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Bereavement : the experience and coping skills of elderly spouses of deceased extended care unit residents St-Martin, Lorraine 1991

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BEREAVEMENT: THE EXPERIENCE AND COPING SKILLS OF ELDERLY SPOUSES OF DECEASED EXTENDED CARE UNIT RESIDENTS by LORRAINE ST - MARTIN B.S.W., M c G i l l U n i v e r s i t y , 1977 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES (The School of S o c i a l Work) We accept t h i s t h e s i s as conforming t o the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA August, 1991 L o r r a i n e St - M a r t i n , 1991 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of fajj/j {AfA The University of British Columbia Vancouver, Canada Date DE-6 (2/88) ABSTRACT There i s l i t t l e r e s e a r c h on the bereavement experience of e l d e r l y spouses, and the e f f e c t s of l o n g -term c a r e g i v i n g on bereavement. T h i s study addresses the experience of bereavement of e l d e r l y spouses of Extended Care Unit r e s i d e n t s ; the coping s k i l l s they employ in the e a r l y months of bereavement; and the connections between coping and s o c i a l supports. Interviews were held with 8 e l d e r l y male and female bereaved spouses between the ages of 70 and 85. The bereaved respondents were i d e n t i f i e d by the S o c i a l Work Department at s e v e r a l l o c a l Extended Care U n i t s . A l l respondents were known to the s o c i a l workers who contacted them t o request p a r t i c i p a t i o n i n the study. U t i l i z i n g a grounded theory approach and q u a l i t a t i v e methods, e x p l o r a t o r y i n t e r v i e w s were c a r r i e d out i n person with respondents. Recorded responses were t r a n s c r i b e d and analysed. Content a n a l y s i s was used to determine emergent themes and c a t e g o r i e s from the data. The respondents experienced a n t i c i p a t o r y g r i e f i i i w h ile t h e i r spouses were at the Extended Care U n i t . They r e l i e d on t h e i r r e l i g i o u s b e l i e f s , p r e v i o u s a c t i v i t i e s and s o c i a l supports during the bereavement per i o d . The respondents d e s i r e d t o keep t h e i r spouses at home. Increased home s e r v i c e s would have allowed them to do so. Bereavement follow-up and support are needed by t h i s age group. I n t e r v e n t i o n appears t o be as important b e f o r e bereavement as i t i s afterwards. i v TABLE OF CONTENTS ABSTRACT i i LIST OF TABLES v i i INTRODUCTION 1 The Study 2 CHAPTER ONE: BACKGROUND 4 The E l d e r l y Couple and Bereavement 4 The E l d e r l y as Consumers of Health S e r v i c e s 8 Background t o the Extended Care Unit 13 Family as the Unit of Care i n Terminal I l l n e s s 17 Loss in the Medical S e t t i n g 20 CHAPTER TWO: THEORETICAL FRAMEWORK 23 Loss as Ex p l a i n e d by The o r i e s of Aging 23 Bereavement - The G r i e f Process 34 The o r i e s of Bereavement a p p l i e d to the E l d e r l y 39 F a c t o r s A f f e c t i n g the G r i e f Process 41 C a r e g i v i n g Issues 41 A n t i c i p a t o r y G r i e f 45 Coping 47 S o c i a l Support 52 CHAPTER THREE: METHODOLOGY 62 Research Design 62 Study P o p u l a t i o n and S e l e c t i o n 65 Data C o l l e c t i o n 73 Data A n a l y s i s 75 CHAPTER FOUR: FINDINGS 78 C a r e g i v i n g Issues 79 C a r e g i v i n g at Home 79 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 83 F a c i l i t y C a r e g i v i n g 86 Summary of C a r e g i v i n g Issues 89 A n t i c i p a t o r y G r i e f Issues 96 R e l a t i o n s h i p Issues 97 P r e p a r a t i o n for Death 99 Summary of A n t i c i p a t o r y G r i e f 102 The G r i e f Process 105 The Need t o Say Goodbye 105 Avoidance 107 Sep a r a t i o n and Longing 108 C h a r a c t e r i s t i c s of the R e l a t i o n s h i p 109 Thoughts and F e e l i n g s s i n c e the Death 110 L o n e l i n e s s 113 P h y s i c a l Symptoms 114 S e r v i c e s / R i t u a l s 115 Summary of The G r i e f Process Coping B e l i e f s Act i v i t y Summary of Coping S o c i a l Support Systems Fami1y Fr iends P r o f e s s i o n a l s Bereavement C o u n s e l l i n g Summary of S o c i a l Supports L i m i t a t i o n s of the Study Summary of Age Related F i n d i n g s Summary of Gender Related F i n d i n g s Cone 1usions Pol i c y Issues P r a c t i c e Issues Future Research Ideas References Appendix "A" Appendix "B" Appendix "C" LIST OF TABLES Table 1: R e f e r r a l and P a r t i c i p a t i o n of Respondents Table 2: Age and Gender of Respondents Table 3: Length and Type of I l l n e s s of the Deceased, Length of Stay at the Extended Care Unit , and Length of Bereavement of Respondent Table 4: Demographics of Respondents v i i i ACKNOWLEDGEMENTS I am g r a t e f u l t o the e l d e r l y women and men who were open and generous in t e l l i n g me about t h e i r moments of v u l n e r a b i l i t y during bereavement. I am a l s o g r a t e f u l t o the s o c i a l workers who introduced me to the bereaved and who taught me about l i f e i n the Extended Care U n i t . I wish to thank Paule M c N i c o l l for her guidance, support and a s s i s t a n c e with my work. I am a l s o t h a n k f u l for the encouragement that E l i z a b e t h Robinson gave me throughout the study. And f i n a l l y , I am deeply a p p r e c i a t i v e of my f r i e n d s who helped me in many ways. I p a r t i c u l a r l y want t o thank Mae and Donald who were c a r i n g and i n t e r e s t e d every step of the way; Judy and Isaac who encouraged me i n a very s p e c i a l way; and Maureen who 1iste n e d . 1 INTRODUCTION We must a l l deal with the i n e v i t a b i l i t y of death. For some, death f i r s t becomes a r e a l i t y through the l o s s of a parent or grandparent. For o t h e r s , the f i r s t d e a l i n g with death may be to witness someone e l s e g r i e v i n g f o r a loved one. As a s o c i a l work student at an Extended Care U n i t , I met many r e s i d e n t s and f a m i l y members who were g r i e v i n g . I was deeply touched by a small group of e l d e r l y i n d i v i d u a l s who were a n t i c i p a t i n g the l o s s of t h e i r spouse due t o a t e r m i n a l i l l n e s s . I began t o wonder how t h e i r needs c o u l d be met d u r i n g t h e i r bereavement process. Having watched t h e i r s t r e n g t h i n c a r i n g f o r t h e i r spouses, I knew that my i n q u i r y should be d i r e c t e d toward them. My t h e s i s c o n s i d e r s the many f a c t o r s which may i n f l u e n c e the bereavement process for these e l d e r l y spouses: age', the e f f e c t s of i n s t i t u t i o n a l i z a t i o n and l o n g -term i l l n e s s on f a m i l y members, coping s k i l l s , formal and informal support systems and thoughts and f e e l i n g s about death and g r i e v i n g . The Study The study focuses on the experience of spouses in the Extended Care Unit: their preparedness for their spouse's death, th e i r b e l i e f s about death, th e i r personal coping s t y l e , their s o c i a l support network, and their perception about the ongoing need of formal support