i o n s w i t h t h e i n d i v i d u a l . S e t t i ng The s e t t i n g was a 3 0 0 - b e d e x t e n d e d c a r e u n i t (ECU) a s s o c i a t e d w i t h a u n i v e r s i t y and l o c a t e d on t h e p e r i p h e r y o f a m e t r o p o l i t a n a r e a . P a r k i n g i s a v a i l a b l e and t h e ECU i s a c c e s s i b l e by b u s . V i s i t i n g i s u n r e s t r i c t e d f r o m 34 8 a.m. t o 8 p.m. The ECU has f o u r f l o o r s , e a c h o f w h i c h i s home t o 75 r e s i d e n t s . In a d d i t i o n t o f o u r - and f i v e - b e d r o o m s , e v e r y f l o o r has t h r e e p r i v a t e and t h r e e s e m i - p r i v a t e r o o m s . A t t h e t i m e o f t h i s s t u d y , t h e r e were no p r i v a t e v i s i t i n g a r e a s f o r r e s i d e n t s and t h e i r f a m i l i e s . E a c h o f t h e f o u r f l o o r s i s s i m i l a r i n t e r m s o f t h e r e s i d e n t s ' c h a r a c t e r i s t i c s and t h e i r r e q u i r e d l e v e l o f c a r e a n d o f t h e mix o f p h y s i c a l l y and c o g n i t i v e l y i m p a i r e d r e s i d e n t s . A t t h e t i m e o f t h i s s t u d y , t h e r e w e r e a b o u t 40 m a r r i e d r e s i d e n t s . The r a t i o o f p r o f e s s i o n a l ( r e g i s t e r e d n u r s e s ) t o n o n - p r o f e s s i o n a l ( p a t i e n t c a r e a i d e s and u n i t c l e r k s ) n u r s i n g s t a f f was 2 0 : 8 0 . The r e s e a r c h e r had w o r k e d i n t h e ECU and t h u s was f a m i l i a r w i t h t h e s e t t i n g and w i t h t h e r e s i d e n t s . S e l e c t i o n o f t h e S a m p l e S a m p l i n g C r i t e r i a The s a m p l i n g c r i t e r i a i n t h i s s t u d y r e q u i r e d t h a t p a r t i c i p a n t s : 1. were t h e s p o u s e s o f t h o s e r e s i d e n t s who h a d l i v e d i n t h e ECU f o r a t l e a s t s i x m o n t h s . 2. v i s i t e d t h e i r d i s a b l e d s p o u s e s a t l e a s t o n c e e v e r y two w e e k s . 3. l i v e d i n p r i v a t e d w e l l i n g s . 35 4. s p o k e E n g l i s h . 5. l i v e d i n t h e m e t r o p o l i t a n a r e a . The f i r s t two c r i t e r i a e s t a b l i s h e d t h a t t h e s a m p l e c o u l d p r o v i d e t h e r i c h n e s s o f d a t a r e q u i r e d i n an e x p l o r a t o r y s t u d y - - s p o u s e s who were f r e q u e n t v i s i t o r s t o t h e ECU and who, i t was a s s u m e d , h a d grown a c c u s t o m e d t o h a v i n g t h e i r h u s b a n d s o r w i v e s i n t h e ECU. The t h i r d c r i t e r i o n was b a s e d on t h e a s s u m p t i o n t h a t t h e e x p e r i e n c e s o f s p o u s e s l i v i n g i n n o n - p r i v a t e o r c o l l e c t i v e d w e l l i n g s may be s i g n i f i c a n t l y d i f f e r e n t f r o m t h e e x p e r i e n c e s o f t h o s e l i v i n g i n p r i v a t e d w e l l i n g s . The l a s t two c r i t e r i a made i n t e r v i e w i n g p o s s i b l e and f e a s i b l e f o r t h e r e s e a r c h e r . S a mple S i z e I d e a l l y , s a m p l i n g i n an e x p l o r a t o r y s t u d y c o n t i n u e s u n t i l no a d d i t i o n a l s i g n i f i c a n t d a t a c a n be f o u n d ( D i e r s , 1 9 7 9 ) . In t h i s s t u d y , t h e o r e t i c a l s a m p l i n g , as i t was c a l l e d by G l a s e r and S t r a u s s ( 1 9 6 7 ) , was n o t p o s s i b l e b e c a u s e o f t i m e c o n s t r a i n t s on t h e r e s e a r c h e r . A d e c i s i o n was made t o s e e k a s a m p l e o f e i g h t t o t w e l v e v i s i t i n g s p o u s e s t o o b t a i n t h e n e c e s s a r y r i c h n e s s o f d a t a and t o meet t h e p u r p o s e o f t h e s t u d y . 36 S e l e c t i o n P r o c e d u r e Two m e t h o d s were u s e d t o i n t r o d u c e p o t e n t i a l p a r t i c i p a n t s t o t h e s t u d y . F i r s t , t h e r e s e a r c h e r g a v e t h e u n i t c l e r k on e a c h f l o o r i n f o r m a t i o n l e t t e r s d e s c r i b i n g t h e s t u d y ( s e e A p p e n d i x B) and a s k e d t h a t t h e y be g i v e n t o v i s i t i n g s p o u s e s . S e c o n d , i n f o r m a t i o n l e t t e r s w e re made p u b l i c l y a v a i l a b l e on t h e b u l l e t i n b o a r d on e a c h f l o o r . In r e a l i t y , a l l t h e p a r t i c i p a n t s were o b t a i n e d by t h e f i r s t m e t h o d . I n t e r e s t e d v i s i t i n g s p o u s e s were d i r e c t e d t o f i l l i n t h e r e p l y s e c t i o n on t h e l e t t e r s i f t h e y w i s h e d t o p a r t i c i p a t e and t h e n t o p l a c e t h e l e t t e r s i n b o x e s a t t a c h e d t o t h e b u l l e t i n b o a r d s on e a c h f l o o r . The r e s e a r c h e r c o n t a c t e d i n t e r e s t e d v i s i t i n g s p o u s e s by t e l e p h o n e , e x p l a i n e d t h e s t u d y a g a i n , and a r r a n g e d f o r a f i r s t i n t e r v i e w t i m e . Ten p o t e n t i a l p a r t i c i p a n t s i n d i c a t e d t h e i r i n t e r e s t ; n i n e a g r e e d t o p a r t i c i p a t e . B e f o r e e a c h i n t e r v i e w b e g a n , t h e r e s e a r c h e r e x p l a i n e d t h e s t u d y o n c e more and o b t a i n e d t h e p a r t i c i p a n t ' s w r i t t e n c o n s e n t ( s e e A p p e n d i x C ) . D a t a C o l l e c t i o n The r e s e a r c h e r u s e d f o c u s e d i n t e r v i e w s t o c o l l e c t t h e d a t a . T h i s r e l a t i v e l y u n s t r u c t u r e d i n t e r v i e w a p p r o a c h i s a p p r o p r i a t e when l i t t l e i s known a b o u t a 37 r e s e a r c h a r e a ( S e l l t i z e t a l . , 1 9 7 6 ) . The f u n c t i o n o f t h e i n t e r v i e w e r " i s t o f o c u s a t t e n t i o n upon a g i v e n e x p e r i e n c e and i t s e f f e c t s " ( S e l l t i z e t a l . , 1976, p. 1 8 8 ) . The d a t a c o l l e c t i o n g u i d e u s e d t o e x p l o r e t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e l i s t e d t h e n i n e b a s i c human n e e d s and i n d i c a t e d s p e c i f i c a r e a s o f i n q u i r y a s s o c i a t e d w i t h e a c h n e e d ( s e e A p p e n d i x D ) . T h r e e b a s i c q u e s t i o n s c o r r e s p o n d i n g t o t h e t h r e e a s p e c t s o f t h e p u r p o s e o f t h e s t u d y were a s k e d i n e a c h n e e d a r e a . F o r e x a m p l e , p a r t i c i p a n t s were a s k e d , "Has h a v i n g y o u r s p o u s e i n t h e ECU a f f e c t e d t h e way y o u f e e l a b o u t y o u r s e l f ? " , "What do y o u do t o f e e l g o o d a b o u t y o u r s e l f ? " , a n d , "What h e l p s y o u f e e l g o o d a b o u t y o u r s e l f ? " . D e m o g r a p h i c d a t a and b a c k g o u n d i n f o r m a t i o n a d d e d t o t h e d e p i c t i o n o f p a r t i c i p a n t s and t h e i r s p o u s e s . T h u s , t h e p a r t i c i p a n t ' s a g e , p e r c e i v e d h e a l t h s t a t u s , a n d l e n g t h o f t i m e m a r r i e d ; and t h e d i s a b l e d s p o u s e ' s age and d u r a t i o n o f r e s i d e n c e i n t h e ECU were i n c l u d e d as a r e a s c o v e r e d by t h e g u i d e . A l t h o u g h t h e d a t a c o l l e c t i o n g u i d e p r o v i d e d some s t r u c t u r e t o i n t e r v i e w i n g , t h e w o r d i n g and s e q u e n c e o f q u e s t i o n s was n o t p r e d e t e r m i n e d . In k e e p i n g w i t h t h e s t u d y ' s a p p r o a c h , p a r t i c i p a n t s were f r e e t o r e c o u n t t h e i r e x p e r i e n c e s i n as much d e t a i l as t h e y w i s h e d . In a d d i t i o n t o t h e t h r e e b a s i c q u e s t i o n s a s s o c i a t e d w i t h 38 e a c h n e e d a r e a , o t h e r q u e s t i o n s w ere a s k e d i n o r d e r t o e x p l o r e t h e p a r t i c i p a n t s ' r e s p o n s e s f u l l y and t o d e v e l o p t h e r e c u r r i n g t h e m e s . D a t a C o l l e c t i o n P r o c e d u r e D i f f e r e n t " s l i c e s o f d a t a " ( G l a s e r & S t r a u s s , 1967, p. 65) e n r i c h a r e s e a r c h e r ' s u n d e r s t a n d i n g o f t h e phenomenon u n d e r s t u d y . In t h i s s t u d y , a u d i o - t a p e r e c o r d e d i n t e r v i e w s a n d w r i t t e n i m p r e s s i o n s o f t h e p a r t i c i p a n t s and t h e i r l i v i n g s i t u a t i o n s were t h e s l i c e s o f d a t a . When p a r t i c i p a n t s c o n t i n u e d t a l k i n g a f t e r c l o s u r e o f t h e i n t e r v i e w , t h e r e s e a r c h e r / i n t e r v i e w e r r e c o r d e d t h e i r r e m a r k s f r o m memory as s o o n as p o s s i b l e . W r i t t e n i m p r e s s i o n s , as D i e r s ( 1 9 7 9 ) c a u t i o n e d , were o n l y u s e d as d a t a and n o t as t h e r e s e a r c h e r ' s d e f i n i t i v e i n t e r p r e t a t i o n s o f t h e s i t u a t i o n . The p r o c e s s o f i n t e r v i e w i n g was s i m i l a r f o r a l l p a r t i c i p a n t s . P a r t i c i p a n t s had a c h o i c e o f w h e r e t h e y w a n t e d t o be i n t e r v i e w e d ; a l l c h o s e t o be i n t e r v i e w e d i n t h e i r own homes. F o r t h e p u r p o s e o f t h i s s t u d y , i t was a n t i c i p a t e d t h a t two i n t e r v i e w s w i t h e a c h p a r t i c i p a n t w o u l d p r o v i d e a s u f f i c i e n t r i c h n e s s o f d a t a . A l l p a r t i c i p a n t s were i n t e r v i e w e d t w i c e e x c e p t f o r one woman whose h u s b a n d d i e d i n t h e i n t e r v a l b e t w e e n t h e f i r s t and s e c o n d i n t e r v i e w . A b o u t one m o n t h ' s t i m e s e p a r a t e d a l l f i r s t and s e c o n d i n t e r v i e w s . As G l a s e r & S t r a u s s ( 1 9 6 7 ) 3 9 s u g g e s t , t h e r e s e a r c h e r n e e d e d t h i s t i m e f o r t h e p r a c t i c a l a s p e c t s o f t r a n s c r i b i n g t h e d a t a and n o t i n g c a t e g o r i e s and f o r t h e c o n t e m p l a t i o n n e c e s s a r y t o g a i n i n s i g h t s i n t o t h e d a t a . T he r e s e a r c h e r had o r i g i n a l l y a n t i c i p a t e d t h a t e a c h i n t e r v i e w w o u l d l a s t a b o u t one and o n e - h a l f h o u r s b u t , i n f a c t , i n t e r v i e w s v a r i e d i n l e n g t h f r o m 45 m i n u t e s t o t h r e e h o u r s . The p u r p o s e s and c o n t e n t o f t h e f i r s t and s e c o n d i n t e r v i e w s d i f f e r e d . The f i r s t i n t e r v i e w s e r v e d t o a s s e s s t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e u s i n g t h e d a t a c o l l e c t i o n g u i d e . In a c c o r d a n c e w i t h t h e m o d e l ' s a s s u m p t i o n o f i n t e r d e p e n d e n c y and i n t e r a c t i o n b e t w e e n s u b s y s t e m s , d i f f e r e n t a r e a s o f i n q u i r y were r e c o g n i z e d t o be i n t e r r e l a t e d . The s e c o n d i n t e r v i e w s e r v e d p r i m a r i l y t o d e v e l o p t h e m e s , c a t e g o r i e s , and c o n c e p t s e v o k e d by t h e d a t a a n d t o c l a r i f y t h e m e a n i n g o f s t a t e m e n t s made by p a r t i c i p a n t s i n f i r s t i n t e r v i e w s . F o r e x a m p l e , one p a r t i c i p a n t s t r e s s e d t h a t g e t t i n g t o know o t h e r r e s i d e n t s had h e l p e d h e r f e e l more c o m f o r t a b l e . S u b s e q u e n t l y , o t h e r p a r t i c i p a n t s were a s k e d i f t h e y had g o t t e n t o know o t h e r r e s i d e n t s and w h e t h e r t h e y had f o u n d i t h e l p f u l . D a t a A n a l y s i s D a t a a n a l y s i s i n t h i s s t u d y was m o d e l l e d a f t e r t h e c o n s t a n t c o m p a r a t i v e m e t h o d d e v e l o p e d by G l a s e r and 40 S t r a u s s ( 1 9 6 7 ) . T h i s m e t h o d i s c h a r a c t e r i z e d by t h e j o i n t c o l l e c t i o n , p r o c e s s i n g , and a n a l y s i s o f d a t a . I t i s u s e d t o g e n e r a t e d e s c r i p t i o n s o f "what t h e s i t u a t i o n i s , i n as f u l l as way as p o s s i b l e so t h a t t h e r e a d e r h as a p i c t u r e o f t h e e v e n t o r s i t u a t i o n he c a n r e l a t e t o " ( D i e r s , 1 9 7 9, p . 3 7 ) . In an e x p l o r a t o r y s t u d y , d a t a a n a l y s i s u l t i m a t e l y d e p e n d s "on t h e i n t e g r a t i v e p o w e r s o f i n v e s t i g a t o r s , on t h e i r a b i l i t y t o draw t o g e t h e r many d i v e r s e b i t s o f d a t a i n t o a u n i f i e d i n t e r p r e t a t i o n " ( S e l l t i z e t a l . , 1976 , p. 9 8 ) . The r e s e a r c h e r ' s i n t e r p r e t a t i o n i s v a l i d s i n c e i t i s drawn f r o m t h e d a t a ( S t e r n , 1 9 8 5 ) . I t i s r e l i a b l e i f " a r e a d e r , a d o p t i n g t h e same v i e w p o i n t as a r t i c u l a t e d by t h e r e s e a r c h e r , c a n a l s o s e e what t h e r e s e a r c h e r saw, w h e t h e r o r n o t he a g r e e s w i t h i t " ( G i o r g i , 1975, p. 9 6 ) . V e r i f i c a t i o n o f c a t e g o r i e s w i t h p a r t i c i p a n t s a l s o e n s u r e s t h e f i d e l i t y o f t h e r e s e a r c h e r ' s i n t e r p r e t a t i o n t o t h e i r e x p e r i e n c e ( S t e r n , 1 9 8 5 ) . D a t a p r o c e s s i n g and a n a l y s i s b e g a n i n t h e i n t e r v i e w s i t u a t i o n . The r e s e a r c h e r i n i t i a l l y s o r t e d d a t a as t h e y were r e c e i v e d a c c o r d i n g t o t h e p e r t i n e n t b a s i c human n e e d s . T h i s s e r v e d t o a l e r t t h e r e s e a r c h e r t o a r e a s n o t y e t c o v e r e d i n t h e i n t e r v i e w . The a u d i o - t a p e o f an i n t e r v i e w was t r a n s c r i b e d as so o n as p o s s i b l e a f t e r t h e i n t e r v i e w and b e f o r e s u b s e q u e n t i n t e r v i e w s . D u r i n g t h e t r a n s c r i p t i o n , t h e 41 r e s e a r c h e r n o t e d t h e d e m o g r a p h i c c h a r a c t e r i s t i c s o f t h e p a r t i c i p a n t . B r i e f b i o g r a p h i e s were c o m p o s e d f o r e a c h p a r t i c i p a n t i n o r d e r t o i n d i c a t e t h e c o n t e x t i n w h i c h t h e i n s t i t u t i o n a l i z a t i o n o f t h e s p o u s e o c c u r r e d . The c o m p l e t e d t r a n s c r i p t was s t u d i e d i n more d e p t h . B e g i n n i n g t h e m e s o r c l u s t e r s o f s i m i l a r i n f o r m a t i o n were n o t e d , c o n t r a s t e d , and c o m p a r e d and t h e n were v e r i f i e d o r d i s p r o v e d w i t h p a r t i c i p a n t s . B e c a u s e d a t a a n a l y s i s o c c u r r e d s i m u l t a n e o u s l y w i t h d a t a c o l l e c t i o n , t h e i n f o r m a t i o n g a i n e d f r o m an i n t e r v i e w w i t h one p a r t i c i p a n t was u s e d t o h e l p d i r e c t d a t a c o l l e c t i o n i n s u b s e q u e n t i n t e r v i e w s w i t h o t h e r p a r t i c i p a n t s and t o d e v e l o p t e n t a t i v e c a t e g o r i e s o f t h e m e s . The t h e m e s , e x p r e s s e d i n t h e p a r t i c i p a n t s ' own w o r d s , were t h e n c o d e d a c c o r d i n g t o t h e p u r p o s e o f t h e s t u d y — t h a t i s , t h e i m p a c t o f h a v i n g a s p o u s e i n t h e ECU on t h e i r l i v e s , t h e c o p i n g b e h a v i o u r s t h e y u s e d , and t h e f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g t h e s e c o p i n g b e h a v i o u r s . The f o r m a l c o d i n g was n o t done a c c o r d i n g t o t h e n i n e b a s i c human n e e d s b e c a u s e t h e p u r p o s e o f t h i s s t u d y d i r e c t e d a n a l y s i s t o w a r d v i e w i n g t h e v i s i t i n g s p o u s e p r i m a r i l y as a b e h a v i o u r a l s y s t e m r a t h e r t h a n as n i n e s u b s y t e m s . The t hemes w i t h i n e a c h o f t h e t h r e e m ain c o d i n g c a t e g o r i e s were t h e n f u r t h e r a n a l y z e d i n t o c o n c e p t s , c a t e g o r i e s , and t h e i r p r o p e r t i e s . T h e s e w e r e , i n t u r n , 42 s y n t h e s i z e d and i n t e g r a t e d i n t o a m e a n i n g f u l d e s c r i p t i o n o f t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e . E t h i c a l C o n s i d e r a t i o n s T h e r i g h t s o f t h e p a r t i c i p a n t s were p r o t e c t e d i n a number o f w a y s . The r i g h t s t o r e f u s e t o p a r t i c i p a t e , t o w i t h d r a w f r o m t h e s t u d y , o r t o t e r m i n a t e an i n t e r v i e w w ere g u a r a n t e e d . I n a d d i t i o n , p a r t i c i p a n t s w e re a s s u r e d v e r b a l l y and i n w r i t i n g t h a t t h e i r p a r t i c i p a t i o n o r n o n - p a r t i c i p a t i o n w o u l d i n no way a f f e c t t h e c a r e o f t h e i r s p o u s e s i n t h e ECU. No r i s k s w e re a n t i c i p a t e d . P a r t i c i p a n t s were a s s u r e d t h a t t h e s t a f f o f t h e ECU w o u l d n o t be i n f o r m e d o f t h e i r i n v o l v e m e n t and t h a t a l l t h e d a t a o b t a i n e d w o u l d be k e p t c o n f i d e n t i a l . No names were u s e d on t h e t a p e s , t r a n s c r i p t s , and o t h e r w r i t t e n r e c o r d s . P a r t i c i p a n t s were i n f o r m e d t h a t t h e t a p e s w o u l d be e r a s e d f o l l o w i n g t h e f i n a l a n a l y s i s a n d i n t e r p r e t a t i o n o f t h e d a t a . A r r a n g e m e n t s were made t o s e n d p a r t i c i p a n t s a summary o f t h e s t u d y on i t s c o m p l e t i o n . One e t h i c a l c o n s i d e r a t i o n was u n a n t i c i p a t e d . The p a r t i c i p a n t s were w e l l known i n t h e ECU. Many o f them had b e e n v i s i t i n g a l m o s t d a i l y f o r y e a r s . T h u s , t h e i r a c c o u n t s c o n t a i n i n f o r m a t i o n t h a t makes them r e a d i l y i d e n t i f i a b l e t o ECU s t a f f . The r e s e a r c h e r e l i m i n a t e d t h e more o b v i o u s i d e n t i f y i n g i n f o r m a t i o n f r o m t h e p r e s e n t a t i o n o f t h e a c c o u n t s w i t h o u t d e t r a c t i n g f r o m t h e i m p o r t o f t h e d a t a . 43 Summary T h i s c h a p t e r has d e s c r i b e d t h e m e t h o d o l o g y u s e d i n t h i s s t u d y . The c o n g r u e n c i e s b e t w e e n t h e UBC Model ( 1 9 8 0 ) and t h e r e s e a r c h d e s i g n were p r e s e n t e d . The s e t t i n g , t h e s a m p l e , and t h e d a t a c o l l e c t i o n and a n a l y s i s were d e s c r i b e d . F i n a l l y , e t h i c a l c o n s i d e r a t i o n s were n o t e d . 44 CHAPTER FOUR F i n d i n g s and I n t e r p r e t a t i o n T h i s c h a p t e r i s o r g a n i z e d i n t o f o u r m a j o r s e c t i o n s . The f i r s t s e c t i o n d e s c r i b e s t h e s a m p l e ; t h e s e c o n d d e t a i l s t h e p r o c e s s o f b e c o m i n g a v i s i t i n g s p o u s e ; a t h i r d , much l a r g e r s e c t i o n , d e s c r i b e s what i t i s l i k e t o be a v i s i t i n g s p o u s e ; a n d , t h e f o u r t h p r e s e n t s t h e c o r e c o n c e p t s . T he t h i r d s e c t i o n c o r r e s p o n d s t o t h e p u r p o s e o f t h e s t u d y by d e s c r i b i n g t h e i m p a c t o f h a v i n g a s p o u s e i n an ECU on t h e v i s i t i n g s p o u s e s ' l i v e s , t h e c o p i n g b e h a v i o u r s u s e d , a n d t h e f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g c o p i n g b e h a v i o u r s . B e c a u s e o f t h e i n t e r d e p e n d e n c y o f c o p i n g b e h a v i o u r s and f a c t o r s , t h e s e two a s p e c t s o f t h e p u r p o s e a r e c o m b i n e d i n t o one s u b s e c t i o n d e s c r i b i n g c l u s t e r s o f c o p i n g b e h a v i o u r s and i n f l u e n c i n g f a c t o r s . The f o u r t h s e c t i o n p r e s e n t s t h e t h r e e c o r e c o n c e p t s - - t h e c o n c e p t s h a v i n g t h e m o s t power t o e x p l a i n v a r i a t i o n s i n t h e d a t a ( M a x w e l l & M a x w e l l , 1 9 8 0 ) . T h r o u g h o u t t h i s c h a p t e r t h e f i n d i n g s and t h e i r i n t e r p r e t a t i o n a r e i n t e r w o v e n . The i n t e r p r e t a t i o n c i t e s l i t e r a t u r e t h a t was i n c l u d e d i n t h e s e c o n d c h a p t e r and i n t r o d u c e s a d d i t i o n a l l i t e r a t u r e t o e n r i c h t h e d i s c u s s i o n o f c o n c e p t s , c a t e g o r i e s , and themes drawn f r o m t h e d a t a . 45 The S ample The s a m p l e was r e l a t i v e l y h omogeneous ( N = 9 ) . The p a r t i c i p a n t s were e l d e r l y , r a n g i n g i n age f r o m 65 t o 80 y e a r s ( m e d i a n = 7 3 y e a r s ) . M o s t had been m a r r i e d t o t h e i r d i s a b l e d s p o u s e s f o r many y e a r s (mode=43 y e a r s ) a l t h o u g h one had been m a r r i e d f o r o n l y t h r e e y e a r s . A l l o f t h e p a r t i c i p a n t s l i v e d a l o n e ; f i v e l i v e d i n h o u s e s , f o u r i n a p a r t m e n t s . O n l y one l i v e d more t h a n f i v e m i l e s away f r o m t h e ECU. S e v e n p a r t i c i p a n t s w ere r e t i r e d , one had n e v e r w o r k e d o u t s i d e t h e home d u r i n g h e r m a r r i a g e , and one was s t i l l w o r k i n g . Of t h e s e v e n who were r e t i r e d , one had r e t i r e d d u r i n g t h e p e r i o d she had c a r e d f o r h e r h u s b a n d a t home, one had r e t i r e d two y e a r s a f t e r h i s w i f e e n t e r e d t h e ECU, and t h e r e m a i n d e r had r e t i r e d b e f o r e t h e o n s e t o f t h e i r s p o u s e s ' d i s a b i l i t y . S i x p a r t i c i p a n t s were m a l e an d t h r e e were f e m a l e . T h e i r d i s a b l e d s p o u s e s had l i v e d i n t h e ECU one t o s e v e n y e a r s ( m e d i a n = 3 y e a r s ) . F i v e r e q u i r e d i n s t i t u t i o n a l c a r e b e c a u s e o f t h e e f f e c t s o f c e r e b r o v a s c u l a r a c c i d e n t s , t h r e e b e c a u s e o f c h r o n i c n e u r o l o g i c a l d i s e a s e s s u c h as P a r k i n s o n ' s D i s e a s e , and one b e c a u s e o f o r g a n i c b r a i n s y n d r o m e . A l l d i s a b l e d s p o u s e s were p h y s i c a l l y d i s a b l e d and s e v e n o f t h e n i n e were c o g n i t i v e l y i m p a i r e d . The l i t e r a t u r e s u g g e s t s t h a t a s i g n i f i c a n t p r o p o r t i o n o f r e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s a r e a d m i t t e d d i r e c t l y f r o m home ( S m a l l e g a n , 1 9 8 5 ) . In 46 t h e p r e s e n t s t u d y , a l l o f t h e p a r t i c i p a n t s ' s p o u s e s were a d m i t t e d t o t h e ECU f r o m o t h e r i n s t i t u t i o n s - - s i x f r o m g e n e r a l h o s p i t a l s , two f r o m o t h e r E C U ' s , and one f r o m a r e h a b i l i t a t i o n h o s p i t a l . The a g e s o f t h e d i s a b l e d s p o u s e s r a n g e d f r o m 62 t o 84 y e a r s ( m e d i a n = 7 3 y e a r s ) . In c o n t r a s t , t h e a v e r a g e age o f r e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s i s 80 y e a r s ( A t c h l e y , 1980) and i n t h e ECU u s e d i n t h e p r e s e n t s t u d y t h e a v e r a g e age was a b o u t 82 y e a r s . T h u s , m ost o f t h e d i s a b l e d s p o u s e s were y o u n g e r t h a n t h e a v e r a g e r e s i d e n t . T h e r e a r e a number o f p o s s i b l e e x p l a n a t i o n s f o r t h e p r e p o n d e r a n c e o f men i n t h e s a m p l e and o f v i s i t i n g s p o u s e s whose d i s a b l e d p a r t n e r s were " y o u n g " r e s i d e n t s . The s a m p l i n g c r i t e r i a b i a s e d s e l e c t i o n t o w a r d v i s i t i n g s p o u s e s who were p h y s i c a l l y a b l e t o v i s i t and t h e r e f o r e t h e y and t h e i r d i s a b l e d s p o u s e s w ere l i k e l y t o be among t h e y o u n g e l d e r l y . In a d d i t i o n , f o c u s i n g on t h e m a r r i e d e l d e r l y b i a s e d t h e s a m p l e t o w a r d men s i n c e t h e g r e a t e r p r o p o r t i o n o f t h e m a r r i e d e l d e r l y i n t h e g e n e r a l p o p u l a t i o n a r e m a l e ( S t a t i s t i c s C a n a d a , 1 9 8 4 ) . The m a i n i n t e n t o f t h i s s t u d y was t o d e s c r i b e what i t i s l i k e t o h a v e a s p o u s e H n an i n s t i t u t i o n b u t i t became a p p a r e n t i n t h e f i r s t i n t e r v i e w t h a t p a r t i c i p a n t s v i e w e d t h e i r e x p e r i e n c e as h a v i n g b o t h o n g o i n g and s t a t i c e l e m e n t s . T h e r e was t h e p r o c e s s o f b e c o m i n g a v i s i t i n g s p o u s e as w e l l as t h e s t a t e o f b e i n g a v i s i t i n g s p o u s e . 