programs. The objectives of the study were to I) further our knowledge base about e l d e r l y bereavement after a period of long-term caregiving, 2) to determine from the e l d e r l y which aspects of the experience were important before and after the death, and 3) to determine what ro l e the Extended Care Unit and s p e c i f i c a l l y the Social Work Department might play i n bereavement - fo11ow-up. In Chapter 1, I provide background information about: the e l d e r l y as consumers of health services, the Extended Care Unit, the family as the unit of care in terminal i l l n e s s , and the loss experience in the medical setting. In Chapter 2, I describe the relevant theoretical knowledge on aging. Theories of aging w i l l be examined to see how loss through death in the elde r l y i s explained. Bereavement studies and theories w i l l be reviewed to determine i f the experience of the el d e r l y spouse can be compared to any of these viewpoints. Variables that are of importance in the grieving process such as caregiving i s s u e s , a n t i c i p a t o r y g r i e f , c o p i n g p r o c e s s e s and s o c i a l suppor t w i l l be d i s c u s s e d from a t h e o r e t i c a l p e r s p e c t i v e . In Chapter 3 , I o u t l i n e the methodology used in the s t u d y . The r e s e a r c h d e s i g n , s tudy p o p u l a t i o n and s e l e c t i o n , d a t a c o l l e c t i o n and d a t a a n a l y s i s a r e d e s c r i b e d in d e t a i l . In Chapter 4 , the f i n d i n g s from the i n t e r v i e w s a r e c o l l e c t e d i n t o themes that a r e suppor ted wi th e x c e r p t s from the i n t e r v i e w s wi th the bereaved r e s p o n d e n t s . The d a t a i s o r g a n i z e d i n t o major c a t e g o r i e s wi th s u b - c a t e g o r i e s for each s e c t i o n . I i n t e r p r e t and d i s c u s s the f i n d i n g s at the end of the c h a p t e r . In Chapter 5, I c o n c l u d e the s tudy wi th i m p l i c a t i o n s for p o l i c y , p r a c t i c e and t h e o r y . The l i m i t a t i o n s and s t r e n g t h s of my s tudy w i l l be d i s c u s s e d in d e t a i l . CHAPTER ONE: BACKGROUND 4 The E l d e r l y Couple and Bereavement Hooyman and Kiyak (1988) suggest that a t t i t u d e s toward death d i f f e r with age, that the e l d e r l y a n t i c i p a t e death more and t h e r e f o r e may accept i t more p a s s i v e l y . Proponents of t h i s theory suggest death at an o l d e r age i s viewed as a n a t u r a l process; s t r e s s i s reduced the f a r t h e r along the i n d i v i d u a l i s i n the l i f e c y c l e ( C a r t e r and McGoldrick, 1989). Death, viewed through a f a m i l y systems' p e r s p e c t i v e , i s a process i n which the dying i n d i v i d u a l i s j u s t one of those a f f e c t e d by the l o s s ( C a r t e r and McGoldrick, 1989). Death of an e l d e r l y person may be the f i r s t death a g r a n d c h i l d ever experiences of someone c l o s e t o him. The r e l a t i o n s h i p t o the deceased w i l l i n f l u e n c e the impact of death on the bereaved ( C a r t e r and McGoldrick, 1989; Rando, 1988). The l i t e r a t u r e shows that the m a r i t a l r e l a t i o n s h i p of e l d e r l y couples tends t o become a g r e a t e r s a t i s f a c t i o n i n l a t e r years (Abu-Laban, 1978). Abu-Laban says that because death can s t r i k e at any moment, time becomes more p r e c i o u s . She a l s o suggests that communication problems have been worked out over the years. T h i s view of the o l d e r couple does not take i n t o account the c u l t u r a l , r e l i g i o u s or economic f a c t o r s that determine the d e c i s i o n t o s t a y together i n a m a r i t a l dyad. It i s important not t o g e n e r a l i z e t h i s p e r s p e c t i v e t o a l l e l d e r l y c o u p les and assume that because p a r t n e r s remain together they are e x p e r i e n c i n g g r e a t e r s a t i s f a c t i o n than they d i d when they were younger. R e l a t i o n s h i p s at any age i n v o l v e a complex s e r i e s of i n t e r a c t i o n s of needs, r o l e s , d e s i r e s and expectat i o n s . What we do know about o l d e r couples i s that they may have l i v e d together for many years, married r e c e n t l y a f t e r one of the p a r t n e r ' s d i v o r c e or bereavement, or married l a t e in l i f e a f t e r both being s i n g l e . Older couples may have had a r e l a t i o n s h i p based on the r o l e s of husband as d e c i s i o n -maker and wife as mother and homemaker (Blood, I960). The change i n the r o l e s of d a i l y l i v i n g as a r e s u l t of a terminal i l l n e s s and death of a spouse for these couples may have some impact on t h e i r coping a b i l i t i e s . Older men may f i n d the t r a n s i t i o n from wage earner t o one who i s r e s p o n s i b l e f o r household chores d i f f i c u l t i n the advent of a w i f e ' s t e r m i n a l i l l n e s s . Older women may e q u a l l y have d i f f i c u l t i e s with the in c r e a s e d r e s p o n s i b i l i t y of f i n a n c e s which t h e i r spouse p r e v i o u s l y arranged. Taking c a r e of a spouse who i s h o s p i t a l i z e d can be s t r e s s f u l , as well as e m o t i o n a l l y and p h y s i c a l l y d r a i n i n g . The demands of p r o v i d i n g d a i l y personal a s s i s t a n c e such as feeding or v i s i t i n g a spouse can lead t o f e e l i n g s of i s o l a t i o n , l o n e l i n e s s and a sense of not having time for o n e s e l f (Hooyman and Kiyak, 1988). E l d e r l y people who are s u r v i v i n g the death of t h e i r spouse a f t e r a t e r m i n a l i l l n e s s and death at an Extended Care Unit are coping with a s e r i e s of complex and d i f f i c u l t circumstances* They have gone through the s t r e s s of i n s t i t u t i o n a l i z i n g t h e i r spouse a f t e r g i v i n g c a r e at home for some p e r i o d of time. Family members commonly attempt to p r o v i d e c a r e a t h o m e b e f o r e seeking r e l i e f from i n -st i t u t i o n a l i z a t ion (Hooyman and Kiyak, 1988). They have-been deal ing with increased dependency and the t e r m i n a l i l l n e s s of t h e i r spouse. They have l o s t a spouse which i s commonly known t o be one of the most s t r e s s f u l l i f e events (Sanders, 1985). They themselves are e l d e r l y and may be coping with t h e i r own aging, p h y s i c a l i l l n e s s or a f i n a n c i a l burden. The general h e a l t h r i s k s of bereavement are p h y s i c a l and emotional. The widowed c o n s u l t d o c t o r s more o f t e n , take more medication and have g e n e r a l l y higher symptom r a t e s than the non-widowed (Bowling, 1988). The emotional d i s t r e s s 7 f o l l o w i n g bereavement i s s i m i l a r in nature and i n t e n s i t y to c l i n i c a l d e p r e s s i o n and can i n c l u d e c r y i n g , sorrow, a n x i e t y , a g i t a t i o n , and a lack of i n t e r e s t in t h i n g s and food (Osterweis, 1984). There are c o n t r a d i c t o r y s t u d i e s about the i n c r e a s e d h e a l t h r i s k by age group for the newly bereaved. Everyone knows of someone who died w i t h i n a year of her spouse's death. The frequency of t h i s occurrence c o n t i n u e s to be the subject of disagreement and ongoing r e s e a r c h . White males under 45 years of age and males over 70 years appear to be most at r i s k f o r i n c r e a s e d m o r t a l i t y i n the f i r s t year f o l l o w i n g bereavement ( G l i c k , Weiss and Parkes, 1974; Bowling, 1988). C a r t e r and McGoldrick (1989) a t t r i b u t e the i n c r e a s e in death and s u i c i d e for widowers in the f i r s t year to the sense of l o s s , d i s o r i e n t a t i o n and l o n e l i n e s s experienced. Osterweis, Solomon & M o r r i s (1984) a l s o found widows and widowers younger than 45 years t o be at the highest r i s k for death from v a s c u l a r l e s i o n s of the c e n t r a l nervous system, a r t e r i o s c l e r o t i c heart d i s e a s e , non-rheumatic c h r o n i c e n d o c a r d i t i s and other myocardial degener-a t i o n , h ypertension with heart d i s e a s e , t u b e r c u l o s i s , i n -f l u e n z a and pneumonia. However, they r e f u t e the f i n d i n g s of increased m o r t a l i t y i n widowers 75 years and over and suggests that in f a c t o l d e r widowed men who s u r v i v e t h e i r 8 spouses may be i n b e t t e r h e a l t h than married men of the same age; widowers over 75 years would a l r e a d y have surpassed the 1i fe expectancy r a t e for men (Osterweis, Solomon & M o r r i s , 1984). F a c t o r s such as l e n g t h of i l l n e s s of deceased spouse, p r e - e x i s t i n g i l l n e s s i n the s u r v i v o r , socioeconomic and e t h n i c s t a t u s have not been adequately accounted for i n the r e s e a r c h (Hooyman and Kiyak, 1988). Medical s o c i a l workers may be r e q u i r e d t o a s s i s t the e l d e r l y with emotional or p h y s i c a l concerns d u r i n g the g r i e f p r ocess b e f o r e bereavement or a f t e r the death of t h e i r spouse. The extent of a s s i s t a n c e r e q u i r e d w i l l be determined by the number of e l d e r l y i n v o l v e d i n the h e a l t h c a r e system. Because the l e n g t h of i l l n e s s of the deceased and the s t a t e of h e a l t h of the s u r v i v o r are c o n s i d e r e d to be f a c t o r s that a f f e c t bereavement, i t i s important t o review the l i t e r a t u r e on the r e l a t i o n s h i p between Canadian e l d e r l y and h e a l t h s e r v i c e s . The E l d e r l y as Consumers of H e a l t h S e r v i c e s Demographics i n d i c a t e the p o p u l a t i o n i s aging worldwide. The r e s u l t s of s o c i a l , economic, n u t r i t i o n a l and medical p r o g r e s s are a l s o p a r t i a l l y r e s p o n s i b l e for the change i n age s t r u c t u r e i n s o c i e t y . Family p l a n n i n g has r e s u l t e d i n an o v e r a l l slowing i n the growth of the world p o p u l a t i o n ( B u t l e r , 1985). There have been unprecedented r e d u c t i o n s i n m a t e r n a l , c h i l d h o o d , and i n f a n t m o r t a l i t y r a t e s i n the l a s t century. C u r r e n t l y i n the United S t a t e s , 8 out of 10 newborn i n f a n t s w i l l lead a f u l l l i f e whereas 150 years ago o n l y 3 i n f a n t s would have s u r v i v e d t o o l d age ( B u t l e r , 1985; S t a t i s t i c s Canada, 1988). The d e c l i n e i n a g e - s p e c i f i c death r a t e s has r e s u l t e d i n improvements i n l o n g e v i t y f o r Canadians as w e l l . P r e l i m i n a r y l i f e t a b l e s (one i n d i c a t o r of the p o p u l a t i o n ' s o v e r a l l h e a l t h s t a t u s ) for the 1983-1985 p e r i o d i n d i c a t e l i f e expectancy f o r men i s 72.9 years and 79.8 years f o r women ( S t a t i s t i c s Canada, 1988). 307. of a l l deaths now occur over the age of SO. According t o the United Nations, between now and the year 2000 t h e r e w i l l be a d o u b l i n g of the number of people over 60 i n the world ( B u t l e r , 1985). In Canada, i n the year 2001, S t a t i s t i c s Canada (1988) est i m a t e s that approximately 127. of our p o p u l a t i o n w i l l be over 65. The a n t i c i p a t e d change in demographics of the e l d e r l y p o p u l a t i o n f u e l s d i s c u s s i o n s about our a b i l i t y as a s o c i e t y t o p r o v i d e adequate h e a l t h s e r v i c e s i n the f u t u r e . We t a l k about a c r i s i s of spending i n h e a l t h care as well as e t h i c a l i s s u e s about who should r e c e i v e medical treatments, what types of treatment and i n what s i t u a t i o n s (MacStravic, 1 9 7 8 ) . I n d i v i d u a l s and c a r e g i v e r s d i s c u s s what r i g h t s and r e s p o n s i b i l i t i e s the e l d e r l y have i n the medical treatment of t h e i r c o n d i t i o n s or i l l n e s s e s . We ask o u r s e l v e s whether t h e r e w i l l be as many c h o i c e s for s u r g i c a l , and s p e c i a l i z e d s e r v i c e s t o the e l d e r l y i n f u t u r e . These e t h i c a l q u e s t i o n s are based on the c o n n e c t i o n between aging, h e a l t h and the use of medical s e r v i c e s . Despite-assumptions that i l l h e a l t h i s i n e v i t a b l e i n o l d age, t h e - m a j o r i t y of e l d e r l y Canadians enjoy good h e a l t h well i n t o t h e i r l a t e r years. Less than 20% of o l d e r people are estimated to have a m i l d degree of d i s a b i l i t y i n t h e i r d a i l y a c t i v i t i e s (Hooyman and Kiyak, 1988; A t c h l e y , 1972). Only 47. are s e v e r e l y d i s a b l e d , l i m i t i n g t h e i r a b i l i t y t o eat, bathe and d r e s s . An American N a t i o n a l Survey i n 1982 i n d i c a t e d that 657. of e l d e r l y people in the community d e s c r i b e d t h e i r h e a l t h as e x c e l l e n t , very good or good (Hooyman and Kiyak, 1988). A number of f a c t o r s r e l a t e d to s o c i a l s t r u c t u r e were found t o be c o r r e l a t e d t o p o s i t i v e outcome i n c l u d i n g s o c i a l c l a s s and e t h n i c group. Beck (1973) proposes that s o c i a l c l a s s p l a y s a r e l e v a n t r o l e i n a c c e s s i b i l i t y t o medical s e r v i c e s even in Canada's system of u n i v e r s a l access. Beck (1973) suggests that i t i s a complex r e l a t i o n s h i p i n v o l v i n g more than the mere presence of purchasing power t o a c q u i r e s e r v i c e s . Mediating f a c t o r s i n c l u d e c u l t u r a l b e l i e f s , i n t e r p e r s o n a l i n f l u e n c e s , l a y r e f e r r a l p a t t e r n s , v a r i a t i o n s i n the p h y s i c i a n - p a t i e n t r e l a t i o n s h i p among socioeconomic c l a s s e s and d i s c o n t e n t with the system of medical c a r e (Beck, 1973). Per c a p i t a , the i l l e l d e r l y , who are aged 65 and over, use h o s p i t a l s e r v i c e s about t h r e e times as much as the whole p o p u l a t i o n . They use p h y s i c i a n and p r e s c r i p t i o n s e r v i c e s twice as o f t e n as t h e i r numerical s i z e would lead us t o expect. Those aged 85 and o l d e r are 4 t o 6 times more l i k e l y t o be d i s a b l e d and t o r e q u i r e a s s i s t a n c e than