47 The n e x t s e c t i o n d e s c r i b e s t h e p r o c e s s o f b e c o m i n g a v i s i t i n g s p o u s e . B e c o m i n g a V i s i t i n g S p o u s e The p a r t i c i p a n t s ' d e s c r i p t i o n s o f t h e i r l i v e s p r i o r t o t h e i n s t i t u t i o n a l i z a t i o n a s s u m e d t h e q u a l i t y o f s t o r i e s - - p e r s o n a l l y s i g n i f i c a n t n a r r a t i v e s whose p l o t s l o c a t e d b e i n g a v i s i t i n g s p o u s e w i t h i n t h e c o n t e x t o f t i m e . A l t h o u g h e a c h s t o r y was u n i q u e i n i t s d e t a i l s , f o u r p h a s e s were common t o m o s t o r a l l o f them. T h e s e w e r e : m a r r i e d l i f e ; t h e o n s e t o f t h e d i s a b i l i t y ; t h e c a r e g i v i n g p e r i o d ; a n d , t h e d e c i s i o n t o i n s t i t u t i o n a l i z e . M a r r i e d L i f e M o s t o f t h e p a r t i c i p a n t s s t a t e d t h a t t h e i r m a r r i e d l i v e s p r i o r t o t h e o n s e t o f t h e i r s p o u s e s ' d i s a b i l i t y had b e e n h a p p y . One woman s t r e s s e d t h a t she and h e r h u s b a n d had done e v e r y t h i n g t o g e t h e r . V i s i t i n g S p o u s e ( V S ) : He h e l p e d me w i t h e v e r y t h i n g I d i d . We w e re a l w a y s t o g e t h e r . We...went o u t t o g e t h e r , we came home t o g e t h e r , we s a t t o g e t h e r , we w o r k e d t o g e t h e r . O t h e r s d e s c r i b e d a more t r a d i t i o n a l d i v i s i o n o f l a b o u r w i t h i n t h e m a r i t a l r e l a t i o n s h i p b u t s t i l l e m p h a s i z e d t h e h a p p i n e s s o f t h e i r m a r r i e d l i v e s . 48 VS: We had a t e r r i f i c l i f e , I t h i n k . She was a h e c k o f a good c o o k , and a good h o u s e k e e p e r . She was a g o o d w i f e and a g o o d m o t h e r . T h a t m o s t o f t h e i r d e s c r i p t i o n s o f m a r r i e d l i f e w e r e so p o s i t i v e may be due t o an i d e a l i z a t i o n o f t h e p a s t l i k e t h a t o b s e r v e d by L o p a t a ( 1 9 7 3 ) and G l i c k e t a l . ( 1 9 7 4 ) among t h e b e r e a v e d . R e g a r d l e s s o f w h e t h e r t h e i r m e m o r i e s were a c c u r a t e , t h e v i s i t i n g s p o u s e s ' p o r t r a y a l o f m a r r i e d l i f e p r i o r t o t h e o n s e t o f t h e i r s p o u s e s ' d i s a b i l i t y r e f l e c t e d t h e i r p e r c e p t i o n s o f i t as a r e l a t i v e l y h a p p i e r t i me. O n s e t o f t h e D i s a b i l i t y F i v e p a r t i c i p a n t s d e s c r i b e d how t h e y became g r a d u a l l y aware t h a t s o m e t h i n g was wrong w i t h t h e i r h u s b a n d o r w i f e . VS: W e l l , he was d i a b e t i c and h e ' d a l w a y s b e e n a v e r y a c t i v e p e r s o n , g o l f e d 18 h o l e s p r a c t i c a l l y e v e r y day o f t h e week and t h e n he g o t so t h a t i n s t e a d o f p l a y i n g 18 h o l e s he w o u l d j u s t p l a y n i n e . T h i s i s when I n o t i c e d f i r s t , and t h e n j u s t one t h i n g , j u s t l i k e t h a t , and t h e n i t g o t so t h a t he, w e l l , h e ' d h a v e t o g e t up so many t i m e s a t n i g h t and one t h i n g and a n o t h e r and j u s t g e n e r a l l y l i k e t h a t u n t i l f i n a l l y he t o o k a s t r o k e . The f o u r o t h e r p a r t i c i p a n t s t o l d o f t h e s u d d e n o n s e t o f t h e c o n d i t i o n t h a t e v e n t u a l l y n e c e s s i t a t e d t h e i r s p o u s e s ' a d m i s s i o n t o t h e ECU. One man d e s c r i b e d t h e w o r s e n i n g o f h i s w i f e ' s l o n g s t a n d i n g d i s a b i l i t y and a s u d d e n e x a c e r b a t i o n . 49 VS: She b e g a n , o h , t e n y e a r s a g o , she b e g a n t o g e t w o r s e . Her l o w e r l i m b s were i n s u c h a s t a t e t h a t f i n a l l y s he went i n t o t h e w h e e l c h a i r . . . She c o u l d s t a n d up as l o n g as she had s o m e t h i n g t o hang o n t o a n d she g r a d u a l l y g o t w o r s e and w o r s e u n t i l s he c o u l d n ' t s t a n d a t a l l r e a l l y . . . a n d t h e n i n S e p t e m b e r . . . I t h i n k s h e ' d b e e n h o l d i n g b a c k a b i t , t h a t s h e was h a v i n g p r o b l e m s , and she g o t so s i c k we g o t t h e d o c t o r i n one m o r n i n g and s h e was o f f t o [ t h e h o s p i t a l ] by a m b u l a n c e t h a t m o r n i n g d i a g n o s e d as a b l o c k a g e o f t h e b o w e l . A n o t h e r d e s c r i b e d a s e q u e n c e o f e v e n t s , u n b r o k e n by a c a r e g i v i n g p e r i o d , p r e c e d i n g h i s w i f e ' s i n s t i t u t i o n a l i z a t i o n . VS: She had a m a s s i v e s t r o k e I u n d e r s t a n d . I t was f i v e y e a r s a g o . S h e . . . j u s t l e f t home f o r a few h o u r s a n d I had a phone c a l l t h a t she k e e l e d o v e r . I went down t o where t h i s h a p p e n e d and c a l l e d an a m b u l a n c e and t o o k h e r t o t h e [ h o s p i t a l ] . She was t h e r e f o r w e e k s , s e v e r a l w e e k s . I d i d n ' t know w h e t h e r s h e ' d make i t o r n o t . Q u i t e a t r y i n g s p e l l . B u t she hung on and was s e m i c o n s c i o u s f o r s e v e r a l w e e k s . She was a b o u t two months a t [ t h e h o s p i t a l ] . T h e n t h e y t o o k h e r t o a r e h a b i l i t a t i o n h o s p i t a l .. .She was t h e r e f o r a few months b u t t h e y d i d n ' t f i g u r e . . . t h e y c o u l d do a n y t h i n g f o r h e r . . . s o [ s h e ] had t o go o v e r t o an e x t e n d e d c a r e h o s p i t a l . . . S h e ' s b e e n t h e r e e v e r s i n c e . The C a r e g i v i n g P e r i o d M o s t (N=8) o f t h e p a r t i c i p a n t s had c a r e d f o r t h e i r d i s a b l e d s p o u s e s a t home b e f o r e h o s p i t a l i z a t i o n . The ma i n s o u r c e o f h e l p f o r t h e m a r r i e d d i s a b l e d e l d e r l y l i v i n g a t home a r e t h e i r s p o u s e s ( S h a n a s , 1979) a n d , i n d e e d , t h e p a r t i c i p a n t s i n t h i s s t u d y were t h e p r i m a r y c a r e g i v e r s . 50 VS: W e l l he t o o k a s t r o k e i n J u l y . . . a n d he was on t h e c r i t i c a l l i s t f o r s i x weeks and t h e n he r e c o v e r e d e n o u g h i n November t o come home. A f t e r t h a t we t o o k s e v e r a l t r i p s . He was i n a w h e e l c h a i r b u t he was a c t i v e , a l e r t , c o n v e r s a t i o n a l , and we had a l o t o f f u n a f t e r he came home. The c a r e g i v i n g p e r i o d v a r i e d i n l e n g t h f r o m t h r e e weeks t o 13 y e a r s (mode=3 y e a r s ) . As t h e p r e c e d i n g q u o t e i n d i c a t e s , c a r e g i v i n g had p o s i t i v e a s p e c t s b u t i t was a l s o a t i m e o f p h y s i c a l and m e n t a l h a r d s h i p f o r p a r t i c i p a n t s . VS: I t was two o r t h r e e w e e k s . I t was a v e r y t o u g h t h r e e weeks on me. R e s e a r c h e r ( R ) : What was t o u g h a b o u t t h o s e t h r e e w e e k s ? VS: W e l l , c l e a n i n g h e r up, j u s t l i k e a b a b y . P u t t i n g d i a p e r s on h e r and up d u r i n g t h e n i g h t . S h e ' d c a l l o u t and t r y i n g t o t u r n h e r o v e r . I'm n o t a y o u n g man. I t was r e a l l y q u i t e a s t r a i n . R: E v e n w i t h h e l p [ a homemaker] c o m i n g i n , i t w a s n ' t 24 h o u r s . VS: W e l l , h e l p was f o u r h o u r s i n t h e m o r n i n g . . . . I had 20 h o u r s a day t o l o o k a f t e r h e r . O t h e r s c o n s i d e r e d t h e m e n t a l s t r a i n o f c a r e g i v i n g h a r d e r t o b e a r . A m a l e p a r t i c i p a n t s t a t e d t h a t " a s f a r as t h e p h y s i c a l end o f i t , I d o n ' t t h i n k i t b o t h e r e d me t h a t much. I t was t h e m e n t a l t h a t r e a l l y b o t h e r e d me." As s t u d i e s o f c a r e g i v i n g s u g g e s t ( S a n f o r d , 1 9 7 5 ) , s e v e r a l (N=4) o f t h e p a s t c a r e g i v e r s i n t h e s a m p l e i d e n t i f i e d t h e l o s s o f s l e e p as a p r o b l e m a t i c a s p e c t o f t h e c a r e g i v i n g p e r i o d . VS: The h a r d e s t on me was t h a t he was i n c o n t i n e n t and I was up a l l n i g h t w i t h wet b e d s and s u c h and I t h i n k I g o t v e r y t i r e d . T h a t was t h e 51 h a r d e s t . . . I d i d n ' t g e t much s l e e p . I c o u l d n ' t r e s t i n t h e day t i m e b e c a u s e he w o u l d want s o m e t h i n g . S t u d i e s o f t e n comment on t h e s o c i a l and e m o t i o n a l i s o l a t i o n e x p e r i e n c e d by p e o p l e c a r i n g f o r t h e d i s a b l e d e l d e r l y a t home ( C r o s s m a n , L o n d o n , & B a r r y , 1981; G o l o d e t z , E v a n s , H e i n r i t z , & G i b s o n , 1 9 6 9 ) . In t h e p r e s e n t s t u d y , s e v e n p a s t c a r e g i v e r s d e s c r i b e d a g r a d u a l r e d u c t i o n i n s o c i a l p a r t i c i p a t i o n d u r i n g t h e c a r e g i v i n g p e r i o d . I n some s i t u a t i o n s , f r i e n d s i n i t i a l l y r a l l i e d a r o u n d b u t t h e n g r a d u a l l y w i t h d r e w t h e i r a t t e n t i o n s as t h e a c u t e p e r i o d e n d e d . The b e r e a v e d e x p e r i e n c e a s i m i l a r phenomenon ( G l i c k e t a l ., 1974 ) . VS: W e l l , y o u know we r a n i n t o t h e same t h i n g as most f a m i l i e s d o . When y o u h a v e a s i c k n e s s l i k e t h a t , y o u r f r i e n d s and y o u r n e i g h b o u r s r a l l y a r o u n d and g i v e y o u h e l p w i t h v a r i o u s t h i n g s a n d , a h , b r i n g i n l i t t l e g o o d i e s t h a t t h e y h a v e made and t h a t . B u t , as t i m e g o e s on t h o s e l i t t l e v i s i t s g e t f e w e r and f a r t h e r a p a r t , u n t i l a f t e r a p e r i o d o f t i m e . . . t h a t has s t o p p e d c o m p l e t e l y . Ah, as f a r as y o u r f r i e n d s and n e i g h b o u r s a r e c o n c e r n e d , y o u ' v e been w r i t t e n o f f . Y e a h , y o u ' r e s i c k , t h a t ' s f i n e , t h a t ' s y o u r p r o b l e m . The demands o f t h e c a r e g i v i n g p e r i o d n e c e s s i t a t e d l e s s s o c i a l c o n t a c t o u t s i d e t h e home. R: You were q u i t e s o c i a l and a c t i v e ? VS: Y e s v e r y . I t d w i n d l e d b e c a u s e o f a l l t h i s t i m e t h a t [my h u s b a n d ] n e e d e d . . . I h a v e n ' t e n l a r g e d my h o r i z o n s g r a d u a l l y l i k e I maybe s h o u l d h a v e . One p a r t i c i p a n t , t h o u g h , d e l i b e r a t e l y d i d n o t d e c r e a s e h e r s o c i a l p a r t i c i p a t i o n d u r i n g t h e c a r e g i v i n g p e r i o d . R: So y o u d i d n ' t c u t down? VS: No, I d i d n ' t t h i n k i t was good t o . 52 R: Can y o u s a y a l i t t l e more a b o u t t h a t ? VS: You h a v e t o k e e p w e l l y o u r s e l f and y o u ' r e n o t much company i f y o u d o n ' t g e t o u t and know a l i t t l e o f w h a t ' s g o i n g on i n t h e w o r l d . So y o u have t o do t h a t as l o n g as y o u d o n ' t o v e r d o i t , y o u know. The D e c i s i o n t o I n s t i t u t i o n a l i z e In d i s c u s s i n g t h e d e c i s i o n t o a d m i t t h e i r d i s a b l e d s p o u s e s t o t h e ECU, t h e p a r t i c i p a n t s d e t a i l e d t h e r e a s o n s f o r t h e d e c i s i o n and t h e i r f e e l i n g s a b o u t t h e i n s t i t u t i o n a l i z a t i o n . T h e s e n s e o f b u r d e n e x p e r i e n c e d by c a r e g i v e r s i s o f t e n d e s c r i b e d as t h e i m p e t u s f o r t h e i n s t i t u t i o n a l i z a t i o n o f an e l d e r l y d i s a b l e d r e l a t i v e ( Z a r i t , R e e v e r , & B a c h - P e t e r s o n , 1 9 8 0 ) . In t h e p r e s e n t s t u d y , t h e m a j o r i t y (N=5) o f t h e p a s t c a r e g i v e r s a s c r i b e d t h e d e c i s i o n more t o t h e a c t u a l o r t h r e a t e n e d d e t e r i o r a t i o n o f t h e i r own h e a l t h . T h i s p r o b a b l y r e f l e c t s t h e o l d e r age o f t h e p a r t i c i p a n t s i n t h i s s t u d y , s i n c e m o s t s t u d i e s on c a r e g i v i n g a t home ha v e y o u n g e r s u b j e c t s i n t h e i r s a m p l e s . M o s t o f t h e p a r t i c i p a n t s d e s c r i b e d t h e i r d i s a b l e d s p o u s e s d u r i n g t h e p e r i o d b e f o r e i n s t i t u t i o n a l i z a t i o n as r e q u i r i n g t o t a l a s s i s t a n c e i n m o st o r a l l o f t h e a c t i v i t i e s o f d a i l y l i v i n g . E v e n s o , some d e l a y e d t h e d e c i s i o n t o i n s t i t u t i o n a l i z e f o r as l o n g as two y e a r s . VS: I t g o t t o t h e p o i n t where we [ v s and homemaker] j u s t w e r e n ' t a b l e t o c o p e w i t h h e r a t home. I t 53 was j u s t a b i t t o o much and t h e d o c t o r a d v i s e d me t h a t we w o u l d b o t h end up i n t h e h o s p i t a l u n l e s s I d i d s o m e t h i n g a b o u t i t . . . a n d I c a r r i e d on f o r a n o t h e r c o u p l e o f y e a r s o r more an d i t e n d e d up t h a t I j u s t c o u l d n ' t c o p e . The i n s t i t u t i o n a l i z a t i o n o f one p a r t i c i p a n t ' s w i f e was f o r c e d by h i s own a c u t e i l l n e s s . VS: I was a b l e t o l o o k a f t e r h e r h e r e f o r a l m o s t f i v e y e a r s w i t h a l i t t l e h e l p f r o m h o m e m a k e r s . . . b u t I w a s n ' t f e e l i n g t o o w e l l . I went t o t h e d o c t o r , he s e n t me t o a s p e c i a l i s t . T h e y f o u n d t h a t I had c a n c e r o f t h e bowel .... B u t , b e f o r e t h e y p u t me i n h o s p i t a l , t h e y had t o p u t my w i f e i n h o s p i t a l , b e c a u s e t h e r e was no o t h e r way o f t a k i n g c a r e o f h e r . In h i s c a s e , as i n t h r e e o t h e r s , t h e d e c i s i o n t o i n s t i t u t i o n a l i z e was i n f l u e n c e d o r , i n d e e d , d e t e r m i n e d by a d o c t o r ' s c o n c e r n f o r t h e c a r e g i v i n g s p o u s e ' s h e a l t h . R: D i d y o u h a v e any i n p u t i n t o t h e d e c i s i o n ? VS: The d o c t o r knew t h a t I w a s n ' t g o i n g t o be a b l e t o t a k e c a r e o f h e r , a n d , he k e p t h e r i n t h e h o s p i t a l u n t i l a b e d became a v a i l a b l e , i n t h e ECU, and he j u s t t o l d me, w e l l , s h e ' s b e e n moved t o t h e ECU now, w h e r e s h e ' l l be t a k e n c a r e o f - - y o u j u s t r e l a x . One o t h e r p a r t i c i p a n t w o u l d h a v e c o n t i n u e d c a r i n g f o r h e r h u s b a n d a t home i f h e r d o c t o r had n o t e x p r e s s e d c o n c e r n f o r t h e d i s a b l e d s p o u s e ' s q u a l i t y o f l i f e . VS: So he was p u t i n i n n o t h i n g f l a t . . . n o t o v e r my p r o t e s t s b u t n o t w i t h my a c t i v e c o n s e n t . . . T h e o n l y way I c o u l d t a k e him home was t o k e e p him i n b e d . I s u g g e s t e d t h a t t o t h e d o c t o r and he s a i d t h a t t h a t w o u l d be an a w f u l t h i n g t o do t o h i m . He s a i d t h a t h e ' s s t i l l g o t a l i f e a h e a d o f h i m . He c a n ' t j u s t l i e i n bed f o r t h e r e s t o f i t . The p a r t i c i p a n t s a s s o c i a t e d f e e l i n g s o f r e l i e f and r e g r e t w i t h t h e i n s t i t u t i o n a l i z a t i o n o f t h e i r d i s a b l e d 54 s p o u s e s . G e o r g e ( 1 9 8 4 a ) s u g g e s t e d t h a t t h e b u r d e n o f c a r e g i v i n g c o n t i n u e s s i n c e i n s t i t u t i o n a l i z a t i o n may o n l y s u b s t i t u t e one s e t o f a n x i e t i e s f o r a n o t h e r . The p a s t c a r e g i v e r s i n t h e p r e s e n t s t u d y saw t h e i n s t i t u t i o n a l i z a t i o n o f t h e i r s p o u s e s more p o s i t i v e l y b e c a u s e i t r e l i e v e d them o f t h e o n g o i n g s t r a i n o f c a r e g i v i n g a t home. In one p a r t i c i p a n t ' s s t o r y , i t was p e r c e i v e d as r e s u l t i n g i n an i m p r o v e m e n t i n h i s w i f e ' s c o n d i t i o n . VS: I t h i n k t h a t s h e ' s b e t t e r o f f t h e r e t h a n she w o u l d be h e r e anyway b e c a u s e t h e r e she g e t s b e t t e r a t t e n t i o n and s h e ' s more r e l a x e d and I'm p h y s i c a l l y b e t t e r o f f b e c a u s e I'm n o t up i n t h e n i g h t two o r t h r e e t i m e s t o c a r e f o r h e r and I g e t a l i t t l e o u t s i d e a c t i v i t y . I know what i t was l i k e when she f i n a l l y went t h e r e . I t was g e t t i n g a l i t t l e r o u g h . The p a r t i c i p a n t s r e c o g n i z e d t h e i m p o s s i b i l i t y o f c a r i n g f o r t h e i r d i s a b l e d s p o u s e s a t home. VS: I knew I c o u l d n ' t p o s s i b l y h a v e t a k e n c a r e o f h e r a t home. I r e a l i z e d t h a t v e r y q u i c k l y . I w i s h e d I c o u l d . " I w i s h e d I c o u l d " was a common theme t h a t t e m p e r e d any r e l i e f t h e y may h a v e f e l t . A l t h o u g h t h e l i t e r a t u r e s u g g e s t s t h a t f a m i l y members f e e l g u i l t y a b o u t i n s t i t u t i o n a l i z i n g t h e i r e l d e r l y r e l a t i v e s , t h e p a r t i c i p a n t s e x p r e s s e d r e g r e t r a t h e r t h a n g u i l t o v e r t h e i r s p o u s e s ' i n s t i t u t i o n a l i z a t i o n . When a s k e d d i r e c t l y w h e t h e r t h e y f e l t any g u i l t , t h e i n i t i a l r e s p o n s e o f some p a r t i c i p a n t s was p a r t i c u l a r l y i n t e r e s t i n g . 55 VS: I ' v e t h o u g h t b a c k s i n c e d u r i n g t h e l a s t f i v e y e a r s t r y i n g t o f i g u r e o u t i f I s h o u l d h a v e known o r . . . what I c o u l d h a v e done t o p r e v e n t s u c h a t h i n g anyway. T h e s e r e s p o n s e s s u g g e s t t h a t p a r t i c i p a n t s had s o u g h t e x p l a n a t i o n s f o r t h e i r s p o u s e s ' d i s a b i l i t y , as t h e b e r e a v e d do f o r t h e d e a t h o f a s p o u s e , t h r o u g h an o b s e s s i o n a l r e v i e w o f t h e p a s t ( G l i c k e t a l . , 1 9 7 4 ) . When t h e r e s e a r c h e r c l a r i f i e d t h e i n t e n t o f t h e q u e s t i o n , t h e p a r t i c i p a n t s r e f e r r e d t o t h e i m p o s s i b i l i t y o f c a r i n g f o r t h e i r d i s a b l e d s p o u s e s a t home and t o t h e a f f e c t i v e b o n d b e t w e e n s p o u s e s . VS: I c a n u n d e r s t a n d y o u n g e r p e o p l e h a v i n g g u i l t f e e l i n g s i f i t i s t h e i r m o t h e r o r f a t h e r , h a v i n g a b i t o f a g u i l t f e e l i n g t h a t , w e l l , t h e y d i d n ' t want t o p l a c e them t h e r e b u t t h e y d i d n ' t h a v e room f o r him a t home o r w h a t e v e r so t h e y m i g h t h a v e . . . . B u t when i t ' s a s p o u s e up a r o u n d my age b r a c k e t I d o n ' t t h i n k t h a t y o u ' l l f i n d a n y b o d y w i t h g u i l t f e e l i n g . . . . ' c a u s e  o l d e r p e o p l e d o n ' t want t o g e t r i d o f t h e i r  s p o u s e s . And as a n o t h e r p a r t i c i p a n t s t a t e d , " t h e ECU was t h e o n l y a l t e r n a t i v e . " An u n d e r l y i n g a s s u m p t i o n o f t h i s s t u d y was t h a t t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e i s a d i s c r e t e e v e n t e n d i n g one way o f l i f e a nd i n t r o d u c i n g a n o t h e r f o r t h e v i s i t i n g s p o u s e . I n s t e a d , t h e p a r t i c i p a n t s i n d i c a t e d t h a t t h e i r way o f l i f e had c h a n g e d b e f o r e t h e i n s t i t u t i o n a l i z a t i o n a n d , f o r some, many y e a r s b e f o r e . One man s t a t e d t h a t " t h e b i g g e s t c h a n g e i s when we 56 s t o p p e d g o i n g a n y w h e r e , and she was c o n f i n e d t o t h e h o u s e . " T h e i r d e s c r i p t i o n s o f when t h e i r l i v e s c h a n g e d s u p p o r t P a r k e s ' s ( 1 9 7 1 ) and M a r r i s ' s ( 1 9 7 5 ) c o n c e p t u a l i z a t i o n o f m a j o r l i f e c h a n g e s . The p a r t i c i p a n t s ' " c r i s e s o f d i s c o n t i n u i t y " o r " p s y c h o - s o c i a l t r a n s i t i o n s " o c c u r r e d when t h e y r e a l i z e d t h e i r l i v e s were i r r e v o c a b l y c h a n g e d . I n s t i t u t i o n a l i z a t i o n o f a s p o u s e t h e n a s s u m e s t h e s t a t u s o f a m a r k e r e v e n t i n d i c a t i n g t h a t a p r o c e s s o f c h a n g e i s t a k i n g p l a c e . In summary, t h e p a r t i c i p a n t s ' s t o r i e s b e g a n w i t h t h e i r r e m e m b r a n c e s o f m a r r i e d l i f e a nd d e s c r i b e d t h e p r o c e s s t h a t r e s u l t e d i n t h e i r b e i n g v i s i t i n g s p o u s e s . F o r m o s t , t h i s p r o c e s s c o n s i s t e d o f t h e o n s e t o f t h e i r s p o u s e s ' d i s a b i l i t y , a c a r e g i v i n g p e r i o d w h i c h e x a c t e d a t o l l on t h e i r m e n t a l o r p h y s i c a l h e a l t h o r b o t h , and e n d e d w i t h t h e d i s a b l e d s p o u s e s ' h o s p i t a l i z a t i o n a nd t h e d e c i s i o n t o i n s t i t u t i o n a l i z e . The p a r t i c i p a n t s a s c r i b e d t h e i r l a c k o f g u i l t t o t h e i r k n o w l e d g e o f t h e i m p o s s i b i l i t y o f c a r i n g f o r t h e i r d i s a b l e d s p o u s e s a t home. The i n s t i t u t i o n a l i z a t i o n o f a s p o u s e was n o t t h e c r i s i s t h e l i t e r a t u r e p o r t r a y e d i t t o b e . R a t h e r , i t was p a r t o f a p r o c e s s o f c h a n g e w h i c h b e g a n w i t h t h e p a r t i c i p a n t s ' r e a l i z a t i o n t h a t t h e i r s p o u s e s ' 57 d i s a b i l i t i e s r e q u i r e d a c h a n g e i n t h e way t h e y v i e w e d t h e w o r l d and t h e m s e l v e s . B e i n g a V i s i t i n g S p o u s e I m p a c t on T h e i r L i v e s D u r i n g t h e i n t e r v i e w s , one c o u l d s e n s e t h e d i s t r e s s o f some p a r t i c i p a n t s and t h e r e l a t i v e c o n t e n t m e n t o f o t h e r s . R e g a r d l e s s o f t h e s e v a r i a t i o n s , a l l p a r t i c i p a n t s e x p e r i e n c e d t h e i m p a c t o f b e i n g a v i s i t i n g s p o u s e as c h r o n i c l o n e l i n e s s and p r e o c c u p a t i o n w i t h t h e d i s a b l e d s p o u s e . T h e s e two c o n c e p t s r e p r e s e n t t h e e n d u r i n g c o n d i t i o n s w i t h w h i c h t h e y had t o l i v e as a r e s u l t o f h a v i n