those aged 65 to 74 (Hooyman and Kiyak, 1988). Old age i s c h a r a c t e r i s t i c a l l y c o n s i d e r e d t o be a s s o c i a t e d with a g r e a t e r p r e v a l e n c e and s e v e r i t y of d i s e a s e . I l l n e s s i n the e l d e r l y i s a l s o more prolonged. However, the e l d e r l y a re not a homogenous group. The i n c r e a s e i n the use of h e a l t h s e r v i c e s i s due t o a small percentage of the e l d e r l y . Too f r e q u e n t l y p h y s i c i a n s d e s c r i b e a c o n d i t i o n t o " o l d age" when a s p e c i f i c d i s e a s e e x i s t s (Rowe, 1984). A g e - r e l a t e d r e d u c t i o n s i n the f u n c t i o n of numerous organs p l a c e e l d e r l y i n d i v i d u a l s at s p e c i a l r i s k for enhanced m o r b i d i t y from d i s e a s e s i n those organs (Rowe, 1984). A new d i r e c t i o n i n g e r o n t o l o g i c a l medical r e s e a r c h i n d i c a t e s that d i s e a s e s that occur i n both young and o l d a d u l t s present themselves as d i f f e r e n t i n these two groups. I 12 With some d i s e a s e s such as b r e a s t carcinoma, t h e r e are recent f i n d i n g s that suggest t h e r e i s i n c r e a s e d a u t o - a n t i -i d i o t y p i c a n t i b o d y p r o d u c t i o n with age which may e x p l a i n why some e l d e r l y have a more f a v o r a b l e c l i n i c a l course than the younger person (Rowe, 1984). The p a t t e r n of i l l n e s s and d i s e a s e has changed i n the past 80 years with c h r o n i c c o n d i t i o n s r e p l a c i n g acute d i s -eases as a major h e a l t h r i s k f o r o l d e r people (Hooyman and Kiyak, 1988; S t a t i s t i c s Canada, 1988). Because of the advances of medical technology, the number of people who s u r v i v e i n f e c t i o u s d i s e a s e s and a c c i d e n t s and reach o l d age i s i n c r e a s i n g . The development of c h r o n i c d i s e a s e s such as c a r d i o v a s c u l a r d i s e a s e , cancer, d i s e a s e s of the r e s p i r a t o r y and c i r c u l a t o r y systems, a t h r i t i s , d i a b e t e s and d i s e a s e s of the bones are now the l e a d i n g i l l n e s s e s and causes of death i n the e l d e r l y ( S t a t i s t i c s Canada, 1988). Heart d i s e a s e , cancer and s t r o k e s account f o r 3/4 of a l l deaths among people 65 years and over ( S t a t i s t i c s Canada, 1988). More than 807. of people 65 years and over have at l e a s t one c h r o n i c c o n d i t i o n . However, on l y about 27. of those aged 65 are c o n f i n e d t o bed by t h e i r c h r o n i c c o n d i t i o n and most o l d e r people with a c h r o n i c c o n d i t i o n are not dependent on o t h e r s f o r managing t h e i r d a i l y r o u t i n e s (Hooyman and Kiyak, 1989; C a r t e r and McGoldrick, 1989; Baker, 1984). 13 The small percentage of those e l d e r l y who do need a s s i s t a n c e with c a r e have p l a c e d enormous p r e s s u r e s on formal h e a l t h s e r v i c e s as well as on informal c a r e g i v e r s . Older people are more l i k e l y t o be h o s p i t a l i z e d and s t a y longer once they are in the h o s p i t a l (Hooyman and Kiyak, 1988). Background t o the Extended Care H o s p i t a l For those with one or more c h r o n i c c o n d i t i o n s who do r e q u i r e a s s i s t a n c e , a v a r i e t y of s e r v i c e s are a v a i l a b l e . Community based and r e s i d e n t i a l s e r v i c e s are i n p l a c e for the d i s a b l e d e l d e r l y . Wellness C l i n i c s , Occupational T h e r a p i s t s , Homemaker S e r v i c e s , N u t r i t i o n Programs, Re c r e a t i o n Programs and Adult Day Care Centres are i n p l a c e to maintain the e l d e r l y ' s independence by s u p p o r t i n g them i n the community as long as p o s s i b l e . The growing demand for these s e r v i c e s has r e s u l t e d i n long w a i t i n g l i s t s for r e s i d e n t i a l s e r v i c e s and a change i n p r o v i s i o n of Homemaking s e r v i c e s . Consumer surveys c o n s i s t e n t l y show that o l d e r people p r e f e r home ca r e over h o s p i t a l s or n u r s i n g homes (Hooyman and Kiyak, 1989). They a l s o i n d i c a t e that p a t i e n t s recover f a s t e r from i l l n e s s and a c c i d e n t s at home. In B r i t i s h Columbia, under the M i n i s t r y of Health, the C o n t i n u i n g Care D i v i s i o n c o n s i s t s of the Long Term Care and D i r e c t Care (Home Nursing Care and Community Physiotherapy) Programs. Long Term Care i s designed t o a s s i s t a d u l t s with long-term, h e a l t h - r e l a t e d problems and s e r v i c e s are provided i n t he home, community or r e s i d e n t i a l s e t t i n g s such as Intermediate Care f a c i l i t i e s (B.C. Annual Report, 1989). Long Term Care c o n j u r e s up a lack of independence, and i n s t i t u t i o n s . A d e c i s i o n t o move t o a n u r s i n g home i s o f t e n made by e l d e r l y people themselves or by t h e i r f a m i l y . T h i s u s u a l l y takes p l a c e once a l l c a r e g i v i n g r e s o u r c e s i n the community and i n the f a m i l y have been exhausted. I n s t i t u t -i o n a l i z a t i o n i s commonly the most traumatic and d i f f i c u l t d e c i s i o n a f a m i l y must make when c a r i n g f o r t h e i r e l d e r l y parent or spouse (van Bommel, 1987). Extended Care U n i t s come under another j u r i s d i c t i o n of the M i n i s t r y of Health, the H o s p i t a l Programs D i v i s i o n . Extended Care U n i t s , sometimes c a l l e d Extended Care H o s p i t a l s , p r o v i d e the a d d i t i o n a l c a r e r e q u i r e d when a person's c o n d i t i o n d e t e r i o r a t e s . Family members may no longer be a b l e t o p r o v i d e c a r e at home, or the c a r e r e q u i r e d exceeds what can be pro v i d e d i n the fa m i l y home or i n a r e s i d e n t i a l s e t t i n g such as a n u r s i n g home. Des p i t e the ne g a t i v e views about n u r s i n g homes h e l d by f a m i l i e s and by the e l d e r l y , i n s t i t u t i o n a l i z a t i o n i s sometimes the onl y r e a l c h o i c e f o r those with low incomes and severe p h y s i c a l r e s t r i c t i o n s . It i s d i f f i c u l t t o f i n d i n d i v i d u a l s w i l l i n g t o p r o v i d e 24-hour c a r e and i t i s expensive t o purchase. In B r i t i s h Columbia, i n the p e r i o d from 1984/1985 to 1988/1989, the number of r e s i d e n t s l i v i n g i n Extended Care U n i t s rose from 5,075 t o 6,400 (B.C. Health Annual Report, 1989). The average length of stay i n 1989 was 388.5 days per p a t i e n t . Although one can f i n d a d u l t r e s i d e n t s of any age l i v i n g i n Extended Care U n i t s , the m a j o r i t y are e l d e r l y . The average age of the Extended Care Unit r e s i d e n t i s 82 years o l d . The r e s u l t s of i n s t i t u t i o n a l i z a t i o n are o f t e n d e p r e s s i o n , a withdrawal i n t o o n e s e l f and an ambivalence between wanting the a s s i s t a n c e of medical s t a f f and wanting to be home with one's f a m i l y and p o s s e s s i o n s . A c o m p l i c a t -ing f a c t o r f o r the Extended Care Unit r e s i d e n t and fami l y i s the dementia and mental impairment which accompanies many of the t e r m i n a l and c h r o n i c i l l n e s s e s . D e c i s i o n s f a l l t o famil y members when a person i s mentally impaired. T h i s can i n c r e a s e f e e l i n g s of g u i l t and c o n f u s i o n f o r a spouse who i s s t r u g g l i n g t o continue p r o v i d i n g care at home with i n c r e a s i n g p r e s s u r e from c h i l d r e n and p h y s i c i a n s t o i n s t i t -u t i o n a l i z e the i n d i v i d u a l . C a r e g i v e r s can f e e l g u i l t and r e l i e f . They f e e l r e l i e f from the e n d l e s s d u t i e s of l o o k i n g a f t e r t h e i r spouse's 16 needs; t h e i r burden i s now shared by p r o f e s s i o n a l s t a f f i n the i n s t i t u t i o n - . Coupled with t h i s r e l i e f i s the d i f f i c u l t y of s h a r i n g the r e s p o n s i b i l i t y f o r t h e i r i l l r e l a t i v e with p r o f e s s i o n a l s who may change home r o u t i n e s and q u e s t i o n what worked well for the c a r e g i v e r s f o r years. C a r e g i v e r s see t h e i r loved ones w a i t i n g f o r a s s i s t a n c e because t h e y must a l s o share the p r o f e s s i o n a l s ' time with other r e s i d e n t s . U n l i k e the Acute Care H o s p i t a l where f a m i l y members g e n e r a l l y see the ca r e as s p e c i a l i z e d , f a m i l y members at the Extended Care U n i t s sometimes f e e l the c a r e i s l e s s adequate than what they p r o v i d e d at home. C a r e g i v i n g by some spouses cont i n u e s i n the form of frequent v i s i t i n g and a s s i s t i n g with d a i l y r o u t i n e s such as feeding. C a r e g i v i n g can be a coping mechanism for many spouses; they see themselves as important monitors of care i n a system that i s o f t e n u n d e r s t a f f e d (Nunn, 1989). The p h i l o s o p h y of the Co n t i n u i n g Care D i v i s i o n i n p r o v i d i n g r e s i d e n t i a l s e r v i c e s t o the e l d e r l y i n the community i s t o emphasize the r o l e of fami l y i n c a r e and to pr o v i d e r e s o u r c e s where f a m i l y are unable t o cope ( M i n i s t r y of Health, 1989). T h i s p h i l o s o p h y does not always c a r r y over i n t o the Extended Care U n i t s , based i n the medical model and funded under H o s p i t a l Programs. In the Extended Care U n i t , r e s i d e n t s and fa m i l y members are sometimes 17 i n c l u d e d i n c a r e planning through case conferences. Family members more t y p i c a l l y become i n v o l v e d through s u b t l e n e g o t i a t i o n s with a v a r i e t y of s t a f f members about d a i l y r o u t i n e s and access t o other medical s e r v i c e s such as p h y s i -o t h e r a p i s t s and p h y s i c i a n s . F amily as the Unit o f Care i n Terminal I l l n e s s When a p a t i e n t i s admitted t o an Extended Care U n i t , two systems, the fa m i l y system and the medical system come i n t o contact (Mandelbaum, 1984). I n d i v i d u a l s i n these two systems may develop a smooth or c o n f l i c t u a l r e l a t i o n s h i p . A c o n f l i c t u a l r e l a t i o n s h i p can be f r u s t r a t i n g for both and can a f f e c t the c a r e of the p a t i e n t . D e s p i t e the emphasis on the r o l e of the family, Extended Care U n i t s , l i k e a l l h o s p i t a l s , are not r e s p o n s i b l e f o r the fa m i l y of the p a t i e n t . As Parkes (1981) p o i n t s out, fa m i l y members are not under any o b l i g a t i o n t o accept s t a f f guidance and i n f a c t they have a duty t o p r o t e c t the p a t i e n t from harm. Thus a c c o r d i n g t o Parkes, i t i s r i g h t and proper f o r f a m i l y members t o expect h o s p i t a l personnel t o e x p l a i n and j u s t i f y p l a n s and p r a c t i c e s . However, some f a m i l y members who see themselves i n t h i s guardian or advocacy r o l e , may not always be a b l e t o see the treatment i n a f a i r way. Family members may p r e f e r to blame the worsening symptoms on the treatment r a t h e r than 18 on the p r o g r e s s i o n of the i l l n e s s (Parkes, 1981). Understandably so, do c t o r s , nurses and c a r e a i d e s who f e e l they a re being c r i t i c i z e d may r e s i s t , f e e l d e f e n s i v e and rea c t n e g a t i v e l y t o f a m i l y members. Given the nature of the sometimes tenuous r e l a t i o n s h i p between f a m i l y members and p r o f e s s i o n a l c a r e g i v e r s , f u r t h e r c o m p l i c a t i o n s a r i s e when the r e s i d e n t i s i n the end stage of a t e r m i n a l i l l n e s s . One may assume that the s t a f f members in an Extended Care Unit would be e m o t i o n a l l y equipped t o deal w i t h both r e s i d e n t s and f a m i l i e s f a c i n g death. But the val u e s and r o l e s inherent i n the medical system, of which the Extended Care Unit i s p a r t , are o r i e n t e d t o those l i v i n g in the f a c i l i t y r a t h e r than dying i n the f a c i l i t y . The em-p h a s i s i n Long Term Care f a c i l i t i e s i s on the day to day bus i n e s s of l i v i n g and " q u a l i t y of l i f e " . Most s t a f f members have l i t t l e p r e p a r a t i o n t o deal with death of r e s i d e n t s . T h i s i s unf o r t u n a t e because how death i s handled can a f f e c t f a m i l y members b e f o r e and a f t e r the death of a 1oved one. Kastenbaum (1988) d i s c u s s e s the n o t i o n of a "good death" which was d e r i v e d from the work of an i n t e r n a t i o n a l ad hoc task f o r c e made up of medical p e r s o n n e l . Based on cu r r e n t standards of care p r a c t i c e s , the task f o r c e d e s c r i b e d items they f e l t c h a r a c t e r i z e d a "good death" f o r the s t a f f members. They l i s t e d such c r i t e r i a as the death being q u i e t , uneventful and s l i p p i n g by with as l i t t l e n o t i c e as p o s s i b l e . They suggested i t i s a "good death" when t h e r e i s no scene by fami l y members; s t a f f members make few t e c h n i c a l e r r o r s ; the dying p a t i e n t i s a b l e t o say goodbye; and the p a t i e n t and fa m i l y members are a b l e t o express t h e i r g r a t i t u d e f o r the ca r e r e c e i v e d from the s t a f f . The death r e s u l t i n g from Alzheimers' and other dementias, for example, do not f i t with the concept of the good death. These i l l n e s s e s are o f t e n p e r c e i v e d as degrad-ing as fami l y members f e e l the s h e l l of the person remains while the person they loved i s unreachable. Many are bothered by the unnatural mental blankness or the lack of r e c o g n i t i o n from a fa t h e r or husband s u f f e r i n g from dementia (Lowy, 1979). A n x i e t i e s f o r fami l y members, par-t i c u l a r l y a d u l t c h i l d r e n , may i n v o l v e the fear that the same f a t e awaits them i f the dementia i s found t o have a h e r e d i t a r y component. Some f a m i l y members see t h i s as d e a t h - i n - l i f e and have c o n f l i c t i n g f