g a s p o u s e i n an ECU and were i n d i c a t o r s o f b e h a v i o u r a l s y s t e m i m b a l a n c e . L o n e ! i n e s s . One p a r t i c i p a n t r e f e r r e d t o h i m s e l f and o t h e r v i s i t i n g s p o u s e s as "us p o o r o l d l o n e l y p e o p l e . " As he s u g g e s t e d , a l l t h e p a r t i c i p a n t s d e s c r i b e d t h e m s e l v e s as l o n e l y . L o n e l i n e s s was a c o n t i n u a l s o u r c e o f a n g u i s h f o r some a n d , f o r o t h e r s , i t was an a c c e p t e d , a l b e i t u n d e s i r a b l e , p a r t o f t h e i r l i v e s . VS: You g e t p r e t t y l o n e s o m e . I t h i n k t h i s i s t h e h a r d e s t p a r t . I r e a l l y d o . VS: I'm a l w a y s 1 o n e l y . B e i n g o l d i s o f t e n e q u a t e d w i t h b e i n g l o n e l y ( P e p l a u , B i k s o n , Rook, & G o o d c h i l d s , 1 9 8 2 ) . B u t t h e l i t e r a t u r e s u g g e s t s t h a t o n l y a s m a l l p r o p o r t i o n o f t h e e l d e r l y , a b o u t 2 5 % , r e p o r t f e e l i n g s o f l o n e l i n e s s ( T o w n s e n d , 1973; Wenger, 1 9 8 2 ) . I n d e e d , c o m p a r e d t o o t h e r age g r o u p s , " s e l f - r e p o r t e d l o n e l i n e s s i s l e s s common among o l d p e r s o n s " ( P e p l a u e t a l . , p. 3 3 2 ) . T h u s , t h e r e p o r t i n g o f l o n e l i n e s s by a l l t h e p a r t i c i p a n t s i n t h e p r e s e n t s t u d y was u n a n t i c i p a t e d . T h e i r d e s c r i p t i o n s o f l o n e l i n e s s , o f t h e f o r m s i t t o o k , and o f i t s a s s o c i a t e d f e e l i n g s c o m p r i s e t h e r e s t o f t h e d i s c u s s i o n o f t h i s c o n c e p t . P a r t i c i p a n t s d e s c r i b e d t h e i r l o n e l i n e s s i n a number o f w a y s . VS: B u t i t i s a l o n e l y s o r t o f a l i f e now. I t r e a l l y i s . I t ' s p r e t t y e mpty. VS: T h e r e ' s q u i t e a v o i d t h e r e y o u know. VS: Y o u r l i f e i s n o t e x a c t l y t h e same. Y o u ' r e b r e a k i n g o f f h a l f o f y o u r l i f e r e a l l y . VS: [My l i f e ] i s a vacuum. We s p e n t 30 y e a r s t o g e t h e r . I t s o r t o f becomes p a r t o f y o u r l i f e . The s e n s a t i o n o f t h e r e b e i n g a " h o l e i n t h e s e l f " ( R u b e n s t e i n & S h a v e r , p. 221, 1982) i s a common m e t a p h o r f o r l o n e l i n e s s . T a k e n t o g e t h e r , t h e w o r d s "empty," " v o i d , " " b r e a k i n g o f f , " and "vacuum" a l s o i m p l y b e i n g d e p r i v e d o f s o m e t h i n g t h a t was o n c e p a r t o f o n e ' s s e l f . The l o n e l i n e s s o f widows i s o f t e n e x p e r i e n c e d as a r e l a t i v e d e p r i v a t i o n , " n o t i n c o m p a r i s o n t o o t h e r p e o p l e , b u t t o o n e ' s own p a s t , when t h e h u s b a n d was w e l l and l i f e 59 was m o v i n g a l o n g i n an e s t a b l i s h e d way" ( L o p a t a , H e i n e m a n n , & Baum, p. 323, 1 9 8 2 ) . The f o r m s o f l o n e l i n e s s i d e n t i f i e d by t h e v i s i t i n g s p o u s e s r e f l e c t e d t h e i r s e n s e o f r e l a t i v e d e p r i v a t i o n . The v i s i t i n g s p o u s e s r e p o r t e d s e v e n f o r m s o f l o n e l i n e s s , s i x o f w h i c h b o r e some s i m i l a r i t y t o t h o s e i d e n t i f i e d by L o p a t a ( 1 9 6 9 ) . In t h e p r e s e n t s t u d y , p a r t i c i p a n t s were l o n e l y f o r : c o m p a n i o n s h i p ; t h e d i s a b l e d s p o u s e s ' p e r f o r m a n c e o f c e r t a i n t a s k s ; someone t o d i s c u s s p r o b l e m s o r d e c i s i o n s w i t h ; t h e p r e s e n c e o f a n o t h e r p e r s o n i n t h e h o u s e ; a c o n f i d a n t e ; and b e i n g p a r t o f a c o u p l e . L o p a t a ( 1 9 6 9 ) had a l s o o b s e r v e d t h a t one c a n f e e l l o n e l y f o r t h e p a s t , p r e s e n t o r f u t u r e . The s e v e n t h f o r m o f l o n e l i n e s s e x p r e s s e d by t h e v i s i t i n g s p o u s e s was a l o n g i n g f o r what c o u l d h a v e b e e n o r what s h o u l d h a v e b e e n . F i r s t , v i s i t i n g s p o u s e s (N = 7) were l o n e l y f o r t h e c o m p a n i o n s h i p o f t h e i r d i s a b l e d s p o u s e s . VS: You know i f t h e w i f e was s i t t i n g down t a l k i n g , e v e n i f we d o n ' t c o n v e r s e v e r y much, t h e company, t h a t we've b e e n m a r r i e d now g o i n g on 44 y e a r s . Or e v e n j u s t someone t o s h a r e e x p e r i e n c e s w i t h . VS: You know, y o u go t o a show by y o u r s e l f . . . y o u come o u t ; t h e r e ' s no one t o s h a r e i t w i t h . You go on a t r i p . No one t o s h a r e i t w i t h , y o u s e e . T h i s c o m p a n i o n s h i p c o u l d n o t be p r o v i d e d by o t h e r s . VS: E v e n i f y o u t r a v e l l e d w i t h any o f y o u r r e l a t i v e s . I g o t a b r o t h e r h e l i k e s t o 60 t r a v e l a l s o , and h i s w i f e c o u l d n ' t c a r e l e s s i f she t r a v e l s o r n o t and I t o o k a c o u p l e o f t r i p s w i t h him t o o , b u t , a h , i t ' s n o t t h e same. I t ' s n o t t h e same as g o i n g w i t h y o u r h u s b a n d o r wi f e . S e c o n d , p a r t i c i p a n t s (N=6) m i s s e d t h e i r d i s a b l e d s p o u s e s as someone t o d i s c u s s p r o b l e m s o r d e c i s i o n s w i t h . VS: T h a t becomes t h e d i f f i c u l t p a r t o f i t . Nobody t o e v e n t a l k o v e r w i t h — y o u may n o t a l w a y s g e t a l o n g t h a t w e l l , on d i f f e r e n t s u b j e c t s — y o u may n o t want t o go somewhere t h a t I ' d l i k e t o go, b u t y o u c a n c o m p r o m i s e , y o u c a n t a l k t h i n g s o v e r , n o b o d y t o t a l k t h i n g s o v e r now. T h i r d , p a r t i c i p a n t s (N=5) were l o n e l y f o r t h e d i s a b l e d s p o u s e s ' p e r f o r m a n c e o f c e r t a i n t a s k s . VS: I m i s s e d h i m . I t was h o r r i b l e . I m i s s e d h i m h e l p i n g w i t h t h e d i s h e s . . . . W h e n I was c o o k i n g o r b a k i n g he u s e d t o c h o p t h e n u t s o r g r a t e t h e c h e e s e o r w h a t e v e r was g o i n g t o be n e e d e d t o be done f o r my b a k i n g . . . . B y t h e t i m e I g o t i t i n t h e o v e n h e ' d h a v e i t a l l w a s h e d up. I was s p o i l e d r o t t e n y o u know, b u t we were ha p p y t o g e t h e r . So, t h a t ' s t h e way i t was and I s t i l l m i s s h i m . When I go t o do s o m e t h i n g I t h i n k , y i k e s , I ' v e g o t t o do t h i s a l l m y s e l f . VS: She was a g o o d h o u s e k e e p e r a n d a v e r y g o o d c o o k , t h a t ' s s o m e t h i n g I m i s s . F o u r t h , a few (N=4) j u s t m i s s e d t h e p r e s e n c e o f a n o t h e r p e r s o n i n t h e h o u s e . VS: You go t o bed a t n i g h t , t h e r e ' s n o b o d y t o s a y g o o d n i g h t t o . You g e t up i n t h e m o r n i n g and t h e r e ' s n o b o d y t o s a y g o o d m o r n i n g t o a n d , u n l e s s y o u go o u t , y o u c a n s p e n d t h e e n t i r e day i n and a r o u n d t h e h o u s e and n e v e r s p e a k a w ord b e c a u s e t h e r e ' s n o b o d y t o s p e a k t o . F i f t h , o n l y one p a r t i c i p a n t e x p r e s s e d m i s s i n g h i s w i f e as a c o n f i d a n t e a l t h o u g h t h i s f o r m o f l o n e l i n e s s was i m p l i e d by o t h e r p a r t i c i p a n t s . 61 R: I s t h e r e no one t h a t y o u t a l k a b o u t t h e s e t h i n g s t o ? VS: W e l l y o u t a l k t o y o u r f a m i l y . B u t e v e n t h e n I d o n ' t know how much y o u t e l l y o u r s i s t e r s o r b r o t h e r s . You know t h e r e a r e c e r t a i n t h i n g s t h a t y o u o n l y t a l k t o y o u r w i f e a b o u t . L i k e y o u [ t h e r e s e a r c h e r ] p r o b a b l y t a l k t o y o u r h u s b a n d . S i x t h , some p a r t i c i p a n t s (N=3) m i s s e d b e i n g p a r t o f a c o u p l e . VS: M y s e l f w i t h t h e w i f e i n t h e h o s p i t a l now,... most p e o p l e i f t h e r e ' s c o u p l e s , t h e y d o n ' t w i s h t o ask me a r o u n d . I'm by m y s e l f . T h e y j u s t d o n ' t a s k y o u b e c a u s e t h e y f e e l y o u m i g h t be u n c o m f o r t a b l e , s o m e t i m e s , maybe f o r them t o o . So, i t ' s q u i t e a c h a n g e . One woman, w h i l e r e c o g n i z i n g t h e c h a n g e i n how p e o p l e v i e w e d h e r , f e l t t h a t h e r " s i n g l e " s t a t u s had w o r k e d t o h e r a d v a n t a g e . VS: I h a v e more f r i e n d s . . . . I h a v e grown h a p p i l y more f r i e n d l y w i t h them b e c a u s e I c a n i d e n t i f y w i t h them. T h e y ' r e a l l widows and I t h i n k t h e y l i k e me b e t t e r s i n c e I was a l o n e . W e l l , y o u knew, widows f i n d i t d i f f i c u l t c o m i n g i n t o a h o u s e w i t h a c o u p l e and I f o u n d t h a t o v e r and o v e r a g a i n a n d now I know why. S e v e n t h , s e v e r a l (N=4) o f t h e v i s i t i n g s p o u s e s e x p r e s s e d l o n e l i n e s s f o r what c o u l d h a v e been o r what s h o u l d h a v e b e e n . The l o n g i n g f o r what c o u l d h a v e b e e n was o f t e n t h e d i s a p p o i n t m e n t t h a t t r a v e l l i n g had c e a s e d . The l o n g i n g f o r what s h o u l d h a v e b e e n was c o n g r u e n t w i t h N e u g a r t e n ' s ( 1 9 7 0 ) c o n c e p t o f o f f - t i m e e v e n t s . Two p a r t i c i p a n t s , i n p a r t i c u l a r , saw t h e i r w i v e s ' d i s a b i l i t y and i n s t i t u t i o n a l i z a t i o n as i n c o n s i s t e n t w i t h t h e i r m e n t a l " t i m e t a b l e s . " 62 VS: I mean we b o t h w o r k e d h a r d a n d we g o t t o t h e p o i n t w h e r e we c o u l d s o r t o f s t a r t e n j o y i n g l i f e — t h e k i d s were r a i s e d and o b l i g a t i o n s were f a r l e s s . A f t e r y o u work f o r a w h i l e y o u f e e l y o u c a n s t a r t t o t a k e o f f and i f y o u c a n ' t y o u s o r t o f f e e l c h e a t e d . R: When y o u s a y c h e a t e d , y o u were r e a l l y c h e a t e d o f y o u r f u t u r e t o g e t h e r ? VS: T h a t ' s r i g h t . R i g h t now, I mean, y o u r e a l l y s h o u l d be e n j o y i n g l i f e . You s h o u l d be f r e e t o t a k e o f f i f we w a n t e d t o t a k e o f f . To v a r y i n g d e g r e e s , t h e p a r t i c i p a n t s e x p r e s s e d f e e l i n g s o f d e p r e s s i o n , o f p u r p o s e l e s s n e s s a n d b o r e d o m , and o f l o w s e l f - e s t e e m . R u b e n s t e i n and S h a v e r ( 1 9 8 2 ) o b s e r v e d t h a t t h e r e i s a " w e l l - w o r n p a t h f r o m l o n e l i n e s s t o d e p r e s s i o n " ( p . 2 1 9 ) . S e v e r a l (N=4) o f t h e p a r t i c i p a n t s s t a t e d t h e y f e l t d e p r e s s e d some o r most o f t h e t i m e . W e i s s ( 1 9 7 3 ) , i n h i s i n f l u e n t i a l book on l o n e l i n e s s , o b s e r v e d t h a t when no one i s p r e s e n t t o w i t n e s s o r a f f i r m t h e i m p o r t a n c e o f o u r d a i l y l i v e s , t a s k s l o s e t h e i r m e a n i n g . He n o t e d t h e " t h e d a y ' s d u t i e s t h e n a r e a b u r d e n s o m e r i t u a l w h i c h one c a n h a r d l y p e r s u a d e o n e s e l f t o o b s e r v e " ( p . 2 2 ) . The s t a t e m e n t s o f f o u r p a r t i c i p a n t s , a l l e x p r e s s i n g f e e l i n g s o f p u r p o s e l e s s n e s s o r b o r e d o m , c o n f i r m t h e wisdom o f W e i s s ' s o b s e r v a t i o n . VS: I c a n t e l l I'm g e t t i n g a w f u l l y s t a l e r i g h t now. The o f f i c e i s a d r u d g e r y . I know r i g h t now I'm n o t p r o d u c i n g what I s h o u l d b e c a u s e I j u s t c a n ' t seem t o g e t i n t o i t . I ' v e g o t l o t s t o do. I j u s t d o n ' t l i k e t o g e t a t i t . And I know I s h o u l d g e t away f r o m i t and t a k e a n o t h e r r u n a t i t . I d o n ' t . 63 A n o t h e r p a r t i c i p a n t r e f e r r e d r e p e a t e d l y t o h i s " p o i n t l e s s e x i s t e n c e . " VS: I mean I'm n o t , a h , t a k i n g much i n t e r e s t i n a n y t h i n g . J u s t g e t up and s t r u g g l e t h r o u g h e a c h d a y . . . , p u t e v e r y day b e h i n d me and e v e r y day i s as same as t h e day b e f o r e . L o n e l i n e s s and l o w e r e d s e l f - e s t e e m " a r e i n t i m a t e l y and r e c i p r o c a l l y r e l a t e d " ( P e p l a u , M i c e l i , & M o r a s c h , 1982, p . 1 4 6 ) . M o s t p a r t i c i p a n t s (N=6) e x p r e s s e d f e e l i n g s o f d i s s a t i s f a c t i o n w i t h t h e m s e l v e s o r o f l o w e r e d s e l f - e s t e e m . One p a r t i c i p a n t e x p l a i n e d , " I g u e s s y o u k i n d o f g e t t o . . . n o t t h i n k t h a t much o f y o u r s e l f . " A n o t h e r s t a t e d , "I'm n o t much go o d t o a n y b o d y i n t h i s w o r l d . " The r e a s o n f o r t h e r e l a t i o n s h i p b e t w e e n l o n e l i n e s s and low s e l f - e s t e e m l i e s w i t h how we f o r m and m a i n t a i n o u r i d e n t i t i e s . O t h e r p e o p l e , e s p e c i a l l y a s i g n i f i c a n t o t h e r , c o n f i r m and s u p p o r t an i n d i v i d u a l ' s i d e n t i t y ( M c C a l l & Simmons, 1 9 6 6 ) . When t h e s i g n i f i c a n t o t h e r i s l o s t o r a b s e n t , o n e ' s s e n s e o f i d e n t i t y and s e l f - e s t e e m s u f f e r s . I t i s n o t s u r p r i s i n g t h e n t o f i n d t h a t t h e p a r t i c i p a n t s i n t h i s s t u d y e x p r e s s e d f e e l i n g s o f low s e l f - e s t e e m . The e x i s t e n c e o f c o g n i t i v e i m p a i r m e n t s i n m o s t o f t h e d i s a b l e d s p o u s e s l i m i t e d t h e i r a b i l i t y t o c o n f i r m and s u p p o r t t h e p a r t i c i p a n t s ' i d e n t i t i e s . In a d d i t i o n , t h e p a r t i c i p a n t s had l o s t t h e c o n t i n u i n g p r e s e n c e a t home o f t h e p e r s o n who had s e r v e d as an 64 " a u d i e n c e " ( M c C a l l & Simmons, 1966) f o r t h e i r i d e n t i t y f o r many y e a r s . P r e o c c u p a t i o n w i t h t h e d i s a b l e d s p o u s e . A v i s i t i n g s p o u s e e x p r e s s e d t h e m e a n i n g o f t h i s c o n c e p t a s , "My w h o l e l i f e r e v o l v e s a r o u n d h e r . " The d a i l y l i v e s a n d t h o u g h t s o f m o s t p a r t i c i p a n t s were d o m i n a t e d by t h e c o n t i n u i n g p r e s e n c e o f t h e i r d i s a b l e d s p o u s e s i n t h e ECU. The e x t r e m e o f t h i s p r e o c c u p a t i o n was o b s e s s i o n . VS: Y e a h , I t h i n k a b o u t i t t o o much. I d o n ' t know how y o u g e t i t o u t o f y o u r m i n d . How c a n y o u j u s t s h u t i t [ o u t ] and t h i n k o f s o m e t h i n g e l s e ? P r e o c c u p a t i o n w i t h t h e d i s a b l e d s p o u s e t o o k two m a i n f o r m s i n t h e p r e s e n t s t u d y . F i r s t , p a r t i c i p a n t s e x p l a i n e d t h a t t h e i r d a i l y l i v e s were d i c t a t e d by t h e i r d i s a b l e d s p o u s e s ' p r e s e n c e i n t h e ECU. S e c o n d , t h e y r e v e a l e d t h a t t h e i r d i s a b l e d s p o u s e s were c o n s t a n t l y i n t h e i r t h o u g h t s . The f i r s t f o r m , d i c t a t e d l i v e s , was i n d i c a t e d by t h e i r v i s i t i n g p a t t e r n s , t h e d i s p l a c e m e n t o f o t h e r v a l u e d a c t i v i t i e s , and t h e a v o i d a n c e o f v a c a t i o n s . A l l o f t h e p a r t i c i p a n t s v i s i t e d t h e i r d i s a b l e d s p o u s e s a t l e a s t t w i c e a week and s i x v i s i t e d a l m o s t d a i l y . V i s i t i n g a l s o i n c l u d e d t a k i n g t h e d i s a b l e d s p o u s e on o u t i n g s . A l l t h e p a r t i c i p a n t s i n t e n d e d t o c o n t i n u e t h e i r v i s i t i n g p a t t e r n s . T h e y g a v e a number o f r e a s o n s f o r 65 d o i n g so — o b l i g a t i o n o r d u t y , a v o i d a n c e o f g u i l t , p i t y , r e c i p r o c i t y , a n d a f f e c t i o n . R: Why do y o u go e v e r y d a y ? VS: Why? B e c a u s e i t ' s my d u t y t o go e v e r y d a y , o r s i x d a y s o f e v e r y week. I t h i n k i t ' s s a d f o r t h e p e r s o n i n t h e h o s p i t a l t h a t has no v i s i t o r s . . . E v e n t h o u g h I d o n ' t s t a y t o o l o n g , she l o o k s f o r w a r d t o my v i s i t s . VS: I g u e s s t h i s f o r b e t t e r o r w o r s e a p p l i e s i n t i m e o f t r o u b l e . VS: I f I q u i t g o i n g o r i f I o n l y went o n c e o r t w i c e a week, i f I s t a r t e d t h a t , I d o n ' t know, I ' d f e e l so b l o o d y g u i l t y , I g u e s s . VS: I j u s t c a n ' t do t h a t [ s t o p v i s i t i n g ] , f o r a f t e r a l l s h e was a v e r y , v e r y g o o d w i f e t o me...and y o u c a n ' t j u s t l e a v e h e r a f t e r 30, 40 y e a r s o r s o . One woman d e s c r i b e d how 20 y e a r s b e f o r e h e r h u s b a n d had h e l p e d h e r t o r e c o v e r f r o m a s t r o k e and i m p l i e d t h a t she was i n some way r e p a y i n g him f o r h i s c a r e . A l t h o u g h a l l p a r t i c i p a n t s s a i d t h e y s t i l l c a r e d f o r t h e i r d i s a b l e d s p o u s e s , o n l y t h r e e p a r t i c i p a n t s c i t e d a f f e c t i o n as t h e m a j o r r e a s o n f o r v i s i t i n g . P a r t i c i p a n t s r e p o r t e d t h a t t h e r e were c e r t a i n b a d t i m e s a s s o c i a t e d w i t h v i s i t i n g . M o s t f o u n d l e a v i n g o r g e t t i n g r e a d y t o l e a v e t h e i r s p o u s e s a f t e r v i s i t i n g d i f f i c u l t . R: When y o u l e a v e t h e ECU, i s t h a t a d i f f i c u l t t i m e f o r y o u ? VS: W e l l , i t ' s n o t p l e a s a n t b u t I g u e s s y o u s o r t o f grow a c c u s t o m e d t o i t . When she f i r s t w ent i n i t ' s v e r y d i f f i c u l t . I w o u l d s a y t h e h a r d e s t p a r t i s when I have h e r home, t o g e t h e r r e a d y t o t a k e h e r b a c k up t h e r e , t h a t ' s t h e h a r d p a r t . Much h a r d e r t h a n s a y i n g g o o d b y e when s h e ' s i n t h e r e . 66 One woman f e l t a n x i o u s a n t i c i p a t i n g v i s i t i n g . VS: I g e t a l i t t l e b i t a p p r e h e n s i v e o r c o n c e r n e d i f I d o n ' t go ( v i s i t i n g ) and when i t comes n e a r l y t i m e t o go I g e t a b i t u p t i g h t . F o r a few (N=5), t h e i r s p o u s e s ' p r e s e n c e i n t h e ECU meant t h a t t h e y were u n a b l e t o p a r t i c i p a t e i n o t h e r a c t i v i t i e s t h a t g a v e them a s e n s e o f a c c o m p l i s h m e n t . VS: I d o n ' t e v e n h e l p o u t my d a u g h t e r - i n - l a w w i t h my g r a n d - d a u g h t e r a n y t h i n g l i k e I ' d l i k e t o . I ' d l o v e t o h a v e h e r more a n d , no, i n l o t s o f ways t h e way I w o u l d f u l f i l l m y s e l f t o t h i n k I was i m p o r t a n t o r t o f e e l t h a t t o d a y I had b e e n i m p o r t a n t a r e t h i n g s t h a t I r e f u s e now t o d o . One man s a i d , " I pay w i t h my l i f e " and h a v e g i v e n up " e v e r y t h i n g t h a t I g a i n e d t h e g r e a t e s t s a t i s f a c t i o n [ f r o m ] . " A l t h o u g h m o s t p a r t i c i p a n t s s t a t e d t h e y d i d n o t h a v e f i n a n c i a l w o r r i e s , two men had t o l i m i t t h e i r s p e n d i n g i n o r d e r t o pay t h e i r w i v e s ' ECU b i l l s . A n t i c i p a t i n g t h e i r own i l l n e s s o r d e a t h , t h e two men a l s o w i s h e d t o h a v e e n o u g h money s a v e d t o p r o v i d e f o r t h e i r w i v e s i n t h e f u t u r e . One man had t o move f r o m a l a r g e two b e d r o o m a p a r t m e n t t o a s m a l l s t u d i o b e c a u s e o f f i n a n c i a l 1 i mi t a t i o ns . M o s t (N=6) p a r t i c i p a n t s d e n i e d t h e m s e l v e s v a c a t i o n s b e c a u s e o f t h e t h e i r d i s a b l e d s p o u s e s ' p r e s e n c e i n t h e ECU. R: Have y o u t h o u g h t a b o u t t a k i n g any k i n d o f v a c a t i on? VS: No, I make my own l i f e a r o u n d t h e v i s i t s o u t t h e r e . . . I d o n ' t f e e l I s h o u l d be away f r o m h i m . 