e e l i n g s of r e l i e f and g u i l t about t h e i r loved one's death a f t e r a long t e r m i n a l i l l n e s s which has r e s u l t e d i n t h i s type of dementia <Rando, 1988). While these f a m i l y members are o b v i o u s l y i n need of 20 p r o f e s s i o n a l support, the personnel of the Extended Care U n i t s , by and l a r g e , have not r e c e i v e d the a p p r o p r i a t e t r a i n i n g t o p r o v i d e t h i s support. Loss i n t h e Medical S e t t i n g Most s t a f f members are t r a i n e d and a c q u i r e experience in acute c a r e medical s e t t i n g s where f a r too o f t e n , l o s s i s d e a l t with o n l y s u p e r f i c i a l l y . Medical p r o f e s s i o n a l s are in the b u s i n e s s of c u r i n g and see those who d i e as the system's f a i l u r e s (Sudnow, 1967). It has been suggested that some p h y s i c i a n s and h o s p i t a l personnel p a r t i c i p a t e in an avoidance p a t t e r n that leaves the r e s i d e n t and f a m i l y members i s o l a t e d (Dubois, 1980). S t a f f members' f e e l i n g s of ineptness i n h a n d l i n g the dying and t h e i r f a m i l i e s may lead them t o avoid these r e s i d e n t s . Those who are at g r e a t e s t r i s k of being avoided a r e those who are unaware of t h e i r impending death and ask q u e s t i o n s , and those who have not yet accepted t h e i r death and are i n great p a i n . A t t i t u d e s , t r a i n i n g and inadequate s t a f f i n g are a l l reasons why the dying r e s i d e n t s ' and f a m i l y members' psycho-s o c i a l , and s p i r i t u a l needs are not always met. S t u d i e s of Canadian f a c u l t i e s of medicine and s c h o o l s of n u r s i n g r e v e a l e d that o n l y two s c h o o l s of n u r s i n g were g i v i n g an e l e c t i v e course on dying. S p e c i a l i z e d courses are given to those working i n P a l l i a t i v e Care through the i n s t i t u t i o n and through C o n t i n u i n g Education Programs (National Conference on S o c i a l Welfare, 1978). Schools of S o c i a l Work were not canvassed but I surmise they would not have more course o f f e r i n g s on i s s u e s of death and dying than i n other f a c u l t i e s . In the Extended Care U n i t , the a t t t i t u d e f a l l s some-where between the acute c a r e h o s p i t a l a t t i t u d e of i n v e s -t i g a t i n g , d i a g n o s i n g , c u r i n g and p r o l o n g i n g l i f e t o the view that "nothing can be done" for the t e r m i n a l l y i l l , except perhaps p r o v i d i n g r e l i e f from p a i n . The medical team may f e e l h e l p l e s s . Family members may o s c i l l a t e between " l e t t i n g go" of t h e i r r e l a t i v e or wanting them t o l i v e a while longer. S t a f f may m i n i m a l i z e the l o s s because they must bond to the next r e s i d e n t in a few hours, or because t h e r e i s nowhere for them t o g r i e v e (Hodgson, 1990). S t a f f members are o f t e n i n the p o s i t i o n of having deep f e e l i n g s of g r i e f f o r which they have no formal o u t l e t and p r o v i d i n g comfort t o f a m i l y members. If s t a f f members cannot meet t h e i r own needs, then they may not be e m o t i o n a l l y a b l e t o help f a m i l y members with t h e i r needs. T h i s r a i s e s q u e s t i o n s as t o how adequately f a m i l y members' needs are met. 22 Questions a l s o a r i s e about who has the r e s p o n s i b i l i t y f o r the ongoing needs of the bereaved a f t e r the death of t h e i r loved one at the Extended Care U n i t . The nature of long t e r m - i l l n e s s and c a r e g i v i n g i s such that the ECU becomes the focus of l i f e for many spouses. Once a r e s i d e n t d i e s , contact with the ECU ceases almost immediately. The l a s t set of q u e s t i o n s i n the study concerns who should p r o v i d e the bereavement c o u n s e l l i n g . Bereavement follow-up can be i n f o r m a l l y given by any personnel with whom the fa m i l y has bonded, or f o r m a l l y by programs and c o u n s e l l i n g organized for t h i s purpose. The d u r a t i o n of bereavement i s a l s o an i s s u e as bereavement i s an ongoing process of which d u r a t i o n i s as yet undetermined ( B u r n e l l , 1989). The study was undertaken as an attempt t o address these q u e s t i o n s about 1) the n e c e s s i t y of bereavement follow-up and support, 2) the most a p p r o p r i a t e p r o v i d e r of bereavement c o u n s e l l i n g and 3) the t i m i n g of bereavement follow-up and support. In the f o l l o w i n g chapter, a t h e o r e t i c a l framework i s p r o v i d e d which i n c l u d e s a review of 1) t h e o r i e s of aging, 2) t h e o r i e s of bereavement, and 3) r e s e a r c h on bereavement, c a r e g i v i n g i s s u e s , a n t i c i p a t o r y g r i e f , coping and s o c i a l supports. CHAPTER TWO: THEORETICAL FRAMEWORK Loss as E x p l a i n e d by T h e o r i e s o f Aging Gerontology i s a growing f i e l d with r e s e a r c h c e n t e r i n g on b i o l o g i c a l , s o c i a l and p s y c h o l o g i c a l a s p e c t s of aging. Research f i n d i n g s and t h e o r i e s of aging e x p l a i n s 1) d i f f e r e n c e s i n f u n c t i o n a l a b i l i t y of i n d i v i d u a l s of the same c h r o n o l o g i c a l age; 2) the connection between s o c i a l f a c t o r s and aging, such as income or race; 3) d i f f e r e n c e s i n b e h a v i o r a l responses t o aging; and 4) the e f f e c t of l i f e events on the aged, such as retirement and widowhood. Many c u r r e n t views on aging were shaped by re s e a r c h that was i n i t i a t e d b e f o r e the 1960's and gleaned from the i n s t i t u t i o n a l i z e d e l d e r l y (Busse et P f e i f f e r , 1977). These t h e o r i e s were a p p l i e d t o the n o n - i n s t i t u t i o n a l i z e d e l d e r l y d e s p i t e the f a c t that o n l y about 57. t o 8.5'/. of the e l d e r l y l i v e i n f a c i l i t i e s ( C o n n i d i s , 1989). 4 Often, p r e v i o u s r e s e a r c h on the e l d e r l y grouped together i n d i v i d u a l s 55 t o 90 years o l d . There i s a growing consensus that the e l d e r l y can be grouped i n t o 24 t h r e e broad c a t e g o r i e s : 1) the young-old, 55 t o 74 years; 2) the o l d - o l d , 75 t o 85 years; and 3) the o l d e s t - o l d , 85 years and over (Neugarten, 1974; Hooyman and Kiyak, 1989). The category at which one becomes o l d seems t o be l e a s t well d e f i n e d with many now determining the young-old p e r i o d beginning at age 65 ( R i l e y and R i l e y , 1986). These age group d i s t i n c t i o n s r e c o g n i z e v a r i o u s l e v e l s of f u n c t i o n i n g i n the " e l d e r l y " p o p u l a t i o n . Our views of aging and our d e f i n i t i o n s of when we a c t u a l l y become " o l d " w i l l c o n t i n u e t o change; our views w i l l change as the p o p u l a t i o n ages and c h a l l e n g e s t h e . s t e r e o t y p e s of p a s s i v i t y and d e c l i n e . There are a l r e a d y l e g a l c h a l l e n g e s t o v a r i o u s p l a c e s of employment that r e q u i r e mandatory retirement at age 65. V a r i o u s a g e - s p e c i f i c groups have formed a c r o s s the country to lobby government concerning p o l i c i e s and programs on pensions, t r a n s p o r t a t i o n , education, housing, and crime. The e l d e r l y are speaking for themselves about i s s u e s that a f f e c t t h e i r d a i l y l i v e s . T h e o r i e s of aging have not f u l l y c o n s i d e r e d the numerous f a c t o r s which a f f e c t the p h y s i c a l , p s y c h o l o g i c a l , and s o c i a l development of the aged such 25 as gender, socioeconomic c l a s s , e t h n i c i t y or f a m i l y background. Pre v a l e n t t h e o r i e s d e f i n e "adjustment t o aging" as one of the most d i f f i c u l t a s p e c t s of aging ( A t c h l e y , 1972; Aiken, 1978; K a l i s h , 1982; K e i t h , 1982). F a c t o r s thought to c o n t r i b u t e to t h i s adjustment are the l o s s e s of p h y s i c a l s t r e n g t h and beauty, l o s s of h e a l t h , l o s s of f a m i l y , - l o s s of employment, l o s s of f r i e n d s and the u l t i m a t e l o s s of s e l f through death. T h i s may be an a c c u r a t e assessment of the adjustment i s s u e s f a c i n g the e l d e r l y . However, t h i s adjustment must take p l a c e i n a s o c i e t y that views the e l d e r l y n e g a t i v e l y . Becker (1973) proposes that as a s o c i e t y we are preoccupied with youth and beauty and equate the two. He a s s o c i a t e s our l o v e a f f a i r with youth t o our d e n i a l and fear of death. With the decrease i n i n f a n t m o r t a l i t y and the i n c r e a s e i n l i f e expectancy r a t e s due to g e n e r a l l y improved h e a l t h of the p o p u l a t i o n , death now o c c u r s more f r e q u e n t l y i n the l a t e r y e a rs of l i f e than ever b e f o r e . Becker's (1973) i n s i g h t h e l p s us understand why n e g a t i v e s t e r e o t y p e s p e r s i s t and i n some cases i s o l a t e the e l d e r l y . Death has come t o be seen as the domain of the e l d e r l y . 26 The young i n our s o c i e t y have l i t t l e f i r s t - h a n d knowledge and e x p e r i e n c e with death, such as the death of a loved one (Becker, 1973). For the young person, the death of an e l d e r l y r e l a t i v e i s one that i s u s u a l l y e a s i e r t o accept than t h e a c c i d e n t a l death of a peer (Parkes* 1972). P r e v i o u s l y , a l l f a m i l y members were f a m i l i a r with death because death o c c u r r e d at home, and s e r v i c e s were h e l d t h e r e — death was v i s i b l e . Death has now become a medical phenomenon with approximately 757. of the p o p u l a t i o n dying i n the h o s p i t a l ( S t a t i s t i c s Canada, 1988). The death event has changed for everyone i n our s o c i e t y , i n c l u d i n g the e l d e r l y . The l i f e c y c l e view of the e l d e r l y suggests that death i s expected t o happen at the l a s t stage of l i f e , at the end of o l d age (Hooyman and Kiyak, 1988). T h i s theory s t a t e s that the e l d e r l y have experienced death more, think about death more and accept t h e i r own death more than younger people (Hooyman and Kiyak, 1988). While t h i s may be so, the e l d e r l y are a l s o aware that death does not occur as b e f o r e . Many e l d e r l y have knowledge of people who have had anything from c a t a r a c t surgery to heart t r a n s p l a n t s or other medical procedures which may prolong l i f e . L i k e a l l of us, 27 they may be i n f l u e n c e d by s c i e n c e and the impressive new t e c h n o l o g i e s i n t o b e l i e v i n g t h a t we can f i g h t d i s e a s e and sometimes death. Death may be seen by some as having more chance of being "put o f f " than i t once d i d . T h i s i s not t o suggest that some e l d e r l y have not come t o terms with t h e i r i n e v i t a b l e death. However, changes i n our s o c i e t y a f f e c t us a l l , i n c l u d i n g the e l d e r l y who are the r e c i p i e n t s of many medical procedures and treatments i n h o s p i t a l . In f a c t , the t e l l i n g s i g n s of these changes i s the i n t e r e s t i n " l i v i n g w i l l s " so that the e l d e r l y may choose to d i e without having medical i n t e r v e n t i o n s a p p l i e d near the time of death. How death i s e x p l a i n e d by t h e o r i e s of aging v a r i e s . There are numerous s o c i a l t h e o r i e s of aging: age s t r a t i f i c a t i o n theory, r o l e theory, disengagement theory, a c t i v i t y theory, and c o n t i n u i t y theory. T h e o r i e s that d e p i c t l o s s as a normal p a r t of aging c o n s i d e r one's death or the death of a spouse as j u s t one l o s s inherent i n the aging process. Some t h e o r i e s do not address the i s s u e of spousal l o s s at a l l , d e s p i t e the f a c t that 70*/. of women over the age of 75 are widowed. 28 Age s t r a t i f i c a t i o n theory p u r p o r t s that age peers are a f f e c t e d by the same world h i s t o r y which i n f l u e n c e s t h e i r views and c h o i c e s . The e l d e r l y d i f f e r from the young or the middle-aged i n that they share a common h i s t o r i c a l and environmental past, present and f u t u r e (Hooyman and Kiyak, 1988). R i l e y (1986) coined the term " c o h o r t - c e n t r i c " implying that those who experienced the same l i f e events such as the World Wars and the Great Depression would come t o see the world the same way through development of s i m i l a r v a l u e s , a t t i t u d e s and b e h a v i o r s . Spousal l o s s i s a l i f e event to which one c o u l d expect members of an "age c o h o r t " t o r e a c t i n a s i m i l a r f a s h i o n because of t h e i r shared v a l u e s and views. The shortcoming of age s t r a t i f i c a t i o n theory i n e x p l a i n i n g spousal l o s s i s that we know some bereaved may be at higher r i s k for depr e s s i o n or i l l n e s s due t o f a c t o r s such as f a m i l y support, gender, socioeconomic s t a t u s , e t h n i c group, or even the. r o l e s one has adopted i n l i f e (Maddison and Raphael, 1975). Role theory i m p l i e s that as we age a s e r i e s of r o l e s are l o s t . Retirement and widowhood s i g n i f y r o l e s that are l o s t and may not be r e p l a c e d . We ga i n a sense 29 of s e l f - e s t e e m from r o l e s with which we i d e n t i f y such as wife and worker (Lopata, 1973; Rosow, 1965). The l o s s of these r o l e s has an e f f e c t on the o l d e r person whom i s l a r g e l y " r o l e l e s s " . Lopata (1973) d i s c u s s e s the impact of r o l e l o s s on s o c i a l s t a t u s of o l d e r women who l o s e t h e i r i d e n t i t y as a wife once t h e i r husband d i e s . These women have "nowhere t o go" i n moving from w i f e t o widow. The r o l e of widow i s o f t e n the l a s t r o l e assignment women are gi v e n . Another theory of aging i s a c t i v i t y theory which i s based on the premise that those who maintain a c t i v i t y i n t o t h e i r l a t e r years w i l l be happier than those who do not (Havighurst (1968). The c r i t i c s of t h i s