67 The r e a s o n s f o r a l l o w i n g t h e i r l i v e s t o be d i c t a t e d by t h e i r d i s a b l e d s p o u s e s p r e s e n c e were n o t t o t a l l y a l t r u i s t i c . F o r two men i n p a r t i c u l a r , t h e i r w i v e s were s o m e t h i n g t o o r g a n i z e t h e i r l i v e s a r o u n d . VS: I t t a k e s me a b o u t 7 h o u r s t o t a k e a b u s , go o u t t o [ t h e E C U ] , s p e n d t h r e e h o u r s t h e r e and t a k e a bus b a c k h e r e . I t ' s a b o u t my d a y . . . m o s t d a y s . So I d o n ' t h a v e t o w o r r y a b o u t what t o do. When a s k e d what w o u l d he do i f he d i d n o t v i s i t h i s w i f e e v e r y d a y , he was u n a b l e t o name any a l t e r n a t i v e a c t i v i t i e s . He and two o t h e r p a r t i c i p a n t s were e x t r e m e e x a m p l e s o f d i c a t a t e d l i v e s . A l t h o u g h t h e y w ere e x h a u s t e d and a n g u i s h e d by t h e i r p r e o c c u p a t i o n , t h e y were u n a b l e t o a l t e r t h e o r g a n i z a t i o n o f t h e i r d a i l y l i v e s . A w r i t e r on c a r e g i v i n g h as commented, " c a r i n g . . . i s e x p e r i e n c e d as a l a b o u r o f l o v e i n w h i c h t h e l a b o u r must c o n t i n u e e v e n where t h e l o v e f a l t e r s " ( G r a h a m , 1983, p. 1 6 ) . The v i s i t i n g s p o u s e s c a r e d b u t had no one t o c a r e f o r o r a b o u t them, t h a t i s , no one t o s a y , " D o n ' t c a r e so much." One p a r t i c i p a n t r e p o r t e d t h a t h i s c h i l d r e n had t r i e d t o c o n v i n c e him n o t t o v i s i t so f r e q u e n t l y and t o d e v e l o p new i n t e r e s t s , t o no a v a i l . F o r most o f t h e p a r t i c i p a n t s , t h e one p e r s o n t h e y m i g h t h a v e h e e d e d was t h e p e r s o n l e a s t a b l e t o c a r e f o r t h e m - - t h e d i s a b l e d s p o u s e . The s e c o n d f o r m o f p r e o c c u p a t i o n was h a v i n g t h e i r d i s a b l e d s p o u s e s c o n s t a n t l y i n t h e i r t h o u g h t s . T h e i r 68 d i s a b l e d s p o u s e s were a s o u r c e o f a n x i e t y f o r most o f t h e p a r t i c i p a n t s . Some o f t h e p a r t i c i p a n t s w o r r i e d a b o u t t h e c a r e t h a t t h e i r s p o u s e s r e c e i v e d i n t h e ECU. R: When y o u ' r e a t home, do y o u w o r r y a b o u t t h e c a r e s h e ' s r e c e i v i n g ? VS: Oh, I s u p p o s e . . . . I mean, i t ' s s o r t o f a c o n s t a n t t h i n g t h a t ' s s o r t o f w i t h y o u a l l t h e t i m e , y o u ' r e c o n c e r n e d a b o u t i t . T h i s was n o t t h e m a i n s o u r c e o f t h i s f o r m o f p r e o c c u p a t i o n . R a t h e r , m o s t o f t h e p a r t i c i p a n t s e x p r e s s e d f e e l i n g s o f s o r r o w a s s o c i a t e d w i t h s e e i n g t h e d e t e r i o r a t i o n o f t h e i r s p o u s e s . T h e s e e x p r e s s i o n s were c o n g r u e n t w i t h B e r e z i n ' s ( 1 9 7 0 ) c o n c e p t o f p a r t i a l g r i e f . The p a r t i c i p a n t s were c o n s t a n t l y aware and r e m i n d e d o f t h e l o s s e s s u f f e r e d by t h e m s e l v e s and t h e i r d i s a b l e d s p o u s e s . VS: W e l l , t h e w o r s t t h i n g was j u s t t o s e e him t h e way he was a f t e r b e i n g s u c h a b i g h e a l t h y man, y o u k n o w . . . . T h a t b o t h e r e d me, i t s t i l l d o e s . T h e r e were c e r t a i n t i m e s when t h e i r s o r r o w was more i n t e n s e , s u c h a s , f a m i l y g a t h e r i n g s and s p e c i a l o c c a s i o n s ( b i r t h d a y s , a n n i v e r s a r i e s , h o l i d a y s ) . VS: And I c a n s e e t h a t s h e ' s s l o w l y g o i n g down w h i c h i s t h e s a d d e s t p a r t . E s p e c i a l l y t i m e s l i k e t h i s [ C h r i s t m a s ] . You know, y o u go a r o u n d and s e e t h e r e s t o f t h e f a m i l y , y o u m i g h t be a b l e t o e n j o y y o u r s e l f b u t j u s t i n t h e b a c k o f y o u r m i n d i s a l w a y s t h e same t h i n g , t h a t she c a n n o t p a r t a k e i n t h i s . T h a t ' s t h e bad p a r t . A l t h o u g h m ost p a r t i c i p a n t s f o u n d t h e i r c o n s t a n t a w a r e n e s s o f t h e i r d i s a b l e d s p o u s e s p a i n f u l , one p a r t i c i p a n t drew g r e a t c o m f o r t f r o m i t . L i k e a widow 69 d e s c r i b e d i n P a r k e s ' s ( 1 9 7 2 a ) s t u d y o f g r i e f , t h i s p a r t i c i p a n t had a r e a s s u r i n g s e n s e o f h e r s p o u s e b e i n g w i t h o r p a r t o f h e r e v e n when t h e y were n o t t o g e t h e r . A n o t h e r p a r t i c i p a n t d e s c r i b e d h a v i n g symptoms s i m i l a r t o t h o s e o f h e r h u s b a n d . VS: I woke up one m o r n i n g and my r i g h t h and was a l l t i n g l y and k i n d o f n o t my arm and i m m e d i a t e l y I t h i n k , o h , s t r o k e . . . t h a t ' s a l l I c o u l d t h i n k o f was s t r o k e . . . a n d I f e e l l i k e a bowl o f j e l l y a t t i m e s b u t t h e r e was n o t h i n g w r o n g . T h e s e two e x t r e m e e x a m p l e s o f t h i s f o r m o f p r e o c c u p a t i o n i n d i c a t e d t h a t t h e v i s i t i n g s p o u s e s were i d e n t i f y i n g w i t h t h e i r d i s a b l e d s p o u s e s . P a r k e s ( 1 9 7 2 a ) f e l t t h a t t h e i d e n t i f i c a t i o n o f widows w i t h t h e i r h u s b a n d s r e p r e s e n t e d an a t t e m p t t o r e c o v e r t h e i r h u s b a n d s , t h a t i s , by n o t f u l l y r e c o g n i z i n g t h e l o s s t h e widows c o u l d r e t a i n t h e p a s t . I t was e v i d e n c e o f a c o n t i n u i n g a t t a c h m e n t t o t h e l o s t p e r s o n . As t i m e went o n , t h o u g h , m o s t widows were a b l e t o d e t a c h t h e m s e l v e s f r o m t h e l o s t p e r s o n as t h e y r e c o v e r e d f r o m t h e i r l o s s . G l i c k e t a l . ( 1 9 7 4 ) o b s e r v e d t h a t " t h i s d i d n o t mean t h e h u s b a n d was f o r g o t t e n , b u t r a t h e r t h a t he was no l o n g e r f e l t by widows s t i l l t o be a p r e s e n t i n f l u e n c e on t h e i r d e c i s i o n s a n d b e h a v i o u r " ( p . 1 5 5 ) . D i v o r c e d p e o p l e a l s o r e p o r t e d a c o n t i n u i n g a t t a c h m e n t t o t h e i r e x - s p o u s e s e v e n i f no a f f e c t i o n r e m a i n e d ( M a r s d e n , 1969; W e i s s , 1 9 7 9 ) . The v i s i t i n g s p o u s e s were u n a b l e t o d e t a c h t h e m s e l v e s 70 b e c a u s e t h e y were f a c e d w i t h t h e d i s a b l e d s p o u s e s ' c o n t i n u i n g e x i s t e n c e . I t c a n be s e e n f r o m t h e two m a j o r c o n c e p t s o f l o n e l i n e s s and p r e o c c u p a t i o n t h a t t h e p a r t i c i p a n t s were l i v i n g a p a r a d o x . T h e y s u f f e r e d b e c a u s e o f t h e i r s p o u s e s ' a b s e n c e f r o m home and b e c a u s e o f t h e i r s p o u s e s ' c o n t i n u i n g p r e s e n c e i n t h e ECU, As one s p o u s e s a i d , "You m i s s him t e r r i b l y a n d y o u s e e h i m g o i n g d o w n h i l l . " E a c h s i d e o f t h e p a r a d o x a f f e c t e d t h e o t h e r s i d e . One v i s i t i n g s p o u s e f e l l f u r t h e r and f u r t h e r i n t o s o c i a l i s o l a t i o n b e c a u s e he f e l t t h a t p e o p l e were d e p r e s s e d by h i s p r e o c c u p a t i o n w i t h h i s s i t u a t i o n . As W e i s s ( 1 9 7 3 ) n o t e d , t h e d e s p e r a t i o n f e l t by t h e l o n e l y f o r c o m p a n i o n s h i p c a n o s t r a c i z e them e v e n m o r e. W e i s s ( 1 9 7 3 ) p r o p o s e d t h a t l o n e l i n e s s i s t h e r e s p o n s e t o t h e a b s e n c e o f a r e l a t i o n s h i p p r o v i d i n g a t t a c h m e n t o r o f one p r o v i d i n g s o c i a l i n t e g r a t i o n . Y e t , t h e p a r t i c i p a n t s i n t h e p r e s e n t s t u d y d e s c r i b e d a c o n t i n u i n g a t t a c h m e n t t o t h e i r d i s a b l e d s p o u s e s a n d s e v e r a l o f them were s a t i s f i e d w i t h t h e i r s o c i a l r e l a t i o n s h i p s . T h e r e f o r e , t h e i r l o n e l i n e s s r e f l e c t e d t h e a b s e n c e o f some o t h e r a s p e c t o f t h e m a r i t a l r e l a t i o n s h i p . R u b i n ' s ( 1 9 7 4 ) d i s c u s s i o n o f t h e c o m p o n e n t s o f l o v e s h e d s some l i g h t on t h e v i s i t i n g s p o u s e s ' p a r a d o x i c a l s i t u a t i o n . He p r o p o s e d t h a t t h e r e a r e t h r e e c o m p o n e n t s o f 1 o v e - - a t t a c h m e n t , c a r i n g , and i n t i m a c y . He d e f i n e d 71 c a r i n g as t h e g i v i n g a s p e c t o f l o v e and f e l t t h a t "as a c o u p l e ' s r e l a t i o n s h i p becomes i n c r e a s i n g l y c l o s e , i t w i l l be a s s o c i a t e d w i t h b o t h i n c r e a s e d a t t a c h m e n t and i n c r e a s e d c a r i n g " ( p . 1 6 5 ) . The l o n g d u r a t i o n o f m o s t o f t h e p a r t i c i p a n t s ' m a r r i a g e s w o u l d s u g g e s t t h a t c a r i n g and a t t a c h m e n t were w e l l e s t a b l i s h e d c o m p o n e n t s . VS: [ V i s i t i n g ] d o e s mean a l o t t o him and t h i s i s why I f e e l i t i s i m p o r t a n t t o him t o h a v e my company as much as p o s s i b l e . A l i t t l e s t i m u l a t i o n . VS: She i s . . . s h e i s a p a r t o f me. N o t t h a t she was a w o n d e r f u l w i f e . B u t i t i s s o m e t h i n g , l e t ' s s e e , l i k e a k i d , y o u know, y o u g e t u s e d t o and became a p a r t o f . I n s t e a d o f r e f l e c t i n g t h e a b s e n c e o f a t t a c h m e n t , t h e v i s i t i n g s p o u s e s ' l o n e l i n e s s c a n be v i e w e d as t h e i r r e s p o n s e t o b e i n g d e p r i v e d o f an a s p e c t o f t h e m a r i t a l r e l a t i o n s h i p t h a t d e p e n d s on t h e c l o s e p r o x i m i t y o f t h e two p a r t n e r s - - i n t i m a c y . As one v i s i t i n g s p o u s e e x p l a i n e d , " I m i s s h i m , I m i s s him a t home." I n t i m a c y i s "a r e l a t i o n s h i p b e t w e e n l o v i n g p e o p l e whose l i v e s a r e d e e p l y e n t w i n e d " ( T r a u p m a n n & H a t f i e l d , 1979, p. 2 5 4 ) . An i n t i m a t e r e l a t i o n s h i p i s c h a r a c t e r i z e d "most c l e a r l y by c l o s e and c o n f i d e n t i a l c o m m u n i c a t i o n b e t w e e n two p e o p l e , t h r o u g h n o n v e r b a l as w e l l as v e r b a l c h a n n e l s ( R u b i n , 1974, p. 1 6 6 ) . An i n t i m a t e r e l a t i o n s h i p i s b e n e f i c i a l and may e v e n be c r i t i c a l t o m a i n t a i n i n g p h y s i c a l and m e n t a l h e a l t h ( T r a u p m a n n & H a t f i e l d , 1 9 7 9 ) . I t s i m p o r t a n c e t o t h e v i s i t i n g s p o u s e s was e v i d e n t i n t h e 72 v a r i e t y o f f o r m s t h e i r l o n e l i n e s s t o o k and t h e i n t e n s i t y o f t h e f e e l i n g s a s s o c i a t e d w i t h t h e a b s e n c e o f t h e i r s p o u s e s f r o m home. The p a r t i c i p a n t s ' c a r i n g f o r and a t t a c h m e n t t o t h e i r d i s a b l e d s p o u s e s meant t h a t t h e y were u n a b l e t o a d d r e s s t h e a b s e n c e o f i n t i m a c y . One man n o t e d t h a t " y o u ' r e by y o u r s e l f , i n o t h e r w o r d s , y o u c a n ' t g e t . . . i n t e r e s t e d i n a n y b o d y e l s e , b e c a u s e y o u ' r e s t i l l m a r r i e d , y o u know, and s t i l l y o u ' r e by y o u r s e l f . " One woman e x p l a i n e d , VS: I am r e a l l y b e g i n n i n g t o t h i n k t h a t a l a c k o f a s e x l i f e i s - - n o t t h a t I want somebody i n bed w i t h me, n o t t h a t i d e a , j u s t t o hop i n a n d hop o u t , b u t some k i n d o f a r e l a t i o n s h i p a n d y e t t h e more I t h i n k a b o u t i t , t h e l e s s i t w o u l d work o u t b e c a u s e I c a n n o t l e t m y s e l f go. R: So w i t h [ y o u r h u s b a n d ] . . . i n t h e ECU y o u w o u l d n ' t r e a l l y be a b l e t o t h i n k a b o u t f o r m i n g a r e l a t i o n s h i p w i t h a n o t h e r man? VS: No....As l o n g as [my h u s b a n d ] i s l i k e t h i s , I c a n ' t . No e n t e r t a i n i n g . F e e l i n g s o f h e l p l e s s n e s s and a n g e r a r o s e from k n o w i n g t h a t t h e r e was n o t h i n g t h a t t h e y c o u l d do t o a l t e r t h e i r own o r t h e i r s p o u s e s ' s i t u a t i o n s . VS: So y o u g e t k i n d o f c r u s h e d w i t h y o u r s e l f o r y o u g e t c r u s h e d w i t h l i f e , I d o n ' t know. I g e t a n g r y a t t i m e s . R: A t y o u r s e l f ? VS: A t m y s e l f , a t t h e w h o l e t h i n g . . . w h a t ' s t h e u s e , w h a t ' s t h e p u r p o s e o f i t . M o s t p a r t i c i p a n t s were w e l l aware o f t h e i r p a r a d o x i c a l s i t u a t i o n , a s i t u a t i o n made h a r d e r t o b e a r by n o t k n o w i n g when i t w o u l d e n d . One p a r t i c i p a n t v o i c e d what p e r h a p s o t h e r s were u n a b l e t o s a y . 73 VS: I w o u l d t h i n k t h a t i n some ways, I s h o u l d n ' t s a y t h i s — t h a t i t ' s w o r s e [ t h a n i f she had d i e d ] . I s h o u l d n ' t s a y t h a t b u t i n some ways i t i s b e c a u s e , y o u know, a d e a t h — a l l r i g h t y o u ' v e g o t g r i e f and y o u ' r e s t r i c k e n and t h e n t h e s u r v i v o r s o r t o f p i c k s up and g o e s on f r o m t h e r e and c a r r i e s o n . T h i s way, n e i t h e r o f y o u c a n go a n y w h e r e . T h a t ' s t h e way I l o o k a t i t . H i s s t a t e m e n t c a p t u r e s t h e e s s e n c e o f B e r e z i n ' s ( 1 9 7 0 ) c o n c e p t o f p a r t i a l g r i e f . T h i s p a r t i c i p a n t ' s g r i e f was u n r e s o l v a b l e f o r i t stemmed f r o m a l o s s t h a t he p e r c e i v e d as i n c o m p l e t e and o n g o i n g . In summary, a l l p a r t i c i p a n t s e x p e r i e n c e d l o n e l i n e s s and p r e o c c u p a t i o n w i t h t h e i r d i s a b l e d s p o u s e s . T h e s e two c o n c e p t s i n d i c a t e d t h a t t h e p a r t i c i p a n t s e x p e r i e n c e d b e h a v i o u r a l s y s t e m i m b a l a n c e . T h e i r l o n e l i n e s s t o o k s e v e n f o r m s and was a s s o c i a t e d w i t h f e e l i n g s o f d e p r e s s i o n , p u r p o s e l e s s n e s s , b o r e d o m , and low s e l f - e s t e e m . T h e i r p r e o c c u p a t i o n t o o k two f o r m s and was, f o r some, an o b s e s s i o n . M o s t p a r t i c i p a n t s f o u n d t h i s p r e o c c u p a t i o n p a i n f u l a l t h o u g h some g a i n e d p l e a s u r e and r e a s s u r a n c e f r o m i t . Two d i s t i n c t d i m e n s i o n s o f t h e i r e x p e r i e n c e f o r m e d a p a r a d o x i c a l s i t u a t i o n . T h e y s u f f e r e d f r o m t h e i r s p o u s e s ' a b s e n c e f r o m home b u t were f a c e d w i t h t h e i r c o n t i n u i n g p r e s e n c e i n t h e ECU. I t was s u g g e s t e d t h a t t h e p a r t i c i p a n t s ' l o n e l i n e s s a r o s e f r o m b e i n g d e p r i v e d o f i n t i m a c y and t h e i r p r e o c c u p a t i o n , f r o m t h e i r c o n t i n u i n g a t t a c h m e n t and c a r i n g f o r t h e i r d i s a b l e d s p o u s e s . 74 C l u s t e r s o f C o p i n g B e h a v i o u r s a n d I n f l u e n c i n g F a c t o r s The e x p e r i e n c e o f b e i n g a v i s i t i n g s p o u s e has two d i m e n s i o n s — n o t h a v i n g o n e ' s s p o u s e a t home b u t h a v i n g him o r h e r i n t h e ECU. The c o p i n g b e h a v i o u r s d i s c u s s e d h e r e were t h o s e u s e d by t h e p a r t i c i p a n t s i n r e s p o n s e t o t h e i m p a c t on t h e i r l i v e s o f t h e s e two d i m e n s i o n s . F a c t o r s ( f o r c e s and a b i l i t i e s ) i n f l u e n c i n g o r d e t e r m i n i n g c o p i n g b e h a v i o u r s a r e i n c o r p o r a t e d i n t o t h e d i s c u s s i o n b u t a r e s u m m a r i z e d s e p a r a t e l y . In t h i s s u b s e c t i o n , t h e f o u r c l u s t e r s o f c o p i n g b e h a v i o u r s and i n f l u e n c i n g f a c t o r s w e re a s s o c i a t e d w i t h : a) t h e d i s a b l e d s p o u s e ; b) p a i n f u l e m o t i o n s ; c ) t h e r o l e s f o r m e r l y p e r f o r m e d by t h e d i s a b l e d s p o u s e a t home; and d) s o c i a l p a r t i c i p a t i o n . The d i s a b l e d s p o u s e . The c o p i n g b e h a v i o u r s r e l a t e d t o t h e d i s a b l e d s p o u s e w e r e : t e n d i n g t o t h e n e e d s o f t h e d i s a b l e d s p o u s e ; s h a r i n g e x p e r i e n c e s w i t h t h e d i s a b l e d s p o u s e ; a n d , a c t i n g as an a d v o c a t e f o r t h e d i s a b l e d s p o u s e . T e n d i n g t o t h e n e e d s o f t h e i r d i s a b l e d s p o u s e s i n c l u d e d s u c h a c t i v i t i e s as r e a d i n g , g r o o m i n g , e x e r c i s i n g , t r a n s f e r r i n g , f e e d i n g and b r i n g i n g f o o d , and b r i n g i n g c a r d s and g i f t s on s p e c i a l o c c a s i o n s . P a r t i c i p a n t s f e l t t h a t t h e s e a c t i v i t i e s were i m p o r t a n t t o t h e i r d i s a b l e d s p o u s e s ' l i v e s i n t h e ECU. R: In y o u r v i s i t s t o t h e h o s p i t a l do y o u f e e l t h a t y o u a r e p l a y i n g an i m p o r t a n t r o l e ? VS: Oh, I t h i n k she l o o k s f o r w a r d t o i t a l l t h e 75 t i m e , y e s , y o u c a n a s k t h e n u r s e s . T h e y n o t i c e , t h e y t e l l me t h a t t h e y n o t i c e q u i t e a c h a n g e i f I'm a r o u n d . S h e ' s more a l e r t and she p e r k s up and s h e ' l l do t h i n g s t h a t s h e ' l l j u s t i g n o r e w i t h o u t [ m e ] . Some p a r t i c i p a n t s a l s o saw t h e s e a c t i v i t i e s as i m p o r t a n t t o t h e i r own l i v e s and p r o v i d e d them w i t h a s e n s e o f s a t i s f a c t i o n . VS: To go and l o o k a f t e r h i m . I s h a v e him and f i x h i s n a i l s and s e e t h a t h e ' s c l e a n and n i c e . Not t h a t [ h e ] n e e d s i t , t h e y do a l o v e l y j o b , b u t I l i k e t o do i t . P e r c e i v i n g t h a t t h e y were a p p r e c i a t e d by t h e i r d i s a b l e d s p o u s e s h e l p e d t h e s e c o p i n g b e h a v i o u r s . One man d e s c r i b e d h i s w i f e ' s r e a c t i o n when he v i s i t e d a f t e r b e i n g away f o r two w e e k s . VS: She had a b i g s m i l e on h e r f a c e f o r j u s t a few m i n u t e s . You know, t h a t h e l p s . She knows me and she r e c o g n i z e d me. She l i k e s t h e a t t e n t i o n s t h a t she g e t s . Some p a r t i c i p a n t s f e l t t h a t t h e s e a c t i v i t i e s were n e c e s s a r y b e c a u s e o f a p e r c e i v e d i n a d e q u a c y i n i n s t i t u t i o n a l c a r e . As L i n n and G u r e l ( 1 9 6 9 ) s u g g e s t e d , t h e q u a l i t y o f i n s t i t u t i o n a l f o o d was a f o c u s o f c o n c e r n s . VS: I t a k e h e r f o o d q u i t e o f t e n . T h a t ' s one o f t h e t h i n g s , t h e f o o d i n t h a t h o s p i t a l . I . . . t h i n k somebody f r o m t h e g o v e r n m e n t o r i n t h e h o s p i t a l owns a m a c a r o n i p l a n t o r s o m e t h i n g . A l t h o u g h m o s t p a r t i c i p a n t s g a i n e d s a t i s f a c t i o n f r o m t e n d i n g t o t h e i r d i s a b l e d s p o u s e s ' n e e d s , two p a r t i c i p a n t s f e l t a m b i v a l e n t a b o u t t h e s e c o p i n g b e h a v i o u r s . 76 VS: Of c o u r s e , h e r l i t e r a t u r e , h e r r e l i g i o u s l i t e r a t u r e t h a t she seems t o want t o r e a d , i t k i n d o f a n n o y s me b u t i t seems t o p a c i f y h e r . S e v e n o f t h e n i n e p a r t i c i p a n t s had f a m i l y members — d a u g h t e r s , s o n s , and d a u g h t e r s - i n-1 a w — w h o as s u m e d some o f t h e r e s p o n s i b i l i t y f o r t e n d i n g t o t h e n e e d s o f t h e i r d i s a b l e d s p o u s e s . One p a r t i c i p a n t ' s two d a u g h t e r s v i s i t e d t h e i r m o t h e r i n t h e ECU t h r e e t i m e s a week. One man's son t o o k h i s d i s a b l e d m o t h e r home e v e r y w e e k e n d . B u t , as L o c k e r ( 1 9 8 1 ) n o t e d , a d u l t c h i l d r e n s o m e t i m e s c a n n o t d e a l w i t h t h e i r own p a i n f u l e m o t i o n s . VS: He n e v e r s e e s h e r , t h e o l d e r son I d o n ' t know what i t i s w i t h h i m . He h a t e s g o i n g t o t h e h o s p i t a l . . . . M a y b e he j u s t c a n ' t , l o o k i n g a t t h i s , s e e i n g h i s m o t h e r i n t h o s e c o n d i t i o n s . The i m p o r t a n c e o f f a m i l y was d r a m a t i z e d by i t s a b s e n c e . One p a r t i c i p a n t , who had no c h i l d r e n and who seemed t o be m e e t i n g h i s n e e d s s u c c e s s f u l l y , f e l t t h a t v i s i t i n g s p o u s e s w i t h a d u l t c h i l d r e n w o u l d h a v e f e w e r p r o b l e m s . S h a r i n g e x p e r i e n c e s w i t h t h e d i s a b l e d s p o u s e i n c l u d e d s u c h a c t i v i t i e s a s g o i n g t o c o n c e r t s o r o t h e r f o r m s o f e n t e r t a i n m e n t t o g e t h e r , t a k i n g t h e d i s a b l e d s p o u s e s swimming, t a l k i n g and s h a r i n g news w i t h t h e d i s a b l e d s p o u s e , s i t t i n g s i l e n t l y b u t c o m p a n i o n a b l y w i t h e a c h o t h e r , p a r t i c i p a t i n g i n f a m i l y g a t h e r i n g s and o t h e r o u t i n g s t o g e t h e r , and g o i n g on w a l k s w i t h t h e d i s a b l e d s p o u s e . One woman d e s c r i b e d t h e i r C h r i s t m a s w i t h g r e a t d e l i g h t . 77 VS: We had a C h r i s t m a s p a r t y on t h e f l o o r a n d . . . t h e r e 1 s a C h r i s t m a s d i n n e r a t t h e ECU a t n o o n . . . . T h a t ' s what we d i d on C h r i s t m a s day and t h e n w e ' r e d o w n s t a i r s and open h i s p r e s e n t s and he g a v e p r e s e n t s t o e v e r y o n e t h a t he had c h o s e n . I made him c h o o s e h i s own p r e s e n t s f r o m t h e g i f t s h o p and t h a t was l o v e l y b e c a u s e i t t o o k us a b o u t t h r e e weeks o f o u r s p a r e d a y s . A n o t h e r man e x p l a i n e d , VS: We're n o t t h a t g r e a t c o n v e r s a t i o n a l i s t s . I t h i n k we e n j o y one a n o t h e r ' s company, j u s t s a y i n g n o t h i n g as a m a t t e r o f f a c t . Once I ' v e t o l d what t h e news i s o r who I was s p e a k i n g t o , I g o t n o t h i n g more t o s a y and s h e ' s g o t n o t h i n g more t o s a y a b o u t up t h e r e so we c a n s i t t h e r e and w a t c h t h e w o r l d go by and n o t s a y much. T h e s e k i n d s o f a c t i v i t i e s , t h o u g h l e s s f r e q u e n t l y m e n t i o n e d , seemed t o b r i n g t h e p a r t i c i p a n t s more p l e a s u r e t h a n t h e a c t i v i t i e s a s s o c i a t e d w i t h t e n d i n g t o t h e i r d i s a b l e d s p o u s e s ' n e e d s . T h e r e were t h r e e v i s i t i n g s p o u s e s , two o f whom were women, who g a i n e d an i n t r i n s i c p l e a s u r e f r o m i n t e r a c t i n g w i t h t h e i r d i s a b l e d s p o u s e s . T h e s e p a r t i c i p a n t s l o o k e d f o r w a r d t o t h e i r v i s i t s a nd s t a t e d t h a t i f t h e y c o u l d n o t v i s i t t h e y m i s s e d t h e i n t e r a c t i o n w i t h t h e i r d i s a b l e d s p o u s e s . Some p a r t i c i p a n t s were n o t a b l e t o d e s c r i b e any s h a r i n g a c t i v i t i e s . As t h e l i t e r a t u r e s u g g e s t s ( M oss & K u r l a n d , 1 9 7 9 ) , t h e i r d i s a b l e d s p o u s e s ' d i s t u r b i n g b e h a v i o u r s had a n e g a t i v e e f f e c t on t h e q u a l i t y o f t h e i r i n t e r a c t i o n s . One man s t a t e d , "When s o m e t h i n g p h y s i c a l l y b o t h e r s h e r she g e t s a l l f l u s t e r e d and t h a t ' s , when she g e t s f l u s t e r e d , I g e t f l u s t e r e d t o o . " T h e i r s p o u s e s ' 78 c o g n i t i v e a n d p h y s i c a l i m p a i r m e n t s a l s o i n f l u e n c e d t h e s h a r i n g o f e x p e r i e n c e s . One man d e s c r i b e d h i s i n t e r a c t i o n w i t h h i s w i f e . VS: She c a n ' t d i s c u s s t h i n g s . She s t a r t s t o t e l l me s o m e t h i n g and she f o r g e t s h a l f way t h r o u g h r e a l l y what s h e ' s t e l l i n g me. So y o u r e a l l y c a n ' t d i s c u s s . She g e t s a n n o y e d w i t h h e r s e l f b u t t h i s j u s t makes i t w o r s e f o r h e r so i t ' s a m i s e r a b l e t h i n g f o r b o t h p a r t i e s . A n o t h e r man d e s c r i b e d , w i t h g r e a t s a d n e s s , h i s i n a b i l i t y t o t a k e h i s w i f e o u t f o r an a n n i v e r s a r y d i n n e r . She was t o o d i f f i c u l t t o t r a n s f e r f r o m t h e c a r t o h e r w h e e l c h a i r . Two women, t h o u g h , d i d n o t a l l o w t h e i r s p o u s e s ' d i s a b i l i t i e s t o r e s t r i c t t h e i r s h a r i n g a c t i v i t i e s . VS: When I go o u t t o s e e h i m , I t e l l h i m , I j u s t r a m b l e on a b o u t a l l t h i s . R: Do y o u t e l l h im a l l t h e t h i n g s y o u ' v e b e e n d o i ng? VS: Y e s , y e s . A n o t h e r woman d e s c r i b e d how she c h a t t e d w i t h h e r h u s b a n d as she p u s h e d h i s w h e e l c h a i r e v e n t h o u g h she knew he d i d n o t u n d e r s t a n d m o st o f h e r c o n v e r s a t i o n . T h r e e p a r t i c i p a n t s had d i f f i c u l t y i n s h a r i n g e x p e r i e n c e s w i t h t h e i r d i s a b l e d s p o u s e s b e c a u s e o f u n r e a l i s t i c p e r c e p t i o n s o f t h o s e s p o u s e s . One p a r t i c i p a n t f e l t h i s w i f e c o u l d r e c o v e r i f she w a n t e d t o and a n o t h e r s a i d , " I c a n ' t h e l p t h i n k i n g o f h e r t h e way she u s e d t o b e . " M c C a l l and Simmons ( 1 9 6 6 ) w r o t e t h a t i n i n t e r a c t i n g w i t h a n o t h e r "we a r e r e a l l y a c t i n g t o w a r d o u r images....We i m p u t e t o t h e r e a l him a l l t h o s e c h a r a c t e r i s t i c s , g o a l s , and m o t i v e s t h a t c o n s t i t u t e o u r 79 i mage o f h i m , and t h e n we a c t t o w a r d him i n t e r m s o f t h o s e i m p u t e d f e a t u r e s " ( p . 1 2 1 ) . T h e s e p a r t i c i p a n t s had n o t r e v i s e d t h e i r i m a g e o f t h e i r d i s a b l e d s p o u s e s and t h u s w ere c o n s t a n t l y d i s c o m f i t t e d by t h e i r d i s a b l e d s p o u s e s ' f a i l u r e t o c o n f o r m t o t h e i r i m a g e . A c t i n g as an a d v o c a t e f o r t h e d i s a b l e d s p o u s e i n c l u d e d s u c h b e h a v i o u r s as p r o t e c t i n g him o r h e r f r o m t h e h o s t i l i t y o f o t h e r r e s i d e n t s , i n t e r v e n i n g on h i s o r h e r b e h a l f w i t h t h e s t a f f , and r e p o r t i n g o b s e r v a t i o n s t o t h e s t a f f . In D o b r o f ' s ( 1 9 7 6 ) s t u d y o f t h e f a m i l y members o f t h e i n s t i t u t i o n a l i z e d e l d e r l y , a c t i n g as an a d v o c a t e was a m a j o r c o p i n g b e h a v i o u r . In t h e p r e s e n t s t u d y , i t d i d n o t assume s u c h i m p o r t a n c e . D o b r o f ' s s a m p l e c o n s i s t e d p r i m a r i l y o f t h e a d u l t c h i l d r e n . T h e y may h a v e e x p e r i e n c e d more g u i l t and a m b i v a l e n c e a b o u t i n s t i t u t i o n a l i z i n g t h e i r e l d e r l y p a r e n t s and t h u s were more c r i t i c a l o f i n s t i t u t i o n a l c a r e t h a n t h e p a r t i c i p a n t s i n t h i s s t u d y . As was shown e a r l i e r , t h e p a r t i c i p a n t s f e l t l i t t l e o r no g u i l t and t h e i r c o n c e r n s a b o u t c a r e and t h e i r s u g g e s t i o n s t o i m p r o v e i t seemed e n t i r e l y j u s t i f i e d . One woman d e s c r i b e d h e r i n t e r a c t i o n s w i t h t h e s t a f f . VS: I a s k them s o m e t i m e s how h e ' s d o i n g . I s he d r i n k i n g e n o u g h . I ' v e b e e n w o r r i e d a b o u t him n o t d r i n k i n g e n o u g h . S o m e t i m e s t h e y come t o me and s a y [ y o u r h u s b a n d ] d i d n ' t e a t h i s l u n c h t o d a y . And t h e n I ' l l t a k e him d o w n s t a i r s and f i n d him s o m e t h i n g . 80 A n o t h e r p a r t i c i p a n t had i n t e r v e n e d i n h i s w i f e ' s m e d i c a t i o n r e g i m e . VS: So I a s k e d him [ t h e d o c t o r ] i f he c o u l d n ' t c u t t h e q u a n t i t y down and g i v e i t a l i t t l e b i t more r e g u l a r . And t h i s seemed t o h a v e h e l p e d a l i t t l e b i t , y o u know. V i e w i n g t h e s t a f f as c a r i n g and c o m p e t e n t i n f l u e n c e d t h e u s e o f t h i s c o p i n g b e h a v i o u r . F o u r p a r t i c i p a n t s saw t h e s t a f f p o s i t i v e l y and d e s c r i b e d v e r y few o c c a s i o n s when t h e y f e l t t h e s t a f f u n r e c e p t i v e o r i n c o m p e t e n t . F o u r were more a m b i v a l e n t and one was h o s t i l e t o w a r d t h e s t a f f . M o s t o f t h e p a r t i c i p a n t s m e n t i o n e d t h e y f o u n d t h e p r o f e s s i o n a l s t a f f more c a r i n g and c o m p e t e n t t h a n t h e n o n p r o f e s s i o n a l s t a f f . One p a r t i c i p a n t s t a t e d t h a t s t a f f t e n d e d t o " p i g e o n - h o l e " t h o s e r e s i d e n t s who c o u l d n o t s p e a k f o r t h e m s e l v e s and who had no r e l a t i v e s t o a c t as a d v o c a t e s . A l t h o u g h h i s w i f e was c o g n i t i v e l y u n i m p a i r e d and c o u l d c o m m u n i c a t e h e r n e e d s , he w i s h e d t o h a v e r e a s s u r a n c e t h a t s t a f f t r e a t e d a l l r e s i d e n t s as i n d i v i d u a l s . One man h a d made h i s p a r t i c i p a t i o n i n t h e s t u d y c o n d i t i o n a l on b e i n g a b l e t o a i r h i s c o m p l a i n t s . He d i d n o t b r i n g h i s c o n c e r n s t o t h e a t t e n t i o n o f t h e n u r s i n g c a r e m a n a g e r b e c a u s e he was a f r a i d o f n e g a t i v e r e p e r c u s s i o n s on h i s w i f e ' s c a r e . H i s and some o f t h e o t h e r p a r t i c i p a n t s ' a d v o c a t i n g a c t i v i t i e s had e n d e d i n a n g e r , o u t r a g e , and f r u s t r a t i o n . One man no l o n g e r b r o u g h t c o n c e r n s t o t h e a t t e n t i o n o f t h e s t a f f . 81 VS: What's t h e p o i n t i n s a y i n g i t . T h e y d o n ' t pay a t t e n t i o n . T h e y h e a r y o u , I g u e s s , b u t t h a t ' s i t . P a i n f u l e m o t i o n s . The c o p i n g b e h a v i o u r s a s s o c i a t e d w i t h p a i n f u l e m o t i o n s were e s c a p i n g and d e c r e a s i n g p a i n f u l e m o t i o n s . T h e s e c o p i n g b e h a v i o u r s were s e e n as p a r t i c u l a r l y e f f e c t i v e by p a r t i c i p a n t s and were n o t , i n t h e w o r d s o f F o l k m a n and L a z a r u s ( 1 9 8 0 ) , p r o b l e m - f o c u s e d , t h a t i s t h e y d i d n o t f u n c t i o n t o c h a n g e a s i t u a t i o n . E m o t i o n - f o c u s e d c o p i n g r e s p o n s e s a r e u s e d more i n s i t u a t i o n s t h a t t h e i n d i v i d u a l p e r c e i v e s as u n l i k e l y t o c h a n g e r e g a r d l e s s o f h i s o r h e r a c t i o n s ( F o l k m a n & L a z a r u s , 1 9 8 0 ) . G e o r g e ( 1 9 8 4 b ) s u g g e s t e d t h a t t h i s k i n d o f c o p i n g r e s p o n s e may be c r u c i a l l y i m p o r t a n t t o w e l l - b e i n g and t o t h e m a i n t e n a n c e o f t h e s e l f . In h e r s t u d y o f i n d i v i d u a l s c a r i n g f o r e l d e r l y r e l a t i v e s , i n s t r u m e n t a l ( p r o b l e m - f o c u s e d ) c o p i n g d e c r e a s e d and p a l l i a t i v e ( e m o t i o n - f o c u s e d ) c o p i n g i n c r e a s e d o v e r t i m e as c a r e g i v e r s r e a l i z e d t h a t l i t t l e c o u l d be done t o c h a n g e t h e i r s i t u a t i o n s . T h u s , i t i s n o t s u r p r i s i n g i n t h e p r e s e n t s t u d y t h a t c o p i n g b e h a v i o u r s r e d u c i n g t h e i m p a c t o f p a i n f u l e m o t i o n s were s e e n as p a r t i c u l a r l y e f f e c t i v e . C o p i n g b e h a v i o u r s i n t e n d e d t o e s c a p e p a i n f u l e m o t i o n s i n c l u d e d k e e p i n g b u s y and d r i n k i n g . K e e p i n g b u s y was v e r y e f f e c t i v e . VS: When y o u g e t b u s y t h e s e o t h e r t h o u g h t s go o u t o f y o u r m i n d t o p o i n t . You g o t t o be t h i n k i n g 82 o f what y o u ' r e d o i n g so i t d o e s h e l p I t h i n k and w h e r e a s i f y o u h a v e a l o t o f t i m e t o y o u r s e l f n a t u r a l l y y o u ' l l be t h i n k i n g a b o u t h e r . . . I t h i n k i t w o u l d g e t t o y o u . K e e p i n g b u s y i n c l u d e d s u c h a c t i v i t i e s as w o r k i n g , v o l u n t e e r i n g , g o i n g o u t , h o u s e k e e p i n g , c h o r e s , g a r d e n i n g , and h o b b i e s . P a r t i c i p a n t s s a i d t h a t i t h e l p e d them t o s t a y s a n e and k e p t them f r o m f e e l i n g d e p r e s s e d o r s o r r y f o r t h e m s e l v e s and d i s s a t i s f i e d w i t h l i f e . F o u r p a r t i c i p a n t s e x p l a i n e d t h e i r u s e o f t h i s c o p i n g b e h a v i o u r as p a r t o f t h e i r l i f e - l o n g r e p e r t o i r e o f c o p i n g b e h a v i o u r s . T h e y had a l w a y s k e p t b u s y . The i m p o r t a n c e o f k e e p i n g b u s y was e v i d e n t by i t s a b s e n c e i n one p a r t i c i p a n t ' s r e p e r t o i r e o f c o p i n g b e h a v i o u r s . He e x p l a i n e d , " I n e v e r had a h o b b y . I t h i n k i t ' s one o f my f a u l t s . I p r o b a b l y n e e d a hobby t o f a l l b a c k on....My h o b b i e s a r e w o r r y i n g a b o u t f r i e n d w i f e . . . . I t d o e s n ' t pay o f f . " H a v i n g an i n t e r e s t o t h e r t h a n t h e i r d i s a b l e d s p o u s e s d e t e r m i n e d t h e u s e o f t h i s c o p i n g b e h a v i o u r . K e e p i n g b u s y c o n t r i b u t e d t o r e c o v e r y among t h e b e r e a v e d i n t h e s t u d i e s by G l i c k e t a l . ( 1974) and L o p a t a ( 1973 ) . Some p a r t i c i p a n t s d r a n k a l c o h o l i n o r d e r t o e s c a p e p a i n f u l e m o t i o n s . As one s a i d , " i t k i n d o f t a k e s y o u r m i n d o f f , d i s t r a c t s y o u . I e n j o y i t , I j u s t s i p away a t i t . . . . I g e t by I g u e s s . " One p a r t i c i p a n t d r a n k t o l e s s e n h i s a n g e r a b o u t t h e c a r e h i s w i f e was r e c e i v i n g and a b o u t t h e c u t s t o t h e ECU's b u d g e t . 83 VS: I know t h e r e ' s n o t h i n g t h a t I c a n do a b o u t i t e x c e p t go o v e r t o V i c t o r i a and s t r a n g l e B e n n e t t and s t r a n g l e t h a t so c a l l e d m i n i s t e r o f h e a l t h . I ' d l i k e t o s e e him f a c e t o f a c e . D e c r e a s i n g p a i n f u l e m o t i o n s was a c h i e v e d i n a number o f w a y s - - a c c e p t i n g t h e s i t u a t i o n , t h e u s e o f humour, p o s i t i v e c o m p a r i s o n s , s e l f - a d m o n i s h m e n t s , c o n f i d i n g i n o t h e r s , n o t t h i n k i n g a b o u t t h e f u t u r e , and g e t t i n g t o know t h e s t a f f , o t h e r r e s i d e n t s a n d t h e i r f a m i l y members. M o s t p a r t i c i p a n t s t o v a r y i n g d e g r e e s s t r e s s e d t h e i m p o r t a n c e o f a c t i v e l y a c c e p t i n g t h e s i t u a t i o n . I t s i m p o r t a n c e was d e r i v e d f r o m t h e i r r e c o g n i t i o n o f t h e u n c e r t a i n t y o f t h e i r s i t u a t i o n s and t h e i r l a c k o f c o n t r o l o v e r t h e o u t c o m e . As one p a r t i c i p a n t s a i d , "What c a n y o u do? You c a n ' t do a n y t h i n g , " and a n o t h e r , " I t ' s n e v e r g o i n g t o c h a n g e . I t ' s j u s t an o n g o i n g t h i n g . " I t i s n o t s u r p r i s i n g , t h e n , t h a t a c c e p t i n g t h e s i t u a t i o n r e q u i r e d o n g o i n g e f f o r t f r o m t h e p a r t i c i p a n t s . As one man s a i d , " t h e r e a r e t i m e s t h a t I t h i n k , t h i s i s r i d i c u l o u s , i f I t a k e [ w i f e ] home, w e ' l l manage somehow. T h e n I t h i n k w e l l , l e t ' s be r e a l i s t i c , i t ' s n o t g o i n g t o work." A n o t h e r p a r t i c i p a n t r e c o g n i z e d c h a n g e s i n h e r s e l f d u r i n g t h e month a n d o n e - h a l f s e p a r a t i n g h e r f i r s t and s e c o n d i n t e r v i e w s . VS: I t has t a k e n me a l o n g t i m e t o f a c e up t o t h e r e a l f a c t t h a t he w i l l n e v e r be o u t o f t h e r e . R: Has i t ? VS: I knew w i t h i n m y s e l f t h a t he w o u l d n ' t be b u t y o u know t h e r e was a l w a y s t h a t l i t t l e hope t h a t t h e r e ' d be some i m p r o v e m e n t . 84 The i m p o r t a n c e o f a c c e p t i n g t h e s i t u a t i o n was e v i d e n t f r o m i t s a b s e n c e among t h e c o p i n g b e h a v i o u r s u s e d by some p a r t i c i p a n t s . VS: I c a n ' t u n d e r s t a n d i t . She had a f a i t h i n a God t h a t w o u l d n ' t l o o k a f t e r h e r , I d o n ' t know....I c a n ' t u n d e r s t a n d i t . The u s e o f t h i s c o p i n g b e h a v i o u r a l s o was i n f l u e n c e d by t h e p a r t i c i p a n t s ' a p p r o a c h t o p r o b l e m s and t h e i r p h i l o s o p h i e s o f l i f e . The p a r t i c i p a n t s who s t a t e d t h e y u s e d a p r o b l e m - s o l v i n g a p p r o a c h t o l i f e a d m i t t e d t o f r u s t r a t i o n w i t h t h e i r p r e s e n t s i t u a t i o n . VS: I t h i n k t h a t I ' v e g o t a p r o b l e m r i g h t now.... t h e w i f e . . . a n d i t ' s n o t g o i n g t o go away. The p a r t i c i p a n t s who had p e r s o n a l p h i l o s o p h i e s t h a t were more c o n g r u e n t w i t h a c c e p t a n c e e x p r e s s e d l e s s f r u s t r a t i o n . As M e c h a n i c ( 1 9 7 4 ) w r o t e , " p e o p l e who a c c e p t t h e i r e n v i r o n m e n t , and who do n o t s t r u g g l e a g a i n s t i t , e x p e r i e n c e g r e a t e r p h y s i c a l c o m f o r t and l e s s p s y c h o l o g i c a l s y m p t o m a t o l o g y " ( p . 9 5 ) . One woman d e s c r i b e d t h e p h i l o s o p h y t h a t had g u i d e d h e r t h r o u g h many y e a r s . VS: I f o u n d a l i t t l e t e x t . . . t o t h e e f f e c t t h a t y o u t h a n k God f o r p u t t i n g . . . [ y o u ] i n so l a r g e a room. And t h a t s t u c k b e c a u s e a room has w a l l s , and y o u ' r e i n s i d e t h e room and i t d e p e n d s on t h o s e w a l l s how much y o u c a n do b u t i f y o u c a n l o o k i n on w h a t ' s p o s s i b l e , n o t o u t on w h a t ' s d e n i e d y o u c a n make q u i t e a l i f e o u t o f v e r y l i t t l e . T h e r e a r e a l o t o f t h i n g s t h a t a r e p o s s i b l e and w i t h [my h u s b a n d ] t h i s i s w h a t ' s h a p p e n e d and what I'm l o o k i n g a t now i s t h e room I'm i n and w h a t ' s p o s s i b l e t o do w i t h i t . 85 The p a r t i c i p a n t s ' use o f humour t o d e c r e a s e p a i n f u l e m o t i o n s was e v i d e n t t h r o u g h o u t t h e i n t e r v i e w s . Two p a r t i c i p a n t s s p e c i f i c a l l y m e n t i o n e d humour as an i m p o r t a n t c o p i n g b e h a v i o u r . One man e x p l a i n e d , "You h a v e t o l o o k on t h e f u n n y s i d e o f i t o r y o u ' d go c r a z y . Humour i s t h e o n l y s a l v a t i o n f o r a l o t o f t h e s e t h i n g s . " Humour was n o t so e f f e c t i v e f o r a n o t h e r p a r t i c i p a n t b e c a u s e i t was humour t u r n e d a g a i n s t h i m s e l f , a k i n d o f s e l f - d e p r e c a t i n g b l a c k humour t h a t o n l y i n c r e a s e d h i s f e e l i n g s o f a l i e n a t i o n and g r i e f . P o s i t i v e l y c o m p a r i n g t h e m s e l v e s o r t h e i r s p o u s e s t o o t h e r s a l s o s e r v e d t o d e c r e a s e p a i n f u l e m o t i o n s . M e c h a n i c ( 1 9 7 7 ) v i e w e d c o m p a r i s o n w i t h o t h e r s as an i m p o r t a n t d i m e n s i o n o f i n d i v i d u a l s ' a d a p t i v e r e s p o n s e s t o s e r i o u s and c h r o n i c c o n d i t i o n s f o r i t a l l o w s them t o e v a l u a t e t h e i r s k i l l s a nd c o p i n g c a p a c i t i e s . P e a r l i n and S c h o o l e r ( 1 9 7 8 ) c i t e d t h e p h r a s e " m i s e r y l o v e s company" t o e x p l a i n t h e v a l u e o f p o s i t i v e c o m p a r i s o n . He a d d e d , " c o n d i t i o n s a p p e a r i n g t o an o u t s i d e o b s e r v e r as v e r y d i f f i c u l t may be e x p e r i e n c e d by p e o p l e as r e l a t i v e l y b e n i g n when t h e y j u d g e t h e c o n d i t i o n s t o be l e s s s e v e r e — o r no more s e v e r e — t h a n t h o s e f a c e d by t h e i r s i g n i f i c a n t o t h e r s " ( p . 6 ) . In t h e p r e s e n t s t u d y , p a r t i c i p a n t s seemed t o be r e a s s u r e d by p o s i t i v e c o m p a r i s o n s . One p a r t i c i p a n t f e l t t h a t g o i n g t o t h e ECU had " m e l l o w e d " him b e c a u s e o f s e e i n g p e o p l e l e s s 86 f o r t u n a t e . I n t e r e s t i n g l y , p a r t i c i p a n t s seemed t o g a i n a p e r v e r s e s e n s e o f s a t i s f a c t i o n f r o m o b s e r v i n g t h a t o t h e r r e s i d e n t s had no v i s i t o r s . A n o t h e r f o r m o f p o s i t i v e c o m p a r i s o n was f a v o u r a b l y c o m p a r i n g t h e i r s p o u s e s w i t h o t h e r r e s i d e n t s . One woman f e l t t h a t t h e s t a f f l i k e d h e r h u s b a n d and s a i d , "I'm as p r o u d as pu n c h o f h i m . J u s t l i k e h a v i n g a c h i l d . He d o e s n ' t l e t me down....I f e e l v e r y s o r r y f o r some o f them who come a n d . . . t h e i r p a t i e n t s a c t so o b j e c t i o n a b l y . " One p a r t i c i p a n t , h o w e v e r , r e v e a l e d t h e i n h e r e n t w e a k n e s s o f p o s i t i v e c o m p a r i s o n s . VS: T h e r e ' s l o t s o f p e o p l e t h a t a r e w o r s e o f f t h a n I am. I r e a l i z e t h a t . B u t when y o u h a v e t o d e a l w i t h i t , y o u k i n d o f f e e l c h e a t e d . So f a r , a t l e a s t , I ' v e g o t my h e a l t h so I s h o u l d be g r a t e f u l f o r t h a t . B u t w h e r e p o s i t i v e c o m p a r i s o n s were n o t u s e d , p a r t i c i p a n t s f e l t m i s e r a b l e . One man n e g a t i v e l y c o m p a r e d h i s s i t u a t i o n t o t h a t o f a b r o t h e r whose s p o u s e had d i e d and who had s u b s e q u e n t l y r e m a r r i e d . VS: So he g o t o v e r t h e h o r r o r s o f b e r e a v e m e n t i n a c o u p l e o f y e a r s I g u e s s . I t d o n ' t seem f a i r . T h e y ' r e h a p p y as a c o u p l e o f p i g s . T h e y ' v e s o l v e d t h e p r o b l e m by s t a r t i n g a new l i f e . In t h i s s i t u a t i o n t h e r e ' s no way y o u c o u l d do i t . S e l f - a d m o n i s h m e n t was a n o t h e r way o f d e c r e a s i n g p a i n f u l e m o t i o n s and t o o k t h e f o r m o f "pep t a l k s . " T h i s k i n d o f p o s i t i v e i n n e r d i a l o g u e was v i e w e d by M e i c h e n b a u m ( 1 9 7 7 ) as a means o f " s t r e s s i n n o c u l a t i o n . " One woman s a i d , " I p r e t t y w e l l k e e p a s s e s s i n g my f e e l i n g s d a i l y . I 8 7 a l m o s t l i t e r a l l y g i v e m y s e l f a k i c k on t h e b u t t t o g e t g o i n g and n o t f e e l s o r r y f o r m y s e l f . " A n o t h e r c o p i n g b e h a v i o u r a s s o c i a t e d w i t h d e c r e a s i n g p a i n f u l e m o t i o n s was c o n f i d i n g i n o t h e r s . One woman d e s c r i b e d how a f t e r l e a v i n g t h e ECU she t a l k e d w i t h t h e p a r k i n g l o t a t t e n d a n t and t h e n w o u l d come home and t e l e p h o n e g o o d f r i e n d s . She had a l s o f o r m e d a f r i e n d s h i p w i t h a l o t t e r y t i c k e t v e n d o r who knew a b o u t h e r h u s b a n d and she c o u l d " u n l o a d on h i m . " She was t h e o n l y p a r t i c i p a n t who d e s c r i b e d s u c h a n e t w o r k o f p e o p l e she c o u l d c o n f i d e i n . One man s a i d d u r i n g t h e i n t e r v i e w t h a t he had n e v e r s p o k e n a b o u t h i s t h o u g h t s and f e e l i n g s t o a n y o n e e l s e and e x p l a i n e d , " I know t h a t y o u won't t a l k a b o u t i t t o o t h e r p e o p l e . I t ' l l be a l l c o n f i d e n t i a l . . . b u t i t i s go o d t o t a l k a b o u t i t o n c e i n a w h i l e . " One p a r t i c i p a n t t r i e d t o e a s e h i s t e r r i b l e l o n e l i n e s s by t a l k i n g t o a p i c t u r e o f h i s s i s t e r - i n - l a w and h o p i n g t h a t i t w o u l d t a l k b a c k t o h i m . VS: T h a t ' s i t b e c a u s e I was u n d e r t h e i m p r e s s i o n i t was 1 o n e l y - - f e e l i n g t h a t maybe, maybe t o t a k e h e r o f f t h e w a l l , when [ s h e ] came i n t o t h e rooms and maybe she w i l l s t a r t and s a y a w o r d o r two. I t d i d n ' t work o u t . R: You must h a v e r e a l l y w a n t e d h e r t o t a l k ? VS: Oh, no d o u b t a b o u t i t . B u t I was f o o l i s h . He a d m i t t e d t h a t l o n e l i n e s s " a f f e c t s , y o u s e e , my t h i n k i n g t o q u i t e an e x t e n t . . . n o t b e i n g a b l e . . . t o h a v e a n y b o d y t o t a l k [ t o ] . " He f o u n d h i s d e l u s i o n a l t h i n k i n g d i s t r e s s i n g f o r , n o t o n l y d i d t h e p i c t u r e n o t t a l k b a c k 88 t o h i m , he was s u f f i c i e n t l y l u c i d t o f e e l t h a t t h i s c o p i n g b e h a v i o u r was u n s u i t a b l e . F o u r o f t h e p a r t i c i p a n t s s t i l l v i e w e d t h e i r s p o u s e s as t h e i r c o n f i d a n t e s and d i d n o t f e e l t h e n e e d t o f i n d o t h e r s . One man n o t e d t h a t h i s m a l e f r i e n d s were n o t c o n f i d a n t e s . R a t h e r , t h e y were f r i e n d s t o do t h i n g s w i t h . I t may w e l l be t h a t t h e s e v i s i t i n g s p o u s e s saw t h e r o l e o f c o n f i d a n t e as i n e x t r i c a b l y l i n k e d t o t h e i r d i s a b l e d s p o u s e s . B r a n d w e i n , P o s t o f f , and S t e i n b e r g ( 1 9 7 9 ) v i e w e d t h e v i s i t i n g s p o u s e s ' i n a b i l i t y t o t h i n k a b o u t t h e f u t u r e as a m a t t e r o f c o n c e r n . O t h e r w r i t e r s h a v e c o n c l u d e d t h a t a f u t u r e o r i e n t a t i o n among t h e a g e d "may be a s i g n o f p h y s i c a l and p s y c h o l o g i c a l a d j u s t m e n t " ( L o w e n t h a l , T h u r n h e r , C h i r i b o g a , & A s s o c i a t e s , 1 9 7 5 ) . In t h e p r e s e n t s t u d y , t h e p a r t i c i p a n t s who t r i e d n o t t o t h i n k a b o u t t h e f u t u r e saw t h i s as a s u i t a b l e c o p i n g b e h a v i o u r . As one p a r t i c i p a n t o b s e r v e d , " T h e r e ' s no s e n s e p l a n n i n g f o r what i s n ' t , what m i g h t n e v e r come. I t h i n k a b o u t t h e f u t u r e b u t i t ' s a t o t a l b l a n k . He c o u l d l i v e f o r y e a r s . " O t h e r s s a i d t h a t t h e y t r i e d t o t a k e one day a t t i m e . The p a r t i c i p a n t s who d i d t h i n k a b o u t t h e f u t u r e e x p r e s s e d f e e l i n g s o f h o p e l e s s n e s s and d e s p a i r , " t h e r e ' s no f u t u r e . I f t h e s i t u a t i o n g o e s on what c a n y o u d o ? " 89 The f i n a l c o p i n g b e h a v i o u r a s s o c i a t e d w i t h d e c r e a s i n g p a i n f u l e m o t i o n s was g e t t i n g t o know t h e s t a f f , o t h e r r e s i d e n t s and t h e i r f a m i l y members. VS: When I went t h e r e f i r s t i t [ b o t h e r e d me] a l i t t l e b i t s e e i n g t h e o t h e r p a t i e n t s b u t one o f t h e n u r s e s s a i d t o me,...she s a i d , y o u g e t t o know them and y o u ' l l t h i n k d i f f e r e n t l y a nd t h a t ' s t r u e as c a n be a n d . . . I d o n ' t know w h e t h e r t h e y . . . k n o w [me] o f c o u r s e , b u t I a l w a y s s p e a k t o them and y o u f e e l d i f f e r e n t l y a b o u t them and t h a t ' s t r u e as c a n b e . One woman d e s c r i b e d h e r d e l i g h t i n s e e i n g h e r h u s b a n d ' s f r i e n d s h i p w i t h a n o t h e r r e s i d e n t . A n o t h e r p a r t i c i p a n t i n d i c a t e d how g e t t i n g t o know o t h e r s h e l p e d h e r . VS: The i n t e r c h a n g e w i t h r e s i d e n t s a n d t h e i n t e r c h a n g e w i t h v i s i t o r s i s a t r e m e n d o u s h e l p . We s p e n d o u r l i f e t h e r e g o s s i p i n g [ l a u g h s ] . Oh, y e s , t h e p e o p l e a r e d e f i n i t e l y p a r t o f t h e e n t e r t a i n m e n t . I g u e s s w e ' r e p a r t o f i t [ 1 a u g h s ] . V i e w i n g t h e ECU as a b e n i g n e n v i r o n m e n t i n f l u e n c e d t h e u s e o f t h i s c o p i n g b e h a v i o u r . VS: The ECU i s r e a l l y a t e r r i f i c p l a c e . I t ' s n o t one o f t h o s e p l a c e s where e v e r y b o d y ' s i n bed i n t h e m o r n i n g a n d u n c h a n g e d a n d u n w a s h e d . T h e y ' r e w e l l c a r e d f o r . C o n v e r s e l y , t h e p a r t i c i p a n t s who v i e w e d t h e ECU p r i m a r i l y as a h o s t i l e e n v i r o n m e n t d i d n o t u s e t h i s c o p i n g b e h a v i o u r . One man, t h o u g h r e c o g n i z i n g t h e v a l u e o f i n s t i t u t i o n s , s a i d , " T h e s e i n s t i t u t i o n s , y o u ' r e t h a n k f u l f o r t hem, b u t t h e y ' r e an a w f u l p l a c e t o b e . " S e v e r a l o f t h e p a r t i c i p a n t s had a t t e n d e d a s u p p o r t g r o u p h e l d i n t h e ECU f o r t h e s p o u s e s o f r e s i d e n t s . M o s t o f them f o u n d t h e s u p p o r t g r o u p i n t e r e s t i n g and h e l p f u l . 90 K i l l i l e a ( 1982 ) l i s t e d t h e b e n e f i t s o f mutu,al h e l p g r o u p s as p r o v i d i n g i d e n t i f i c a t i o n and r e c i p r o c i t y , a c c e s s t o a body o f s p e c i a l i z e d i n f o r m a t i o n , an o p p o r t u n i t y t o s h a r e c o p i n g t e c h n i q u e s b a s e d on r e a l i s t i c e x p e c t a t i o n s f o r o p t i m a l f u n c t i o n i n g , an i n c r e a s e d s e n s e o f w o r t h by f o c u s i n g on how l i k e t h e members a r e t o o t h e r s i n t h e same s i t u a t i o n , r e i n f o r c e m e n t f o r c h a n g e and m a i n t e n a n c e o f e f f o r t . . . a n d an a r e n a f o r a d v o c a c y and s o c i a l c h a n g e empowerment ( p . 1 8 5 ) . S i m i l a r l y , one p a r t i c i p a n t n o t e d t h r e e p o s i t i v e f e a t u r e s o f t h e s u p p o r t g r o u p . T h e y w e r e : k n o w i n g what t o do w i t h h e r s e l f when she r e t u r n e d t o an empty h o u s e ; k n o w i n g how o t h e r p e o p l e f e l t ; and k n o w i n g a b o u t t h e e c o n o m i c r e s t r a i n t s on c a r e . A n o t h e r p a r t i c i p a n t a d d e d t h a t t h e p e o p l e i n t h e g r o u p were a b l e t o make u s e f u l s u g g e s t i o n s t o t h e s o c i a l w o r k e r r e g a r d i n g new p r o g r a m s . One p a r t i c i p a n t made an i n t e r e s t i n g comment. She s a i d t h a t t h e g r o u p was v e r y n i c e b u t " I d i d n ' t seem t o h a v e t h e p r o b l e m s t h a t t h e y [ t h e g r o u p l e a d e r s ] were, l o o k i n g f o r . " Her comment i l l u s t r a t e s t h a t s u p p o r t g r o u p s may n o t be a p p r o p r i a t e f o r a l l v i s i t i n g s p o u s e s . I t i s s i g n i f i c a n t , a l t h o u g h n o t s u r p r i s i n g , t h a t i t was p r i m a r i l y t h e women i n t h e s a m p l e who s t r e s s e d t h e i m p o r t a n c e o f g e t t i n g t o know t h e s t a f f , o t h e r r e s i d e n t s and t h e i r f a m i l y members. Women a r e l i k e l y t o h a v e more e x p e r i e n c e and a b i l i t y i n e s t a b l i s h i n g s o c i a l r e l a t i o n s h i p s t h a n men ( K o h e n , 1983) and i n t e r a c t i o n w i t h o t h e r s may be more i m p o r t a n t t o m e d i a t i n g s t r e s s f o r women t h a n f o r men ( E l w e l l & M a i t b i e - C r a n n e l 1 , 1 9 8 1 ) . 91 M o s t o f t h e men i n t h e s a m p l e v i e w e d t h e r e s i d e n t s as non-human o r n o n - a w a r e b e i n g s . One man s t a t e d , "They [ t h e o t h e r r e s i d e n t s ] d o n ' t t a k e an i n t e r e s t , t h e y d o n ' t c a r e w h a t ' s g o i n g o n . T h e y ' r e n o t i n t e r e s t e d i n t h e i r own w e l l - b e i n g o r i n f o o d , t h e y ' r e j u s t t h e r e . " A n o t h e r w o n d e r e d , " I d o n ' t know how she s t a y s t h e r e w i t h o u t f r o t h i n g a t t h e m o u t h . I t ' s t e r r o r i z i n g t o t h i n k t h a t day a f t e r day t o know t h a t y o u ' d n e v e r be a human b e i n g a g a i n . " C o n t r i b u t i n g t o t h e i r l a c k o f d e s i r e t o g e t t o know t h e r e s i d e n t s was t h e i n t e g r a t i o n o f c o g n i t i v e l y i m p a i r e d , d i s t u r b i n g r e s i d e n t s w i t h t h o s e who d i d n o t e v i n c e d i s t u r b i n g b e h a v i o u r s . VS: I mean, t h e r e ' s a l o t o f p e o p l e o u t t h e r e t h a t I d o n ' t t h i n k t h e y s h o u l d h a v e t h e r e . T h e s e o t h e r p e o p l e t h a t a r e j u s t c a u s i n g u p s e t s and some o f t h e w e i r d n o i s e s , I mean, a f t e r a w h i l e , y o u g e t a l i t t l e p e c u l i a r y o u r s e l f l i v i n g i n t h i s . I t ' s b ad e n o u g h b e i n g i n an i n s t i t u t i o n t o b e g i n w i t h . . . a n d t h e n y o u g e t a l l t h e s e o t h e r t h i n g s g o i n g w i t h i t . I r e a l l y t h i n k i t ' s t o o bad t o h a v e t o do i t t h i s way. I r e a l l y d o n ' t know why t h e y c a n ' t s e g r e g a t e them, I r e a l l y d o n ' t . The r o l e s f o r m e r l y p e r f o r m e d by t h e d i s a b l e d s p o u s e . T h i s c l u s t e r r e f l e c t e d t h e v i s i t i n g s p o u s e s ' a b i l i t y t o c o m p e n s a t e f o r t h e i n s t r u m e n t a l f u n c t i o n s f o r m e r l y f i l l e d by t h e i r d i s a b l e d s p o u s e s . M o s t o f t h e s a m p l e u s e d c o p i n g b e h a v i o u r s a s s o c i a t e d w i t h c o m p e n s a t i n g s u c h as l e a r n i n g new s k i l l s and a s s u m i n g t h e p r i m a r y r e s p o n s i b i l i t y f o r t a s k s . C o n t r a r y t o p o p u l a r o p i n i o n , m o s t o f t h e men i n t h e s a m p l e were a b l e t o l e a r n c o o k i n g 92 and h o u s e k e e p i n g s k i l l s w i t h o u t much d i f f i c u l t y . One man s t a t e d , " I d i d n ' t u s e t o c o o k b u t I l e a r n e d t o . I t was a c a s e o f h a v i n g t o - - y o u e i t h e r c o o k o r y o u s t a r v e . You g o t no c h o i c e . So y o u s t a r t c o o k i n g . . . . I t t u r n e d o u t g r e a t , no p r o b l e m a t a l l . " A n o t h e r man had e m p l o y e d h o u s e k e e p e r s b u t t h e n d e c i d e d t o do t h e c l e a n i n g h i m s e l f . VS: I f o u n d o u t how t h e s e g i r l s d i d i t . B oy, b r o t h e r , I c a n do t h a t . I c a n do i t q u i c k e r . R: And now y o u do i t a l l y o u r s e l f ? VS: Y e a h . . . W e l l I t d o e s n ' t t a k e v e r y l o n g b u t t h e n I d o n ' t do i t as o f t e n , p r o b a b l y . Once a week i s e n o u g h t o vacuum t h e h o u s e . T h e r e ' s no p r o b l e m t h e r e . P a s t c a r e g i v i n g e x p e r i e n c e p o s i t i v e l y i n f l u e n c e d t h e a b i l i t y t o c o m p e n s a t e among t h e men i n t h e s a m p l e . T h e y d e s c r i b e d a k i n d o f a p p r e n t i c e s h i p i n h o u s e w i f e l y t a s k s d u r i n g t h e c a r e g i v i n g p e r i o d . VS: W e l l , a f t e r t h e s t r o k e and she was u n a b l e t o do t h e c o o k i n g o r t h e s h o p p i n g , s h e w o u l d t e l l me p r e t t y w e l l what t o b u y . . . a n d i f i t was g r o u n d meat t o make a meat l o a f , s h e ' d t e l l me what t o p u t i n t h e meat l o a f , how t o make i t , what pan t o p u t i t i n , and what t e m p e r a t u r e t o p u t i t i n t h e o v e n a t , and t h e r e s t o f i t . S o, she was r e a l l y d o i n g t h e c o o k i n g by r e m o t e c o n t r o l . O t h e r c o p i n g b e h a v i o u r s i n c l u d e d t a k i n g on g a r d e n i n g r e s p o n s i b i l i t i e s , k e e p i n g t r a c k o f c o r r e s p o n d e n c e , r e m e m b e r i n g s p e c i a l o c c a s i o n s , a n d , i n one p a r t i c i p a n t ' s c a s e , t a l k i n g m o r e . T h r e e o f t h e men were e x p e r i e n c i n g some d i f f i c u l t y i n c o m p e n s a t i n g f o r t h e i r s p o u s e s ' a b s e n c e . Two men had b e e n d o i n g m o s t o f t h e i r c o o k i n g and c l e a n i n g b u t were e x p e r i e n c i n g i n c r e a s i n g d i f f i c u l t y b e c a u s e o f d e t e r i o r a t i n g h e a l t h . 93 VS: I t ' s n e a r l y f o u r y e a r s , y o u know. I t has become r e a l l y t o u g h g o i n g . I'm n o t g e t t i n g any y o u n g e r . . . . One o f t h e s e d a y s I w i l l h a v e t o h a v e some p e o p l e t o do t h i n g s f o r me, I g u e s s . One man had n e v e r t r i e d t o l e a r n new s k i l l s . He managed by e a t i n g m o s t o f h i s m e a l s i n r e s t a u r a n t s . S o c i a l p a r t i c i p a t i o n . P a r t i c i p a t i n g i n s o c i a l a c t i v i t i e s and i n t e r a c t i o n s w i t h f a m i l y and f r i e n d s were v i e w e d as i m p o r t a n t c o p i n g b e h a v i o u r s by a l l o f t h e p a r t i c i p a n t s . Two women f e l t t h a t i t was i m p o r t a n t t o k e e p t h e m s e l v e s i n t e r e s t i n g f o r t h e i r h u s b a n d s . T h e y and o t h e r s a l s o saw s o c i a l p a r t i c i p a t i o n as a c o p i n g b e h a v i o u r r e l a t e d t o r e d u c i n g t h e i m p a c t o f l o n e l i n e s s and p a i n f u l e m o t i o n s . E v e n s o , t h e r e were d i f f e r e n c e s among t h e p a r t i c i p a n t s i n t h e i r u s e o f t h i s c o p i n g b e h a v i o u r . T h r e e p a r t i c i p a n t s i n c r e a s e d t h e i r s o c i a l p a r t i c i p a t i o n as a r e s u l t o f t h e i r s p o u s e s ' i n s t i t u t i o n a l i z a t i o n . T h e y a t t e n d e d s e n i o r c i t i z e n s ' g r o u p s , went b o w l i n g , j o i n e d c o m m u n i t y i n t e r e s t g r o u p s , t o o k p a r t i n t h e ECU's a c t i v i t i e s , and v i s i t e d o r went o u t w i t h f r i e n d s and f a m i l y . One p a r t i c i p a n t t a l k e d more w i t h p e o p l e . VS: I a l s o t a l k t o p e o p l e t h a t I maybe w o u l d n ' t h a v e made c o n v e r s t i o n w i t h p r e v i o u s l y , when I'm s h o p p i n g . Somebody a h e a d o f me o r b e h i n d me i n t h e c h e c k o u t c o u n t e r , I ' l l , d e p e n d i n g on t h e t y p e , I ' l l e i t h e r j o k e w i t h them o r s o m e t h i n g more down t o e a r t h . And t h e g i r l s , t h e c l e r k s , t h e c a s h i e r s . 94 Two o f t h e s e v i s i t i n g s p o u s e s i n c r e a s e d t h e i r p a r t i c i p a t i o n i n r e s p o n s e t o t h e w i t h d r a w a l o f t h e i r m a j o r s o u r c e o f human c o n t a c t - - t h e i r s p o u s e s . VS: I f my w i f e was home t h e n I w o u l d h a v e had t o c u t down on t h e s o c i a l c o n t a c t s on t h e o u t s i d e b e c a u s e t h e r e ' d be r e a l l y no n e e d f o r them a n d I w o u l d n ' t w a nt them b e c a u s e I ' d r a t h e r be h e r e . T r o l l ( 1 9 8 2 ) a s s e r t e d t h a t m a r r i e d p e o p l e a r e more l i k e l y t o h a v e n o n - f a m i l y f r i e n d s t h a n a r e s i n g l e , w i d o w e d , o r d i v o r c e d p e o p l e . B u t , t h i s p a r t i c i p a n t ' s comment i s more c o n g r u e n t w i t h K o h e n ' s ( 1 9 8 3 ) f i n d i n g t h a t t h e w i dowed had more s o c i a l c o n t a c t s t h a n m a r r i e d p e o p l e . A n o t h e r t h r e e p a r t i c i p a n t s , t h o u g h e n g a g i n g i n t h e same k i n d o f a c t i v i t i e s as t h e a b o v e g r o u p , c h o s e t o m a i n t a i n t h e i r l e v e l o f s o c i a l p a r t i c i p a t i o n a t what i t was b e f o r e t h e i n s t i t u t i o n a l i z a t i o n o f t h e i r s p o u s e s . T h i s was e i t h e r b e c a u s e t h e y had n e v e r d e c r e a s e d t h e i r l e v e l s o f p a r t i c i p a t i o n d u r i n g t h e c a r e g i v i n g p e r i o d o r b e c a u s e t h e y d i d n o t h a v e t h e e n e r g y o r d e s i r e t o h a v e more s o c i a l c o n t a c t . R: Do y o u f e e l y o u a r e g e t t i n g t h e r i g h t amount o f s o c i a l c o n t a c t ? VS: Y e s , b e c a u s e i f I w a n t e d any m ore, I c o u l d q u i t e e a s i l y go o u t and g e t m o r e . . . . I t h i n k I d o n ' t t r y h a r d e n o u g h . I d o n ' t want t o g e t i n v o l v e d w i t h t h a t any m o r e . T h r e e men w i t h d r e w f r o m s o c i a l p a r t i c i p a t i o n . One man had n o t i c e d h i s w i t h d r a w a l o v e r a number o f y e a r s . R: What k i n d o f t h i n g s h a v e y o u done t o g e t some o f t h a t c o n t a c t w i t h f r i e n d s ? VS: R e a l l y , I g u e s s n o t v e r y much, I s u p p o s e 95 . . . . b e c a u s e t h e r e ' s r e a l l y n o t much f u n g o i n g somewhere by y o u r s e l f and so t h i s i s b a s i c a l l y y o u k i n d o f go i n t o a s h e l l and o n c e y o u do i t , i t ' s a w f u l h a r d t o g e t o u t o f i t , i t ' s a w f u l e a s y t o d r o p i n t o i t , s o r t o f g e t t o be a s t i c k i n t h e mud. T h e i r w i t h d r a w a l was s o u r c e o f c o n c e r n t o them b u t t h e y f e l t h e l p l e s s t o r e v e r s e i t . One man d i d n o t h a v e e n o u g h e n e r g y t o m a i n t a i n h i s s o c i a l p a r t i c i p a t i o n b u t as t h e a b o v e q u o t e i n d i c a t e s , a n e g a t i v e a t t i t u d e t o b e i n g a l o n e a l s o had an i n f l u e n c e . An a v e r s i o n t o b e i n g a l o n e may be e s p e c i a l l y p r o n o u n c e d i n t h e e l d e r l y ( C h i r i b o g a , 1982a) and o v e r c o m i n g i t i s t h e f i r s t s t e p i n a l l e v i a t i n g l o n e l i n e s s ( Y o u n g , 1 9 8 2 ) . B e i n g s i n g l e i n a s o c i e t y t h a t s t r e s s e s c o u p l e - c o m p a n i a t e a c t i v i t i e s c a n a l s o i n c r e a s e o n e ' s s e n s e o f a l i e n a t i o n ( L o p a t a , 1 9 6 9 ) . P a r t i c i p a n t s who " e n j o y e d t h e i r own company," as one woman s a i d , and who were c o m f o r t a b l e i n d o i n g t h i n g s a l o n e t e n d e d t o p a r t i c i p a t e i n s o c i a l l i f e m o r e . F a m i l y and f r i e n d s were a l s o i m p o r t a n t t o t h e v i s i t i n g s p o u s e s ' s o c i a l p a r t i c i p a t i o n . One p a r t i c i p a n t n o t e d t h a t h i s f a m i l y a s k e d him t o d i n n e r more s i n c e h i s w i f e ' s i n s t i t u t i o n a l i z a t i o n and o t h e r s d e s c r i b e d t h e i r i n t e r a c t i o n s w i t h f r i e n d s . One p a r t i c i p a n t had no f a m i l y and no c a r i n g f r i e n d s . The p a i n o f h i s l o n e l i n e s s was i n t e n s e . VS: F i r s t o f a l l t h e r e i s n o b o d y l e f t [ m e a n i n g none o f h i s f r i e n d s a r e a l i v e ] . R: No one i s l e f t . VS: O n l y two p e o p l e and t h e y c a n ' t e v e n . . . t e l e p h o n e me. 96 In summary, c o p i n g b e h a v i o u r s and i n f l u e n c i n g f a c t o r s c l u s t e r e d a r o u n d f o u r a s p e c t s o f t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e - - t h e d i s a b l e d s p o u s e , p a i n f u l e m o t i o n s , t h e r o l e s f o r m e r l y p e r f o r m e d by t h e d i s a b l e d s p o u s e , and s o c i a l p a r t i c i p a t i o n . The f i r s t c a t e g o r y p e r t a i n e d t o t h e d i s a b l e d s p o u s e ' s c o n t i n u i n g p r e s e n c e i n t h e ECU and t h e l a s t two c a t e g o r i e s p e r t a i n e d more t o t h e d i s a b l e d s p o u s e ' s a b s e n c e f r o m home. The s e c o n d c a t e g o r y , p a i n f u l e m o t i o n s , was a s s o c i a t e d w i t h b o t h a s p e c t s o f t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e . S u i t a b l e c o p i n g b e h a v i o u r s u s e d by t h e p a r t i c i p a n t s r e d u c e d t h e n e g a t i v e i m p a c t o f n o t h a v i n g t h e i r s p o u s e s a t home and o f h a v i n g t h e i r s p o u s e s i n t h e ECU. T h e s e i n c l u d e d : t e n d i n g t o t h e n e e d s o f , s h a r i n g e x p e r i e n c e s w i t h , and a c t i n g as an a d v o c a t e f o r t h e d i s a b l e d s p o u s e ; k e e p i n g b u s y ; a c c e p t i n g t h e s i t u a t i o n ; u s i n g humour i n a p o s i t i v e way; n o t t h i n k i n g a b o u t t h e f u t u r e ; m a k i n g p o s i t i v e c o m p a r i s o n s ; g e t t i n g t o know o t h e r r e s i d e n t s a n d t h e i r f a m i l y members; s e l f - a d m o n i s h m e n t s ; c o m p e n s a t i n g f o r t h e i n s t r u m e n t a l f u n c t i o n s o n c e f i l l e d by t h e d i s a b l e d s p o u s e ; a n d , i n c r e a s i n g o r m a i n t a i n i n g s o c i a l p a r t i c i p a t i o n . U n s u i t a b l e c o p i n g b e h a v i o u r s d i d n o t r e d u c e t h e n e g a t i v e i m p a c t , a n d , i n d e e d , o f t e n h e i g h t e n e d i t . D e l u s i o n a l t h i n k i n g and r e s p o n d i n g t o an i n a c c u r a t e image o f t h e d i s a b l e d s p o u s e were u n s u i t a b l e c o p i n g 97 b e h a v i o u r s . O t h e r s w e r e , i n g e n e r a l , t h e o p p o s i t e s o f s u i t a b l e c o p i n g b e h a v i o u r s . The f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g t h e u s e o f t h e p a r t i c i p a n t s ' c o p i n g b e h a v i o u r s w e r e : p r e v i o u s c a r e g i v i n g e x p e r i e n c e f o r m a l e p a r t i c i p a n t s ; s o c i a l s u p p o r t ; h e a l t h ; t h e q u a l i t y o f t h e i n t e r a c t i o n w i t h and t h e p h y s i c a l and m e n t a l s t a t e o f t h e d i s a b l e d s p o u s e ; t h e i n s t i t u t i o n a l e n v i r o n m e n t i n c l u d i n g s t a f f , r e s i d e n t s , and o t h e r v i s i t o r s ; t h e i r c h a r a c t e r i s t i c a p p r o a c h t o p r o b l e m s and p h i l o s o p h y o f l i f e ; a n d , t h e u n c e r t a i n , u n c o n t r o l l a b l e , and o n g o i n g n a t u r e o f t h e i r e x p e r i e n c e . C o r e C o n c e p t s T h r e e c o r e c o n c e p t s e m e r g e d f r o m t h e d a t a and had t h e g r e a t e s t e x p l a n a t o r y p o w e r . T h e s e w e r e : p e r c e i v i n g m u t u a l i t y i n t h e i n t e r a c t i o n w i t h t h e d i s a b l e d s p o u s e ; h u m a n i z i n g t h e i n s t i t u t i o n ; and i n t e g r a t i n g b e i n g a v i s i t i n g s p o u s e i n t o t h e c o n t i n u i t y o f l i f e . The f i r s t two c o n c e p t s were n e c e s s a r y t o , b u t s u b s u m e d , by t h e t h i r d c o r e c o n c e p t . T h i s l a s t c o n c e p t t o u c h e d a l l a s p e c t s o f t h e v i s i t i n g s p o u s e s ' l i v e s . P e r c e i v i n g M u t u a l i t y i n t h e I n t e r a c t i o n H i r s c h f e l d ( 1 9 8 3 ) s t u d i e d t h e f a c t o r s i n f u e n c i n g t h e s a t i s f a c t i o n o f i n d i v i d u a l s c a r i n g f o r e l d e r l y r e l a t i v e s 98 a t home. She f o u n d t h a t t h e c o r e v a r i a b l e was m u t u a l i t y i n t h e i n t e r a c t i o n . T h i s m u t u a l i t y "grew o u t o f t h e c a r e g i v e r ' s a b i l i t y t o f i n d g r a t i f i c a t i o n i n t h e r e l a t i o n s h i p . . . a n d m e a n i n g f r o m t h e c a r e g i v i n g s i t u a t i o n " ( p . 2 6 ) . I t a l s o i n c l u d e d t h e " c a r e g i v e r ' s a b i l i t y t o p e r c e i v e t h e i m p a i r e d p e r s o n as r e c i p r o c a t i n g by v i r t u e o f h i s / h e r e x i s t e n c e " ( p . 2 6 ) . I t was e v i d e n t t h a t m u t u a l i t y a l s o h e l p e d t h e v i s i t i n g s p o u s e s . The p a r t i c i p a n t s who were a b l e t o s h a r e e x p e r i e n c e s w i t h and t o r e c e i v e an i n t r i n s i c p l e a s u r e f r o m i n t e r a c t i n g w i t h t h e i r s p o u s e s were more a t e a s e w i t h t h e i r s i t u a t i o n t h a n t h o s e who d e r i v e d no p l e a s u r e f r o m t h e i n t e r a c t i o n and f e l t no a f f i n i t y w i t h t h e i r d i s a b l e d s p o u s e s . T h o s e who p e r c e i v e d m u t u a l i t y g a i n e d a s e n s e o f i n t i m a c y f r o m t h e i r i n t e r a c t i o n s w i t h t h e i r d i s a b l e d s p o u s e s and f e l t l e s s t r o u b l e d by t h e i r p r e o c c u p a t i o n . H u m a n i z i n g t h e I n s t i t u t i o n A c e n t r a l i s s u e f o r p a r t i c i p a n t s was w h e t h e r o r n o t t h e y saw t h e ECU as an e n v i r o n m e n t f o r human b e i n g s a n d , t h e r e f o r e , a f i t t i n g e n v i r o n m e n t f o r t h e i r d i s a b l e d s p o u s e s . The p a r t i c i p a n t s h u m a n i z e d t h e e n v i r o n m e n t by f o r m i n g r e l a t i o n s h i p s w i t h o t h e r r e s i d e n t s and t h e i r f a m i l y members and w i t h t h e s t a f f . P a r t i c i p a n t s who d i d n o t h u m a n i z e t h e e n v i r o n m e n t t e n d e d t o s e e t h e s t a f f as u n c a r i n g and i n c o m p e t e n t and t h e o t h e r r e s i d e n t s as 99 n on-humans. T h e y were more d i s t r e s s e d by s e e i n g t h e i r s p o u s e s i n what t h e y p e r c e i v e d t o be a h o s t i l e e n v i r o n m e n t . T h i s i s n o t meant t o i m p l y t h a t t h e i r c o n c e r n s r e g a r d i n g c a r e w ere m e r e l y t h e p r o d u c t o f s l a n t e d p e r c e p t i o n s . As n o t e d e a r l i e r , t h e i r c o n c e r n s seemed e n t i r e l y j u s t i f i e d and n o t u n r e a l i s t i c . R a t h e r , c e r t a i n p a r t i c i p a n t s e x p r e s s e d more n e g a t i v e f e e l i n g s a b o u t t h e i n s t i t u t i o n t h a n o t h e r s e v e n t h o u g h t h e i r s p o u s e s were b e i n g c a r e d f o r i n t h e same ECU a n d , i n some i n s t a n c e s , by t h e same s t a f f . P a r t o f t h e e x p l a n a t i o n f o r p a r t i c i p a n t s ' n e g a t i v e i mage o f t h e ECU may l i e w i t h t h e n e g a t i v e image o f l o n g - t e r m c a r e i n s t i t u t i o n s i n g e n e r a l . B r o d y ( 1 9 7 3 ) a t t r i b u t e d t h i s i mage t o t h e h i s t o r i c a l d e v e l o p m e n t o f i n s t i t u t i o n s f r o m b e i n g r e f u g e s f o r t h e p o o r and t o a g e i s m . Dimond and J o n e s ' s ( 1 9 8 3 ) d i s c u s s i o n o f t h e c o n c e p t o f s t i g m a a l s o h e l p s t o e x p l a i n t h e p a r t i c i p a n t s ' r e a c t i o n s . T h e y n o t e d t h a t s t r u c t u r e d e c r e a s e s a n x i e t y and t h a t p e o p l e d e v e l o p t y p i f i c a t i o n s o f t h e p e r c e p t u a l and e x p e r i e n t i a l w o r l d i n o r d e r t o s t r u c t u r e t h e i r o r i e n t a t i o n t o t h e w o r l d . T h e r e a r e i n d i v i d u a l s who a r e " s o d i s p a r a t e t h a t t h e y a r e n o t n o r m a t i v e , y e t t h e y a r e s t i l l human b e i n g s ; t h e y a r e a m b i g u o u s o r s t i g m a t i z e d human b e i n g s " ( p . 1 7 4 ) . T h e i r a m b i g u i t y a r o u s e s a n x i e t y and f e a r i n o t h e r p e o p l e . The p a r t i c i p a n t s who v i e w e d t h e ECU as an e n v i r o n m e n t f o r non-humans may h a v e been 100 r e a c t i n g t o t h e a m b i g u i t y o r s t i g m a o f r e s i d e n t s who, t h o u g h s t i l l human b e i n g s were p e r c e i v e d as non-human i n t h e i r b e h a v i o u r o r a p p e a r a n c e . T he p a r t i c i p a n t s who g o t t o know r e s i d e n t s were a b l e t o s e e them as u n a m b i g u o u s , human, b e i n g s . I n t e g r a t i n g T h e i r E x p e r i e n c e i n t o t h e C o n t i n u i t y o f T h e i r  L i v e s The i n s t i t u t i o n a l i z a t i o n o f a s p o u s e i n t h e ECU was s e e n as p a r t o f a p r o c e s s o f c h a n g e by t h e p a r t i c i p a n t s . T h e i r s t o r i e s d e s c r i b i n g t h e e v e n t s l e a d i n g up t o t h e i r s p o u s e s ' a d m i s s i o n t o t h e ECU s u g g e s t e d t h a t t h e a c t u a l a d m i s s i o n was n o t a c r i s i s b u t , r a t h e r , a m a r k e r e v e n t . F o r many p a r t i c i p a n t s , t h e i r p s y c h o - s o c i a l t r a n s i t i o n s o r c r i s e s o f d i s c o n t i n u t y had o c c u r r e d l o n g b e f o r e . T h e i r a d j u s t m e n t t o t h e p r o c e s s o f c h a n g e l e f t them w i t h e n d u r i n g a n d , a t t i m e s , p a i n f u l c o n d i t i o n s - - l o n e l i n e s s and a p r e o c c u p a t i o n w i t h t h e i r d i s a b l e d s p o u s e s . A b o u t o n e - h a l f o f t h e p a r t i c i p a n t s saw h a v i n g a s p o u s e i n t h e ECU as an i n t e r r u p t i o n i n t h e i r l i v e s . F o r some, t h e i n t e r r u p t i o n b e g a n w i t h t h e o n s e t o f t h e i r s p o u s e s ' d i s a b i l i t y a n d , f o r o t h e r s , i t b e g a n w i t h t h e i r s p o u s e s ' h o s p i t a l i z a t i o n . M a r r i s ( 1 9 7 5 ) b e l i e v e d t h a t a f t e r a m a j o r l o s s t h e s e n s e o f c o n t i n u i t y o f l i f e c a n o n l y be r e s t o r e d t h r o u g h g r i e f . The p a r t i c i p a n t s had n o t r e s o l v e d t h e b a s i c c h a l l e n g e o f g r i e f - - t o r e s t o r e t h e 101 p a s t o r t o a d j u s t t o a new s i t u a t i o n and i n c o r p o r a t e t h e l o s s . VS: I mean what c a n y o u d o . I c a n ' t t r y t o open up a new l i f e . I'm t i e d t o t h e o l d o n e . B u t t h e n t h e o l d one i s e s s e n t i a l l y c o l l a p s e d . So i n b e t w e e n t h e r e ' s a vacuum. U n a b l e t o e x p l a i n t h e l o s s o f a s p o u s e as she o r he had o n c e b e e n , t h e y were u n a b l e t o r e c o n c i l e t h e two s i d e s o f t h e i r p a r a d o x i c a l s i t u a t i o n . T h e r e was a s e n s e t h a t t h e s e p a r t i c i p a n t s were w a i t i n g t o be r e l e a s e d f r o m a l i m b o s t a t e . T h e y were u n l i k e l y t o p e r c e i v e m u t u a l i t y i n i n t e r a c t i o n s w i t h t h e i r d i s a b l e d s p o u s e s a n d , t h u s , were u n a b l e t o o b t a i n any f e e l i n g o f i n t i m a c y . T h e y saw t h e ECU as an e n v i r o n m e n t f o r non-humans and t h i s p e r s p e c t i v e o n l y i n c r e a s e d p a i n f u l e m o t i o n s a s s o c i a t e d w i t h p r e o c c u p a t i o n . B e i n g a v i s i t i n g s p o u s e had l i t t l e c o n n e c t i o n w i t h m a r r i e d l i f e o r w i t h t h e w o r l d o u t s i d e t h e ECU. O t h e r p a r t i c i p a n t s were a b l e t o i n t e g r a t e h a y i n g a s p o u s e i n an i n s t i t u t i o n i n t o t h e c o n t i n u i t y o f t h e i r l i v e s i n b o t h t i m e and s p a c e . As one woman s a i d , " H i s l i f e h as b e e n c u t s h o r t . M i n e has c h a n g e d d i r e c t i o n . " T h e s e p a r t i c i p a n t s v i e w e d t h e i r own and t h e i r s p o u s e s ' s i t u a t i o n s as p a r t o f t h e i r l i v e s t o g e t h e r . H a v i n g a s p o u s e i n t h e ECU was n o t a s e p a r a t e p a r t o f t h e i r d a y - t o - d a y l i v e s and a l s o , i t was n o t t h e s o l e f o c u s o f t h e i r l i v e s . A l t h o u g h t h e y e x p e r i e n c e d l o n e l i n e s s and p r e o c c u p a t i o n , t h e y t e n d e d t o l e a d r i c h l i v e s . T h e y 102 p e r c e i v e d m u t u a l i t y i n i n t e r a c t i o n s w i t h t h e i r d i s a b l e d s p o u s e s b u t a l s o b e n e f i t t e d f r o m s o c i a l p a r t i c i p a t i o n . H u m a n i z i n g t h e ECU r e d u c e d t h e d i s s o n a n c e b e t w e e n t h e i n s t i t u t i o n a l e n v i r o n m e n t and t h e o u t s i d e w o r l d . By i n t e g r a t i n g t h e i r e x p e r i e n c e i n t o t h e c o n t i n u i t y o f t h e i r l i v e s , t h e y w e re a b l e , i n p a r t , t o r e c o n c i l e t h e a b s e n c e o f an i n t i m a t e r e l a t i o n s h i p i n t h e i r l i v e s w i t h t h e i r c o n t i n u i n g a t t a c h m e n t t o and c a r i n g f o r t h e i r d i s a b l e d s p o u s e s . 103 CHAPTER F I V E Summary, C o n c l u s i o n s , and I m p l i c a t i o n s Summary Few p e o p l e c o u l d d eny t h e p a t h o s o f e l d e r l y p e o p l e f a i t h f u l l y v i s i t i n g t h e i r i n s t i t u t i o n a l i z e d s p o u s e s , day a f t e r d a y , y e a r a f t e r y e a r . Our s o c i e t y a t t a c h e s g r e a t s i g n i f i c a n c e t o m a r r i a g e and t h e f a m i l y . The e x i s t e n c e o f l o n g s t a n d i n g m a r r i a g e s i n w h i c h s p o u s e s h a v e s u s t a i n e d and s u p p o r t e d e a c h o t h e r t h r o u g h t h e j o y s and t r o u b l e s o f a l o n g l i f e t o g e t h e r r e c o n f i r m s o u r f a i t h i n t h e f a m i l y and t h e i n h e r e n t s t r e n g t h and v a l u e o f human r e l a t i o n s h i ps . I t was p a r t l y t h i s e m o t i o n a l r e s p o n s e t o t h e s i g h t o f v i s i t i n g s p o u s e s i n an ECU t h a t s t i m u l a t e d t h e r e s e a r c h e r ' s i n t e r e s t i n t h e i r e x p e r i e n c e s . An a d d i t i o n a l i m p e t u s was t h e b e l i e f t h a t o n l y by w o r k i n g i n c o n c e r t w i t h f a m i l y members r a t h e r t h a n i n o p p o s i t i o n o r i s o l a t i o n c a n n u r s e s e n s u r e t h a t r e s i d e n t s r e t a i n i n d i v i d u a l i t y and c o n n e c t e d n e s s w i t h s o c i e t y . A r e l a t e d b e l i e f was t h a t , i n l o n g - t e r m c a r e s e t t i n g s , t h e f a m i l y r a t h e r t h a n t h e i n d i v i d u a l r e s i d e n t s h o u l d be t h e u n i t o f c a r e . The p a u c i t y o f l i t e r a t u r e s p e c i f i c t o t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e o n l y e m p h a s i z e d t h e n e e d f o r f u r t h e r 104 r e s e a r c h . T h e i r f r e q u e n t v i s i t i n g was a s c r i b e d t o g u i l t and t h e i r c o n f l i c t w i t h s t a f f was v i e w e d as an e x p r e s s i o n o f i n t e r n a l c o n f l i c t . I n s t i t u t i o n a l i z a t i o n was i m p l i c i t l y o r e x p l i c i t l y r e g a r d e d as a c r i s i s . T h e r e was a l s o t h e i m p l i c i t a s s u m p t i o n t h a t t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e was s i m i l a r t o t h a t o f o t h e r f a m i l y members s u c h as t h e a d u l t c h i l d r e n o f t h e i n s t i t u t i o n a l i z e d e l d e r l y . Y e t , t h e l i t e r a t u r e on b e r e a v e m e n t and d i v o r c e i l l u s t r a t e d t h e t r a u m a t i c e f f e c t s o f d i s r u p t i n g t h e m a r i t a l b o n d and l e n t c r e d e n c e t o t h e b e l i e f t h a t t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e was u n i q u e . T h i s s t u d y e x p l o r e d t h e v i s i t i n g s p o u s e ' s e x p e r i e n c e u s i n g t h e UBC Model f o r N u r s i n g ( 1 9 8 0 ) . The Model f a c i l i t a t e d a b r o a d a s s e s s m e n t as w e l l as a l l o w i n g t h e r e s e a r c h e r t h e f l e x i b i l i t y n e c e s s a r y f o r i n t e n s e s t u d y . R e l a t i v e l y u n s t r u c t u r e d i n t e r v i e w s were c o n d u c t e d w i t h n i n e v i s i t i n g s p o u s e s . The d a t a were i n i t i a l l y c o d e d i n t o t h r e e c a t e g o r i e s c o r r e s p o n d i n g t o t h e p u r p o s e o f t h e s t u d y , t h a t i s , t h e i m p a c t o f h a v i n g a s p o u s e i n an ECU on t h e i r l i v e s , t h e c o p i n g b e h a v i o u r s t h e y u s e d , and t h e f a c t o r s i n f l u e n c i n g o r d e t e r m i n i n g c o p i n g b e h a v i o u r s . D u r i n g t h e p r o c e s s o f c o n s t a n t c o m p a r a t i v e a n a l y s i s , t h e m e s , c a t e g o r i e s , c o n c e p t s , and t h e i r p r o p e r t i e s e m e r g e d . R a t h e r t h a n v i e w i n g t h e i n s t i t u t i o n a l i z a t i o n o f a s p o u s e as a c r i s i s , p a r t i c i p a n t s saw i t as p a r t o f a p r o c e s s o f c h a n g e . T h e i r s t o r i e s o f how t h e y became 105 v i s i t i n g s p o u s e s c o n t a i n e d c e r t a i n common e l e m e n t s . O t h e r c a t e g o r i e s and c o n c e p t s d e s c r i b e d what i t i s l i k e t o be a v i s i t i n g s p o u s e . A l l t h e p a r t i c i p a n t s saw t h e i m p a c t o f b e i n g v i s i t i n g s p o u s e s as l e a v i n g them w i t h two e n d u r i n g c o n d i t i o n s : c h r o n i c l o n e l i n e s s a nd p r e o c c u p a t i o n w i t h t h e i r d i s a b l e d s p o u s e s . T h e s e two c o n c e p t s were i n t e r p r e t e d as r e f l e c t i o n s o f b e h a v i o u r a l s y s t e m i m b a l a n c e r e s u l t i n g f r o m t h e a b s e n c e o f i n t i m a c y i n t h e i r l i v e s and t h e i r c o n t i n u i n g c a r i n g f o r and a t t a c h m e n t t o t h e i r d i s a b l e d s p o u s e s . T h e y a t t r i b u t e d t h e i r v i s i t i n g t o t h e e x i s t e n c e o f t h e m a r i t a l b o n d . No p a r t i c i p a n t e x p r e s s e d g u i l t . I n s t e a d , t h e i r f e e l i n g s were a mix o f r e g r e t and s o r r o w , p u r p o s e l e s s n e s s , d e p r e s s i o n , and l o w e r e d s e l f - e s t e e m . The i n t e n s i t y o f t h e i m p a c t v a r i e d f r o m one p a r t i c i p a n t t o a n o t h e r . Some were r e l a t i v e l y a t p e a c e w i t h t h e m s e l v e s and t h e i r l i v e s and o t h e r s were more t r o u b l e d by t h e i r s i t u a t i o n . W i t h i n and b e t w e e n e a c h v i s i t i n g s p o u s e , a w i d e v a r i e t y o f c o p i n g b e h a v i o u r s e x i s t e d w h i c h w e r e , i n t u r n , i n f l u e n c e d o r d e t e r m i n e d by a v a r i e t y o f f a c t o r s . T h e s e c l u s t e r s o f c o p i n g b e h a v i o u r s and i n f l u e n c i n g f a c t o r s c e n t r e d on f o u r a s p e c t s o f t h e i r e x p e r i e n c e - - t h e i r r e l a t i o n s h i p w i t h t h e i r d i s a b l e d s p o u s e , p a i n f u l e m o t i o n s , t h e r o l e s 106 f o r m e r l y f i l l e d by t h e d i s a b l e d s p o u s e , and s o c i a l p a r t i c i p a t i o n . The c o r e c o n c e p t s o f p e r c e i v i n g m u t u a l i t y i n i n t e r a c t i o n s w i t h t h e d i s a b l e d s p o u s e , h u m a n i z i n g t h e i n s t i t u t i o n , and i n t e g r a t i n g t h e e x p e r i e n c e i n t o t h e c o n t i n u i t y o f l i f e p e r v a d e d a l l a s p e c t s o f t h e i r d a y - t o - d a y l i v e s . The s a m p l e was e a s i l y d i v i d e d a c c o r d i n g t o t h e c o r e c o n c e p t s : v i s i t i n g s p o u s e s who g a i n e d an i n t r i n s i c p l e a s u r e f r o m i n t e r a c t i o n s w i t h t h e i r d i s a b l e d s p o u s e s and t h o s e who f o u n d i n t e r a c t i o n s a s o u r c e o f p a i n ; t h o s e who v i e w e d t h e ECU as an e n v i r o n m e n t f o r human b e i n g s and t h o s e who saw i t as a h o s t i l e , non-human e n v i r o n m e n t ; a n d , t h o s e who i n t e g r a t e d h a v i n g a s p o u s e i n t h e ECU i n t o t h e c o n t i n u i t y o f t h e i r l i v e s and t h o s e who saw i t as an i n t e r r u p t i o n i n t h e i r l i v e s . T h i s l a s t c o r e c o n c e p t s u b s u m e d t h e o t h e r two. B e i n g a b l e t o i n t e g r a t e t h e i r e x p e r i e n c e a l l o w e d v i s i t i n g s p o u s e s t o make s e n s e o f and r e c o n c i l e t h e b a s i c p a r a d o x o f t h e i r s i t u a t i o n - - t h e a b s e n c e o f t h e i r s p o u s e a t home and h i s o r h e r c o n t i n u i n g p r e s e n c e i n t h e ECU. C o n c l u s i o n s 1. The i n s t i t u t i o n a l i z a t i o n o f a s p o u s e a s s u m e s t h e s t a t u s o f a m a r k e r e v e n t d r a m a t i z i n g and p u n c t u a t i n g a p r o c e s s o f c h a n g e . The p a r t i c i p a n t s ' m a j o r l o s s e s , t h e i r 107 c r i s e s o f d i s c o n t i n u i t y , h a p p e n e d l o n g b e f o r e t h e i r d i s a b l e d s p o u s e s ' a c t u a l a d m i s s i o n . H a v i n g a s p o u s e i n an ECU i s l i k e t h e c h r o n i c s t r a i n s o f l i f e d e s c r i b e d by P e a r l i n ( 1 9 8 0 ) , n o t a d i s c r e t e c r i t i c a l p e r i o d b u t an o n g o i n g s i t u a t i o n c h a r a c t e r i z e d by u n c e r t a i n t y and u n c o n t r o l 1 a b i 1 i t y . T h u s , we c a n n o t assume t h a t , b e c a u s e an i n d i v i d u a l has be e n a v i s i t i n g s p o u s e f o r many y e a r s , he o r she has a d j u s t e d t o t h e s i t u a t i o n . 2. T h e r e were c o m m o n a l i t i e s i n t h e p a r t i c i p a n t s ' d e s c r i p t i o n o f t h e i r e x p e r i e n c e b u t t h e r e were j u s t as many v a r i a t i o n s . T he i n d i v i d u a l i t y o f t h e i r a c c o u n t s e m p h a s i z e s t h e d a n g e r o f a s s u m i n g t h a t , f o r e x a m p l e , a l l f a m i l y members a r e p l a g u e d by g u i l t o r t h a t c o n f l i c t w i t h s t a f f i s a p r o j e c t i o n o f i n t e r n a l c o n f l i c t s . S u c h a s s u m p t i o n s c o n t r i b u t e t o n e g a t i v e s t e r e o t y p e s o f f a m i l y members o f t h e i n s t i t u t i o n a l i z e d e l d e r l y and c o u l d p o s s i b l y i n h i b i t n u r s e s and o t h e r h e a l t h c a r e p r o f e s s i o n a l s f r o m i n t e r a c t i n g w i t h f a m i l y members i n an u n b i a s e d , h e l p i n g m a n n e r . 3. T he l i t e r a t u r e i n d i c a t e d t h a t f r e q u e n t v i s i t i n g by s p o u s e s s h o u l d be a m a t t e r o f c o n c e r n t o h e a l t h c a r e p r o f e s s i o n a l s . In t h e r e s e a r c h e r ' s c l i n i c a l e x p e r i e n c e , many n u r s e s s h a r e t h e same i n t e r p r e t a t i o n . Many p a r t i c i p a n t s were e x h a u s t e d by h a v i n g t h e i r l i v e s d i c t a t e d by t h e i r s p o u s e s ' p r e s e n c e i n t h e ECU. V i s i t i n g was a s o u r c e o f a n g u i s h f o r some, b u t f o r o t h e r s , i t 108 o f f e r e d a p u r p o s e i n l i f e and a f o c a l p o i n t t o t h e i r d a y s . F o r s t i l l o t h e r s , i t a l l o w e d them t o o b t a i n a d e g r e e o f i n t i m a c y . T h u s , t h e same b e h a v i o u r , v i s i t i n g , h as d i f f e r e n t m e a n i n g s f o r d i f f e r e n t i n d i v i d u a l s . G e n e r a l i z a t i o n s b a s e d on one i n t e r p r e t a t i o n i g n o r e t h e s e d i f f e r e n t m e a n i n g s . 4. The q u a l i t y o f t h e i n t e r a c t i o n s v i s i t i n g s p o u s e s have w i t h t h e i r d i s a b l e d s p o u s e s and w i t h p e o p l e i n t h e i n s t i t u t i o n a l e n v i r o n m e n t a r e o f g r e a t i m p o r t a n c e i n d e t e r m i n i n g w h e t h e r v i s i t i n g s p o u s e s a r e a b l e t o i n t e g r a t e t h e i r e x p e r i e n c e i n t o t h e c o n t i n u i t y o f l i f e . I m p l i c a t i o n s f o r N u r s i n g P r a c t i c e B r o d y ( 1 9 7 3 ) o b s e r v e d t h a t " i t i s i r o n i c t h a t d e s p i t e u n i v e r s a l e m p h a s i s on t h e v a l u e o f o l d e r p e o p l e l i v i n g i n t h e i r own home, t h e o n l y s o c i a l i n s t i t u t i o n t h a t has n o t c o n t r i b u t e d s i g n i f i c a n t l y t o t h e s h a p e o f l o n g t e r m c a r e i s t h e i n d i v i d u a l ' s own home" ( p . 4 3 4 ) . The p r e s e n t s t u d y i l l u s t r a t e s t h e i m p o r t a n c e o f h e r o b s e r v a t i o n . Many o f t h e p a r t i c i p a n t s s p e n t a g r e a t d e a l o f t i m e i n t h e ECU a n d , i n t h a t r e s p e c t , i t had become t h e i r s e c o n d home. Y e t , some o f them were a l i e n a t e d by t h e e n v i r o n m e n t . T h e y saw t h e ECU as a " h o r r o r . " N u r s e s may n o t be a b l e t o c h a n g e v i s i t i n g s p o u s e s ' b a s i c a t t i t u d e s b u t t h e y c a n do much t o make t h e ECU more h o m e l i k e and 109 more human. In a home, p e o p l e a r e t r e a t e d as i n d i v i d u a l s w i t h a p a s t , p r e s e n t , and f u t u r e . In l o n g - t e r m c a r e s e t t i n g s , i t i s e a s y t o " p i g e o n - h o l e " r e s i d e n t s b e c a u s e many o f them s h a r e common d i s a b i l i t i e s a nd h a v e common n u r s i n g n e e d s . The e f f e c t o f t h i s p i g e o n - h o l i n g i s t o deny t h e i n d i v i d u a l i t y and h u m a n i t y o f e a c h r e s i d e n t . The p a r t i c i p a n t s who saw r e s i d e n t s as n o n - a w a r e b e i n g s w e r e , i n p a r t , i n f l u e n c e d by what t h e y p e r c e i v e d t o be t h e a t t i t u d e o f t h e s t a f f . We must a l s o a t t e m p t t o a v o i d s t e r e o t y p i n g v i s i t i n g s p o u s e s o r f a m i l y members i n g e n e r a l . G e n e r a l i z a t i o n s a b o u t t h e i r b e h a v i o u r a r e m i s l e a d i n g . T h i s s t u d y h i g h l i g h t s t h e i m p o r t a n c e o f a s s e s s i n g v i s i t i n g s p o u s e s as i n d i v i d u a l s . F o r e x a m p l e , we must ask what n e e d s d o e s t h i s i n d i v i d u a l meet by v i s i t i n g f r e q u e n t l y o r what i s l o n e l i n e s s d o i n g t o t h i s i n d i v i d u a l . P a r t i c i p a n t s h u m a n i z e d t h e ECU by g e t t i n g t o know t h e s t a f f , o t h e r r e s i d e n t s , and t h e i r f a m i l i e s . T h i s s t u d y i n d i c a t e d t h a t n u r s e s c a n n o t assume v i s i t i n g s p o u s e s , p a r t i c u l a r l y m a l e v i s i t i n g s p o u s e s , w i l l i n i t i a t e t h i s c o p i n g b e h a v i o u r . F o r m a l s u p p o r t g r o u p s a r e o f b e n e f i t b u t t h e d a y - t o - d a y i n t e r a c t i o n s b e t w e e n n u r s e s and v i s i t i n g s p o u s e s c a n be e q u a l l y e f f e c t i v e and t h e r a p e u t i c . N u r s e s c a n g e t t o know v i s i t i n g s p o u s e s , i n t r o d u c e them t o o t h e r v i s i t i n g f a m i l y members, a n d , l i k e t h e n u r s e i n one p a r t i c i p a n t ' s a c c o u n t , r e a s s u r e new 110 v i s i t i n g s p o u s e s o r o t h e r f a m i l y members t h a t by g e t t i n g t o know o t h e r r e s i d e n t s t h e y w i l l f e e l more a t e a s e i n t h e i n s t i t u t i o n a l e n v i r o n m e n t . T h e s e n u r s i n g i n t e r v e n t i o n s s h o u l d s t a r t as s o o n as t h e e l d e r l y d i s a b l e d p e r s o n i s a d m i t t e d t o t h e i n s t i t u t i o n . When v i s i t i n g s p o u s e s , o r f o r t h a t m a t t e r , o t h e r v i s i t i n g f a m i l y members, a r e w e l c o m e d a n d made t o f e e l " a t home" f r o m t h e b e g i n n i n g much c o n f l i c t and m i s u n d e r s t a n d i n g c a n be a v o i d e d . I t was i m p o r t a n t t o t h e p a r t i c i p a n t s t h a t t h e y saw t h e n u r s e s as c a r i n g and c o m p e t e n t . S e v e r a l f e l t t h e i r c o n c e r n s were l i s t e n e d t o , t r e a t e d w i t h r e s p e c t , and were a c t e d u p o n . O t h e r s were f r u s t r a t e d by t r y i n g t o a c t as an a d v o c a t e f o r t h e i r d i s a b l e d s p o u s e s and n o t h a v i n g t h e i r s u g g e s t i o n s o r c o n c e r n s r e s p o n d e d t o . S t a f f o f t e n f e e l t h a t l o n g - t e r m c a r e i n s t i t u t i o n s a r e u n d e r s t a f f e d and t h a t t h e y a r e o v e r - w o r k e d b u t i f we t r u l y want t o e n g a g e f a m i l y members as p a r t n e r s i n c a r e we must make s p e c i a l e f f o r t s t o r e s p o n d t o t h e i r s u g g e s t i o n s and c o n c e r n s . S u b s t i t u t i n g n o n - p r o f e s s i o n a l s t a f f f o r p r o f e s s i o n a l s t a f f i n l o n g - t e r m c a r e i n s t i t u t i o n s i s o f t e n j u s t i f i e d by s t a t i n g t h a t s t a f f c a n be " t r a i n e d " t o c a r e f o r t h e e l d e r l y r e s i d e n t s . The p a r t i c i p a n t s i n d i c a t e d t h e f a l l a c y o f s u c h an a r g u m e n t f o r t h e y p e r c e i v e d c l e a r d i f f e r e n c e s i n t h e q u a l i t y o f c a r e I l l p r o v i d e d by p r o f e s s i o n a l v e r s u s n o n - p r o f e s s i o n a l n u r s i n g s t a f f . I n f l u e n c i n g t h e d e g r e e o f m u t u a l i t y v i s i t i n g s p o u s e s p e r c e i v e i n i n t e r a c t i o n s w i t h t h e i r d i s a b l e d s p o u s e s may be b e y o n d t h e n u r s e s ' c o n t r o l . B u t we c a n h e l p c r e a t e a more i n t i m a t e e n v i r o n m e n t by a d v o c a t i n g t h e u s e o f f a m i l y v i s i t i n g r o o m s . N u r s e s c a n a l s o h e l p v i s i t i n g s p o u s e s s o l v e l o g i s t i c a l p r o b l e m s a s s o c i a t e d w i t h t a k i n g t h e i r d i s a b l e d s p o u s e s on o u t i n g s o r home. E n c o u r a g i n g them t o p a r t i c i p a t e i n s h a r i n g a c t i v i t i e s s u c h as g a r d e n i n g , g o i n g f o r w a l k s , o r p l a y i n g games t o g e t h e r may e n h a n c e m u t u a l i t y . Where a d i s a b l e d s p o u s e ' s d i s t u r b i n g b e h a v i o u r s i n t e r f e r e w i t h s h a r i n g a c t i v i t i e s , n u r s e s c a n h e l p a v i s i t i n g s p o u s e d e v i s e s t r a t e g i e s f o r d e a l i n g w i t h t h e s e b e h a v i o u r s and f o r l e s s e n i n g t h e i r h a r m f u l e f f e c t on him o r h e r . I t was i m p o r t a n t t o t h e p a r t i c i p a n t s t h a t t h e i r d i s a b l e d s p o u s e s a p p r e c i a t e d t h e i r e f f o r t s . N u r s e s a l s o c a n p r o v i d e t h i s k i n d o f f e e d b a c k t o v i s i t i n g s p o u s e s , f o r e x a m p l e , by p r a i s i n g t h e i r e f f o r t s t o p r e v e n t c o n t r a c t i o n s i n t h e s p o u s e s ' h a n d s . P e r h a p s m o s t i m p o r t a n t l y , n u r s e s c a n h e l p v i s i t i n g s p o u s e s a t t a i n and be c o m f o r t a b l e w i t h a r e a l i s t i c i m age o f t h e i r d i s a b l e d s p o u s e s , t h e i r c a p a c i t i e s , and t h e i r d i s a b i l i t i e s . Much o f t h e work i n v o l v e d i n i n t e g r a t i n g t h e i r e x p e r i e n c e i n t o t h e c o n t i n u i t y o f t h e i r l i v e s must be done by t h e v i s i t i n g s p o u s e , b u t n u r s e s c a n o f f e r some 1 1 2 a s s i s t a n c e . V i s i t i n g s p o u s e s who f o c u s t h e i r l i v e s on t h e i r d i s a b l e d s p o u s e s b u t who seem t o f e e l no s e n s e o f p u r p o s e i n t h e i r l i v e s c o u l d be h e l p e d t o c o m b i n e t h e i r f r e q u e n t v i s i t i n g w i t h f u l f i l l i n g some o t h e r f u n c t i o n i n t h e ECU s u c h as o r g a n i z i n g s o c i a l g a t h e r i n g s w i t h o t h e r v i s i t i n g s p o u s e s . O t h e r s who a r e s t r u g g l i n g w i t h r e s o l v i n g t h e i r p a r a d o x i c a l s i t u a t i o n may n e e d t o be g i v e n p e r m i s s i o n t o h a v e i n t e r e s t s o t h e r t h a n t h e i r p r e o c c u p a t i o n . S t i l l o t h e r s who h a v e s u c c e s s f u l l y i n t e g r a t e d h a v i n g a s p o u s e i n an ECU c o u l d be u s e d as c o n s u l t a n t s t o t h o s e who h a v e n o t . I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n N u r s i n g c u r r i c u l a s h o u l d e m p h a s i z e t h a t e a c h c l i e n t i s p a r t o f a c o m m u n i t y o f p e o p l e , w h e t h e r i t i s h i s o r h e r f a m i l y , a n e t w o r k o f f r i e n d s , o r t h e l a r g e r s o c i e t y . In o r i e n t i n g n u r s i n g s t u d e n t s t o t h e p h i l o s o p h y o f l o n g - t e r m c a r e , t h e f a m i l y r a t h e r t h a n t h e e l d e r l y c l i e n t s h o u l d be p r o m o t e d as t h e u n i t o f c a r e . S t u d e n t s s h o u l d be made aware o f t h e s t e r e o t y p e s a s s o c i a t e d w i t h t h e e l d e r l y , l o n g - t e r m c a r e i n s t i t u t i o n s , and t h e f a m i l y members o f t h e i n s t i t u t i o n a l i z e d e l d e r l y . J u s t as t h e v i s i t i n g s p o u s e s r e d u c e d t h e s t i g m a a t t a c h e d t o t h e ECU by g e t t i n g t o know o t h e r r e s i d e n t s , n u r s i n g s t u d e n t s n e e d t o g e t t o know t h e e l d e r l y as a g r o u p , and as i n d i v i d u a l s w i t h a p a s t , p r e s e n t , and f u t u r e . 1 1 3 I m p l i c a t i o n s f o r N u r s i n g R e s e a r c h T h i s s t u d y h as f o c u s e d on t h e e x p e r i e n c e o f v i s i t i n g s p o u s e s . S i n c e i t has e m p h a s i z e d t h e i m p o r t a n c e o f v i e w i n g t h e f a m i l y r a t h e r t h a n t h e i n d i v i d u a l r e s i d e n t as t h e u n i t o f c a r e , f u r t h e r r e s e a r c h n e e d s t o be done on t h e e x p e r i e n c e o f t h e f a m i l y o f r e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s . The p r e s e n t s t u d y h as e x p l o r e d o n l y one f a c e t o f t h i s e x p e r i e n c e w i t h o u t c o n s i d e r i n g f a m i l y dynami c s . T h e r e were i n d i c a t i o n s t h a t v i s i t i n g s p o u s e s e x p e r i e n c e d a p r o c e s s o f c h a n g e a f t e r t h e i r s p o u s e s ' a d m i s s i o n t o t h e ECU. A l o n g i t u d i n a l s t u d y o f t h e i r a d j u s t m e n t w o u l d y i e l d much i n f o r m a t i o n t h a t c o u l d be u s e d t o h e l p v i s i t i n g s p o u s e s a n t i c i p a t e c h a n g e s and t o h e l p s t a f f i n i n t e r a c t i n g w i t h v i s i t i n g s p o u s e s . The r e s p o n s i b i l i t y f o r t h e d e c i s i o n t o i n s t i t u t i o n a l i z e t h e i r d i s a b l e d s p o u s e s was v i r t u a l l y t a k e n away f r o m t h e p a r t i c i p a n t s i n t h i s s t u d y . F u r t h e r r e s e a r c h c o u l d e x p l o r e t h e e f f e c t s o f t h i s s u r r e n d e r i n g o f c o n t r o l on t h e i r s u b s e q u e n t a d j u s t m e n t a n d , i n a d d i t i o n , c o u l d i n v e s t i g a t e how h e a l t h c a r e p r o f e s s i o n a l s j u s t i f i e d t h e i r p a t e r n a l i s t i c b e h a v i o u r . The c o n c e p t o f h u m a n i z i n g t h e i n s t i t u t i o n i n t r o d u c e s many a v e n u e s o f i n q u i r y t o n u r s e r e s e a r c h e r s . Q u a n t i t a t i v e s t u d i e s s h o u l d be c o n d u c t e d t o i s o l a t e t h e f a c t o r s t h a t b e s t h u m a n i z e an i n s t i t u t i o n . The e f f e c t s 114 o f h u m a n i z i n g on v i s i t i n g s p o u s e s ' o r f a m i l y members' p e r c e p t i o n s o f t h e i n s t i t u t i o n and o f t h e i r e l d e r l y r e l a t i v e s c o u l d t h e n be m e a s u r e d . T h i s s t u d y d r a m a t i z e d t h e i m p o r t a n c e o f i n t i m a c y t o human b e i n g s . R e s i d e n t s o f l o n g - t e r m c a r e i n s t i t u t i o n s a r e r e m o v e d f r o m t h e i r f a m i l i a r e n v i r o n m e n t s and m u s t l i v e w i t h p e o p l e t h e y h a v e n o t known b e f o r e . A r e t h e y s t a r v e d o f i n t i m a c y o r has t h e i r " t h r e s h o l d " f o r i n t i m a c y c h a n g e d i n some way? F u r t h e r i n v e s t i g a t i o n i s n e e d e d t o i d e n t i f y t h e n u r s i n g b e h a v i o u r s t h a t h e l p r e s i d e n t s meet t h e i r n e e d f o r i n t i m a c y . The i n d i v i d u a l i t y o f e a c h v i s i t i n g s p o u s e r a n t h r o u g h t h e i r a c c o u n t s . N u r s i n g a s s e s s m e n t s commonly f o c u s on t h e r e s i d e n t and i n c l u d e t h e f a m i l y o n l y i n t e r m s o f how many f a m i l y members t h e r e a r e . F u r t h e r r e s e a r c h i s n e e d e d t o d e t e r m i n e what f a m i l y members want n u r s i n g s t a f f t o know a b o u t them and how t h e y s e e t h e m s e l v e s f u n c t i o n i n g i n a p a r t n e r s h i p w i t h t h e i n s t i t u t i o n . D i f f e r e n c e s . b e t w e e n t h e r e s p o n s e s o f m a l e p a r t i c i p a n t s and f e m a l e p a r t i c i p a n t s were e v i d e n t i n t h e f i n d i n g s . A l t h o u g h t h e s m a l l s a m p l e makes g e n e r a l i z a t i o n s d i f f i c u l t , t h e women seemed t o h a v e a d j u s t e d t o t h e i r s i t u a t i o n w i t h a g r e a t e r d e g r e e o f e q u a n i m i t y . F u r t h e r r e s e a r c h , u s i n g a l a r g e r s a m p l e , i s n e c e s s a r y t o d e t e r m i n e w h e t h e r g e n d e r d i f f e r e n c e s e x i s t 115 and t h e n t o c l a r i f y and u n d e r s t a n d t h e f a c t o r s r e s p o n s i b l e f o r t h e s e d i f f e r e n c e s . T h i s s t u d y has e m p h a s i z e d t h e i m p o r t a n c e o f u n d e r s t a n d i n g t h e m e a n i n g v i s i t i n g s p o u s e s a s c r i b e t o b e i n g a v i s i t i n g s p o u s e . F u r t h e r r e s e a r c h s h o u l d e x p l o r e , i n more d e p t h , t h e f a c t o r s t h a t i n f l u e n c e o r d e t e r m i n e how v i s i t i n g s p o u s e s make s e n s e o f t h e i r e x p e r i e n c e and how t h a t k n o w l e d g e c a n be u s e d t o i m p r o v e t h e q u a l i t y o f c a r e p r o v i d e d t o b o t h s p o u s e s . 116 F o o t n o t e s The t e r m " e l d e r l y " r e f e r s t o i n d i v i d u a l s 65 y e a r s o f age and o v e r . 2 T h e s e w r i t e r s and o t h e r s h a v e c a l l e d t h e s p o u s e s o f t h e i n s t i t u t i o n a l i z e d e l d e r l y , " c o m m u n i t y s p o u s e s . " F o r t h e s a k e o f c l a r i t y and c o n s i s t e n c y , t h e t e r m " v i s i t i n g s p o u s e s " w i l l be u s e d . 117 B i b l i o g r a p h y A b u - L a b a n , S. M. ( 1 9 8 0 ) . The f a m i l y l i f e o f o l d e r C a n a d i a n s . In V. M. M a r s h a l l , A g i n g i n C a n a d a ( p p . 125-134 ) . Don M i l l s , O n t . : F i t z h e n r y & Whi t e s i d e . A t c h l e y , R. ( 1 9 8 0 ) . The s o c i a l f o r c e s i n l a t e r l i f e ( 3 r d e d . ) . B e l m o n t , CA: W a d s w o r t h . A v e r i l l , J . A. ( 1 9 6 8 ) . G r i e f : I t s n a t u r e and s i g n i f i c a n c e . P s y c h o l o g i c a l B u l l e t i n , 70, 7 2 1 - 7 4 8 . B e r e z i n , M. A. ( 1 9 7 0 ) . The p s y c h i a t r i s t and t h e g e r i a t r i c p a t i e n t : P a r t i a l g r i e f i n f a m i l y members and o t h e r s who c a r e f o r t h e e l d e r l y p a t i e n t . J o u r n a l o f  G e r i a t r i c P s y c h i a t r y , £ , 5 3 - 6 4 . B l o o m , B. L . , W h i t e , S. W., & A s h e r , S. J . ( 1 9 7 9 ) . M a r i t a l d i s r u p t i o n as a s t r e s s f u l l i f e e v e n t . In G. L e v i n g e r & 0. C. M o l e s ( E d s . ) , D i v o r c e and  s e p a r a t i on ( p p . 1 8 4 - 2 0 0 ) . New Y o r k : B a s i c B o o k s . B o w k e r , L. H. ( 1 9 8 2 ) . H u m a n i z i n g i n s t i t u t i o n s f o r t h e  a g e d . L e x i n g t o n , MA~i D . C. H e a t h . B o w l b y , J . ( 1 9 6 1 ) . P r o c e s s e s o f m o u r n i n g . I n t e r n a t i o n a l J o u r n a l o f P s y c h o - A n a l y s i s , 42, 3 1 7 - 3 4 0 . — B r a n d w e i n , C , P o s t o f f , R., & S t e i n b e r g , T. ( 1 9 7 9 , N o v e m b e r ) . The " m a r r i e d w i d o w ( e r ) " : A new r o l e . P a p e r p r e s e n t e d a t t h e 32nd A n n u a l S c i e n t i f i c M e e t i n g o f t h e G e r o n t o l o g i c a l S o c i e t y , W a s h i n g t o n , DC. B r o d y , E . M. ( 1 9 7 3 ) . A m i l l i o n P r o c r u s t e a n b e d s . G e r o n t o l o g i s t , 13 , 4 3 0 - 4 3 5 . Brown, G. W. ( 1 9 7 4 ) . M e a n i n g , m e a s u r e m e n t , and s t r e s s o f l i f e e v e n t s . In B. S. D o h r e n w e n d & B. P. D o h r e n w e n d ( E d s . ) , S t r e s s f u l l i f e e v e n t s : T h e i r n a t u r e &  e f f e c t s ( p p . 2 1 7 - 2 4 3 ) . New Y o r k : J o h n W i l e y & S o n s . C h i r i b o g a , D. A. ( 1 9 8 2 a ) . A d a p t a t i o n t o m a r i t a l s e p a r a t i o n i n l a t e r and e a r l i e r l i f e . J o u r n a l o f  G e r o n t o l o g y , _37 , 109-114 . 118 C h i r i b o g a , D. A. ( 1 9 8 2 b ) . An e x a m i n a t i o n o f l i f e e v e n t s as p o s s i b l e a n t e c e d e n t s t o c h a n g e . J o u r n a l o f  G e r o n t o l o g y , 37_, 595-601 . C r o s s m a n , L . , L o n d o n , C , & B a r r y , C. ( 1 9 8 1 ) . O l d e r women c a r i n g f o r d i s a b l e d s p o u s e s : A model f o r s u p p o r t i v e s e r v i c e s . G e r o n t o l o g i s t , 21 , 464-470 . D i e r s , D. ( 1 9 7 9 ) . 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P e r l m a n ( E d s . ) , L o n e l i n e s s ( p p . 1 3 5 - 1 5 1 ) . New Y o r k : J o h n W i l e y & S o n s . P e p l a u , L. A., & P e r l m a n , D. ( 1 9 8 2 ) . P e r s p e c t i v e s on l o n e l i n e s s . In L. A. P e p l a u & D. P e r l m a n ( E d s . ) , L o n e l i n e s s ( p p . 1 - 1 8 ) . New Y o r k : J o h n W i l e y & S o n s . P e r e t z , D. ( 1 9 7 0 ) . D e v e l o p m e n t , o b j e c t - r e l a t i o n s h i p s , and l o s s . In B. S c h o e n b e r g , A. C. C a r r , D. P e r e t z , & A. H. K u t s c h e r ( E d s . ) , L o s s a n d g r i e f : P s y c h o l o g i c a 1  management i n m e d i c a l p r a c t i c e ( p p . 3 - 1 9 ) . New Y o r k : C o l u m b i a U n i v e r s i t y P r e s s . R i s t , R. C. ( 1 9 7 9 , Summer). On t h e means o f k n o w i n g : Q u a l i t a t i v e r e s e a r c h i n e d u c a t i o n . New Y o r k  U n i v e r s i t y E d u c a t i o n Q u a r t e r l y , 17-2TT R u b e n s t e i n , C , & S h a v e r , P. ( 1 9 8 2 ) . The e x p e r i e n c e o f l o n e l i n e s s . In L. A. P e p l a u & D. P e r l m a n ( E d s . ) , L o n e l i n e s s ( p p . 206-223 ) . New Y o r k : J o h n W i l e y & S o n s . ~~ R u b i n , Z. ( 1 9 7 4 ) . L i k i n g and l o v i n g . In Z. R u b i n ( E d . ) , D o i n g u n t o o t h e r s ( p p . 1 6 3 - 1 7 4 ) . E n g l e w o o d C l i f f s , N J : P r e n t i c e - H a l 1. R u c h , L. 0. ( 1 9 7 7 ) . A m u l t i d i m e n s i o n a l a n a l y s i s o f t h e c o n c e p t o f l i f e c h a n g e . J o u r n a l o f H e a l t h and S o c i a l  B e h a v i o r , 1 8 ( 3 ) , 7 1 - 8 3 . 124 S a f f o r d , F. ( 1 9 8 0 ) . A p r o g r a m f o r f a m i l i e s o f t h e m e n t a l l y i m p a i r e d e l d e r l y . G e r o n t o l o g i s t , 20, 6 5 6 - 6 6 0 . S a n f o r d , J . R. A. ( 1 9 7 5 ) . T o l e r a n c e o f d e b i l i t y i n e l d e r l y d e p e n d a n t s by s u p p o r t e r s a t home: I t s s i g n i f i c a n c e f o r h o s p i t a l p r a c t i c e . B r i t i s h M e d i c a l  J o u r n a l , 3, 4 7 1 - 4 7 3 . S e l l t i z , C , W r i g h t s m a n , L . S., & Cook, S. W. ( 1976 ) . R e s e a r c h m e t h o d s i n s o c i a l r e l a t i o n s ( 3 r d e d . ) . New Y o r k : H o l t , R i n e h a r t & W i n s t o n . S h a n a s , E . ( 1 9 7 9 ) . The f a m i l y as a s o c i a l s u p p o r t s y s t e m i n o l d a g e . G e r o n t o l o g i s t , 19 , 169-174 . S m a l l e g a n , M. ( 1 9 8 5 ) . T h e r e was n o t h i n g e l s e t o do: Needs f o r c a r e b e f o r e n u r s i n g home a d m i s s i o n . G e r o n t o l o g i s t , 25 , 364-369 . S m i t h , K. F., & B e n g t s o n , V. L . ( 1 9 7 9 ) . P o s i t i v e c o n s e q u e n c e s o f i n s t i t u t i o n a l i z a t i o n : S o l i d a r i t y b e t w e e n e l d e r l y p a r e n t s and t h e i r m i d d l e - a g e d c h i l d r e n . G e r o n t o l o g i s t , 19 , 438-447 . S t a t i s t i c s C a n a d a . ( 1 9 8 2 ) . C a n a d i a n g o v e r n m e n t a l r e p o r t  on a g i n g . O t t a w a , O n t a r i o : M i n i s t e r o f S u p p l y and S e r v i c e s . S t a t i s t i c s C a n a d a . ( 1 9 8 3 ) . F a c t book on a g i n g i n  C a n a d a . O t t a w a , O n t a r i o : M i n i s t e r o f S u p p l y and S e r v i c e s . S t a t i s t i c s C a n a d a . ( 1 9 8 4 ) . The e l d e r l y i n C a n a d a . O t t a w a , O n t a r i o : M i n i s t e r o f S u p p l y and S e r v i c e s . S t e r n , P. N. ( 1 9 8 5 ) . U s i n g g r o u n d e d t h e o r y m e t h o d i n n u r s i n q r e s e a r c h . In M. M. L e i n i n g e r ( E d . ) , Q u a l i t a t i v e r e s e a r c h m e t h o d s i n n u r s i n g ( p p . 149-160 ) . O r l a n d o , F L : G r u n e & S t r a t t o n . S t e u e r , J . L . , & C l a r k , E . 0. ( 1 9 8 2 ) . F a m i l y s u p p o r t g r o u p s w i t h i n a r e s e a r c h p r o j e c t on d e m e n t i a . C l i n i c a l G e r o n t o l o g i s t , _1, 8 7 - 9 1 . S t r o w , C , & M a c k r e t h , R. ( 1 9 7 7 ) . F a m i l y g r o u p m e e t i n g s : S t r e n g t h e n i n g a p a r t n e r s h i p . J o u r n a l o f  G e r o n t o l o g i c a l N u r s i n g , 2> 30-35 . S w a n s o n , J . M., & C h e n i t z , W. C. ( 1 9 8 2 ) . Why q u a l i t a t i v e r e s e a r c h i n n u r s i n g ? N u r s i n g O u t l o o k , 30, 2 4 1 - 2 4 5 . T o b i n , S. S., & L i e b e r m a n , M. A. ( 1 9 7 6 ) . L a s t home f o r  t h e a g e d . San F r a n c i s c o : J o s e y - B a s s . T o w n s e n d , P. ( 1 9 7 3 ) . I s o l a t i o n and l o n e l i n e s s i n t h e a g e d . In R. S. W e i s s , L o n e l i n e s s : The e x p e r i e n c e o f  s o c i a l and e m o t i o n a l i s o l a t i o n ( p p . 175-188 ) . C a m b r i d g e , MA: MIT P r e s s . T r a u p m a n n , J . , & H a t f i e l d , E . ( 1 9 8 1 ) . L o v e and i t s e f f e c t on m e n t a l and p h y s i c a l h e a l t h . In R. W. F o g e l E. H a t f i e l d , S. B. K i e s l e r , & E. S h a n a s ( E d s . ) . A g i n g : S t a b i l i t y and c h a n g e i n t h e f a m i l y ( p p . 253-274 ) . New Y o r k : A c a d e m i c P r e s s . T r o l l , L . ( 1 9 8 2 ) . C o n t i n u a t i o n s : A d u l t d e v e l o p m e n t and  a g i n g . M o n t e r e y , CA: B r o o k s / C o l e . UBC S c h o o l o f N u r s i n g . ( 1 9 8 0 ) . UBC Model f o r N u r s i n g . V a n c o u v e r , B r i t i s h C o l u m b i a : U n i v e r s i t y o f B r i t i s h C o l u m b i a . W e i s s , R. S. ( 1 9 7 3 ) . L o n e l i n e s s : The e x p e r i e n c e o f  s o c i a l and e m o t i o n a l i s o l a t i o n ! C a m b r i d g e , MA: MIT P r e s s . W e i s s , R. S. ( 1 9 7 9 ) . The e m o t i o n a l i m p a c t o f m a r i t a l s e p a r a t i o n . In G. L e v i n g e r & 0. C. M o l e s ( E d s . ) , D i v o r c e and s e p a r a t i o n ( p p . 2 0 1 - 2 1 0 ) . New Y o r k : B a s i c B o o k s . Wenger, C. ( 1 9 8 3 ) . L o n e l i n e s s : A p r o b l e m o f m e a s u r e m e n t In D. J e r o m e ( E d . ) , A g i n g i n modern s o c i e t y ( p p . 145-167 ) . New Y o r k : S t . M a r t i n ' s P r e s s . Y o r k , J . L . , & C a l s y n , R. J . ( 1 9 7 7 ) . F a m i l y i n v o l v e m e n t i n n u r s i n g homes. G e r o n t o l o g i s t , 17 , 500-505 . Y o u n g , J . E . ( 1 9 8 2 ) . L o n e l i n e s s , d e p r e s s i o n , and c o g n i t i v e t h e r a p y : T h e o r y and a p p l i c a t i o n . In L. A. P e p l a u & D. P e r l m a n ( E d s . ) , L o n e l i n e s s ( p p . 3 7 9 - 4 0 5 ) . New Y o r k : J o h n W i l e y & S o n s . Z a r i t , S. H., R e e v e r , K. E . , & B a c h - P e t e r s o n , J . ( 1 9 8 0 ) . R e l a t i v e s o f t h e i m p a i r e d e l d e r l y : C o r r e l a t e s o f f e e l i n g s o f b u r d e n . G e r o n t o l o g i s t , 20, 649-655 . 126 A p p e n d i x A S u b s y s t e m s , N e e d s , and G o a l s S u b s y s t e m Ac h i e v i ng A f f e c t i ve E g o - v a l u a t i v e E x c r e t o r y I n g e s t i ve P r o t e c t i ve R e p a r a t i ve R e s p i r a t o r y S a t i a t i ve Need F o r m a s t e r y F o r l o v e , b e l o n g i n g n e s s , and d e p e n d e n c e F o r r e s p e c t o f s e l f by s e l f and o t h e r s F o r c o l l e c t i o n and r e m o v a l o f a c c u m u l a t e d w a s t e s F o r i n t a k e o f f o o d and f l u i d ; n o u r i s h m e n t F o r s a f e t y and s e c u r i t y F o r b a l a n c e b e t w e e n p r o d u c t i o n and u t i l i z a t i o n o f e n e r g y F o r i n t a k e o f o x y g e n F o r s t i m u l a t i o n o f t h e s y s t e m ' s s e n s e s G o a l F e e l i n g s o f a c c o m p l i s h m e n t; s a t i s f a c t i o n w i t h a c c o m p l i s h m e n t s F e e l i n g s o f l o v e , b e l o n g i n g n e s s , and d e p e n d e n c e S e l f - e s t e e m A b s e n c e o f a c c u m u l a t e d w a s t e s N o u r i s h m e n t ; s a t i s f a c t i o n o f h u n g e r and t h i r s t I n t e g r i t y o f t h e s y s t e m C a p a c i t y f o r a c t i v i t y O x y g e n a t i o n ; e a s y r e s p i r a t i ons S e n s o r y s a t i s f a c t i on 127 A p p e n d i x B I n f o r m a t i o n L e t t e r My name i s K a t h l e e n Nunn. I am a M a s t e r o f S c i e n c e i n N u r s i n g s t u d e n t a t t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a . I am i n t e r e s t e d i n l e a r n i n g more a b o u t what c h a n g e s h a v e o c c u r r e d i n y o u r l i f e b e c a u s e o f t h e p l a c e m e n t o f y o u r h u s b a n d o r w i f e i n t h e ECU and how y o u h a v e c o p e d w i t h t h e s e c h a n g e s . I b e l i e v e y o u r d e s c r i p t i o n o f y o u r e x p e r i e n c e w i l l h e l p n u r s e s u n d e r s t a n d more a b o u t how p l a c e m e n t o f a h u s b a n d o r w i f e i n an ECU a f f e c t s t h e l i v e s o f p e o p l e l i k e y o u . I a l s o b e l i e v e t h a t t h i s i n f o r m a t i o n w i l l h e l p n u r s e s work i n p a r t n e r s h i p w i t h s p o u s e s o f ECU r e s i d e n t s i n o r d e r t o p e r s o n a l i z e t h e n u r s i n g c a r e p r o v i d e d . I am i n t e r e s t e d i n t a l k i n g w i t h p e o p l e whose h u s b a n d s o r w i v e s h a v e r e s i d e d i n t h e ECU f o r a t l e a s t s i x m o n t h s . I w o u l d l i k e t o i n t e r v i e w y o u i n y o u r home, o r w h e r e v e r y o u w o u l d f e e l m o s t c o m f o r t a b l e , t w i c e f o r a b o u t one and o n e - h a l f h o u r s e a c h t i m e . The i n t e r v i e w s w i l l be a r r a n g e d a t t i m e s c o n v e n i e n t t o y o u . T h e s e i n t e r v i e w s w i l l be t a p e r e c o r d e d b u t w i l l h a v e any i n f o r m a t i o n r e m o v e d f r o m them t h a t m i g h t i d e n t i f y y o u . T h u s , t h e i n t e r v i e w s w i l l r e m a i n anonymous and c o n f i d e n t i a l . The t a p e s w i l l be e r a s e d o n c e I ha v e f i n i s h e d a n a l y z i n g and i n t e r p r e t i n g t h e i n t e r v i e w s . The r e s u l t s o f t h i s s t u d y w i l l f o r m t h e b a s i s o f my M a s t e r ' s t h e s i s and may be p u b l i s h e d . I t w i l l n o t c o n t a i n any i n f o r m a t i o n t h a t i d e n t i f i e s y o u . Y o u r d e c i s i o n t o p a r t i c i p a t e i n t h i s s t u d y w i l l i n no way a f f e c t y o u r s p o u s e ' s c a r e i n t h e ECU. The s t a f f o f t h e ECU w i l l n o t be t o l d w h e t h e r o r n o t y o u p a r t i c i p a t e d . You s h o u l d a l s o u n d e r s t a n d t h a t y o u w i l l be f r e e t o w i t h d r a w f r o m t h e s t u d y a t any t i m e o r t o t e r m i n a t e t h e i n t e r v i e w . 128 I f y o u a r e i n t e r e s t e d i n p a r t i c i p a t i n g , p l e a s e w r i t e y o u r name, a d d r e s s , and t e l e p h o n e number i n t h e s p a c e b e l o w . T h e n d r o p t h i s l e t t e r i n t o t h e box m a r k e d "KN" on t h e f l o o r ' s b u l l e t i n b o a r d . I w i l l phone y o u and a r r a n g e t o meet w i t h y o u a t a t i m e c o n v e n i e n t t o y o u . In t h i s i n t e r v i e w , I w i l l a n s w e r any q u e s t i o n s y o u h a v e and w i l l a s k f o r y o u r w r i t t e n c o n s e n t . T h a n k y o u f o r y o u r i n t e r e s t . Y o u r s t r u l y , K a t h l e e n N u n n , R.N. Name: A d d r e s s : T e l e p h o n e Number: 129 A p p e n d i x C C o n s e n t Form S t u d y T i t l e : C o p i n g W i t h H a v i n g a S p o u s e i n an E x t e n d e d C a r e U n i t : A D e s c r i p t i v e S t u d y I h a v e r e a d t h e i n f o r m a t i o n l e t t e r a b o u t t h i s s t u d y and u n d e r s t a n d i t s n a t u r e . I a l s o u n d e r s t a n d t h a t I may w i t h d r a w f r o m t h e s t u d y a t any t i m e , and t h a t t h e c a r e g i v e n t o my s p o u s e i n t h e E x t e n d e d C a r e U n i t w i t l l n o t be a f f e c t e d by my wi t h d r a w a l . I g i v e my c o n s e n t t o p a r t i c i p a t e . D a t e : S i g n a t u r e : [ | I f y o u w i s h t o r e c e i v e a b r i e f summary o f t h e s t u d y a f t e r i t i s c o m p l e t e d , p l e a s e c h e c k t h e b o x . 130 A p p e n d i x D G u i d e t o D a t a C o l l e c t i o n 1. D e m o g r a p h i c d a t a ( a ) p a r t i c i p a n t ' s a g e , ( b ) p a r t i c i p a n t ' s g e n e r a l h e a l t h s t a t u s , ( c ) age o f s p o u s e i n ECU, ( d ) y e a r s m a r r i e d , ( e ) l e n g t h o f t i m e s p o u s e has r e s i d e d i n ECU. 2. I n f o r m a t i o n r e g a r d i n g n e e d s a t i s f a c t i o n Need F o r m a s t e r y F o r l o v e , b e ! o n g i n g n e s s , and d e p e n d e n c e F o r r e s p e c t o f s e l f by s e l f and o t h e r s F o r s a f e t y and s e c u r i t y F o r i n t a k e o f f o o d and f l u i d ; n o u r i s h m e n t F o r b a l a n c e b e t w e e n p r o d u c t i o n and u t i l i z a t i o n o f e n e r g y F o r s t i m u l a t i o n o f t h e s e n s e s F o r c o l l e c t i o n and r e m o v a l o f a c c u m u l a t e d w a s t e s A r e a s o f I n q u i r y a c c o m p l i s h m e n t s and a c t i v i t i e s , e . g . , h o b b i e s , e m p l o y m e n t , and r e c r e a t i o n r e l a t i o n s h i p s w i t h f a m i l y , f r i e n d s , n e i g h b o u r s , m e m b e r s h i p i n g r o u p s -f r e q u e n c y and q u a l i t y o f c o n t a c t , r e l a t i o n s h i p w i t h s p o u s e - - f r e q u e n c y and q u a l i t y o f c o n t a c t p e r s o n a l g r o o m i n g ; f e e l i n g s a b o u t s e l f f i n a n c e s ; l i v i n g a r r a n g e m e n t s ; a b i l i t y t o c a r e f o r s e l f and home; t r a n s p o r t a t i o n w e i g h t l o s s o r g a i n ; g r o c e r y s h o p p i n g ; meal p e p a r a t i o n ; e a t i n g p a t t e r n s ; a p p e t i t e s l e e p i n g p a t t e r n s ; f e e l i n g o f r e s t e d n e s s ; d a i l y r o u t i n e ; t o l e r a n c e o f a c t i v i t y p l e a s u r a b l e a c t i v i t i e s , e . g . m u s i c , g o i n g f o r w a l k s , e t c . bowel p a t t e r n s , e . g . , d i a r r h e a ; p e r s p i r a t i o n r e a d i ng, c o n s t i p a t i o n o r 131 F o r i n t a k e o f b r e a t h i n g p a t t e r n s , e . g . , e p i s o d e s o f o x y g e n s h o r t n e s s o f b r e a t h 

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