theory suggest that the standards of middle-age are being a p p l i e d t o the e l d e r l y i n that the person's s e l f - c o n c e p t c o n t i n u e s t o be d e f i n e d through a c t i v i t i e s engaged i n du r i n g middle-age. C o n t i n u a t i o n of these a c t i v i t i e s i m p l i e s a c o n t i n u i n g p o s i t i v e s e l f - c o n c e p t (Hooyman and Kiyak, 1988). Not a l l i n d i v i d u a l s are "active i n middle-age. Those who are a c t i v e i n middle-age may not want t o continue with the same a c t i v i t i e s i n o l d age i n which they p r e v i o u s l y engaged. In a d d i t i o n , f a c t o r s such as i n t i m a t e r e l a t i o n s h i p s , and for some, the need t o be p a s s i v e and r e f l e c t i v e are a s s o c i a t e d with 1 i f e - s a t i s f a c t ion (Hooyman and Kiyak, 1988). A c t i v i t y theory does not adequately address l o s s i n the e l d e r l y as i t does not al l o w for p e r i o d s of foc u s i n g on the past, a necessary element i n the g r i e f p r ocess (Parkes, 1972; Schuchter, 1986; Maddison and Raphael, 1975). A p r e c u r s o r t o a c t i v i t y theory i s disenqaqement  theory which assumes l o s s i n o l d age as an i n e v i t a b l e p r ocess whereby the e l d e r l y prepare f o r i t by becoming p a s s i v e , r e f l e c t i v e and inward l o o k i n g (Cumming and Henry, 1961). They suggest t h i s i s a h e a l t h y adjustment t o o l d age as the e l d e r l y no longer need t o be occupied with e x t e r n a l e x p e c t a t i o n s of the work environment or s o c i a l a c t i v i t y . T h i s l e a v e s time for r e f l e c t i o n and f a m i l y r e l a t i o n s h i p s . Based l a r g e l y on the concept of l o s s i n aging, i t does not address the idea that the r e a c t i o n t o l o s s , even spousal l o s s , may be temporary with i n d i v i d u a l s r e i n v e s t i n g i n a new person, a s u b s t i t u t e person or an a c t i v i t y (Rando, 1988; Parkes, 1972; Worden, 1982). C r i t i c s of t h i s theory argue that disengagement i s not n e c e s s a r i l y f u n c t i o n a l or p r e d i c t i v e with age (Hooyman and Kiyak, 1988). Disengagement theory does not take i n t o account the p e r s o n a l i t y , c u l t u r a l d i f f e r e n c e s , or exp e r i e n c e s of p r e v i o u s l o s s of the p o p u l a t i o n aged 65 and over. C o n t i n u i t y theory appears t o compensate f o r the e a r l i e r omissions i n a c t i v i t y and disengagement t h e o r i e s (Hooyman and Kiyak, 1988). P e r s o n a l i t y and l i f e s y t l e are seen t o i n f l u e n c e one throughout l i f e with l i t t l e d i f f e r e n c e emerging i n o l d age. Contrary t o the p r e v i o u s t h e o r i e s , c o n t i n u i t y theory does not address aging at a l l s i n c e i t does not account for p e r s o n a l i t y or l i f e s t y l e changes that may occur as a consequence of growing o l d . F a c t o r s such as reduced f i n a n c e s , f o r c e d r e t i r e m e n t , or development of a ch r o n i c i l l n e s s can have e f f e c t s on p e r s o n a l i t y and l i f e s t y l e . Widowhood may i n f l u e n c e p e r s o n a l i t y and may be d i f f e r e n t i n o l d age due t o fewer a v a i l a b l e c h o i c e s . Widows may be forc e d t o r e l o c a t e , may l o s e f r i e n d s and f e e l more dependent on f a m i l y than they wish t o be. The f a m i l y l i f e c y c l e theory views the aging process as part of the l i f e c y c l e of the i n d i v i d u a l and the f a m i l y ( C a r t e r and McGoldrick, 1989). Family systems theory i s a r e l e v a n t p e r s p e c t i v e when l o o k i n g at spousal l o s s i n the e l d e r l y . Family systems theory 32 addresses r e l a t i o n s h i p s between fami l y members i n the same and i n s u c c e s s i v e g e n e r a t i o n s . The r o l e of the o l d e r f a m i l y member v a r i e s from fam i l y t o f a m i l y and can be a f f e c t e d by c u l t u r e , sex, s t a t u s and s o c i o -economic c l a s s . C a r t e r & McGoldrick (1989) suggest that the r o l e played by the e l d e r l y f a m i l y member i s due t o h i s p l a c e i n the l i f e c y c l e — one of i n c r e a s i n g dependence on the middle g e n e r a t i o n due t o a decrease of f i n a n c i a l - i n d e p e n d e n c e , l o s s of f r i e n d s , l o s s of fam i l y members and l o s s of p h y s i c a l a b i l i t y . The task f a c i n g the fa m i l y of an aging person i s n e g o t i a t i n g a change i n t h e i r r e l a t i o n s h i p without the e l d e r l y f a m i l y member l o s i n g d i g n i t y and s t a t u s i n the f a m i l y . How the f a m i l y copes with these changes w i l l depend on the type of fa m i l y system which they have developed over time. Whether a fa m i l y has been open t o f r e e l y d i s c u s s i n g problems w i l l determine how they handle c r i s e s . P a t t e r n s of r e l a t i n g and f u n c t i o n i n g e x i s t i n f a m i l i e s and are passed down through g e n e r a t i o n s . A l s o passed down i s the emotional component a s s o c i a t e d with c e r t a i n events a fa m i l y has experienced. For example, i f a f a m i l y has experienced a t r a g i c death, d i f f i c u l t emotions may s u r f a c e when they deal with a c u r r e n t 33 s i t u a t i o n i n v o l v i n g death. Each member of the f a m i l y knows how the other f a m i l y members have r e a c t e d t o the event i n the past and may c o n t i n u e to i n t e r a c t a c c o r d i n g l y . C r i s e s such as c h r o n i c i l l n e s s and death i n f l u e n c e f a m i l y f u n c t i o n i n g and the e f f e c t s on the f a m i l y as a group are o f t e n not r e c o g n i z e d as consequences of the i l l n e s s or death ( C a r t e r and McGoldrick, 1989). How death has p r e v i o u s l y been seen and d e a l t with by the f a m i l y w i l l have an impact on a c u r r e n t l o s s . C e r t a i n f a c t o r s w i l l a f f e c t how death i s viewed by the f a m i l y system. These i n c l u d e the s o c i a l and e t h n i c context, p r e v i o u s l o s s e s , the t i m i n g of death i n the l i f e c y c l e , the nature of the death and i l l n e s s , the p o s i t i o n of the f a m i l y member and the openness of the f a m i l y system. In summary, t h e o r i e s of aging i d e n t i f y l o s s as an event that must be faced. Death of a spouse i s i d e n t i f i e d as a s i g n i f i c a n t event that can have in t e n s e and prolonged r e a c t i o n s (Aiken, 1978). However, the u n d e r l y i n g assumption i s that l o s s i s l e s s traumatic i n the e l d e r l y because i t happens to them more o f t e n when they l o s e f r i e n d s and s i b l i n g s . The major t h e o r i e s on aging do not s u f f i c i e n t l y answer what 34 the experience of l o s s i s l i k e for the e l d e r l y , thereby l e a d i n g us t o review the t h e o r i e s of bereavement t o gain a more complete understanding of the process. Bereavement - The Grief Process The term bereavement comes from the o l d E n g l i s h b e r o a f i a n , which means "to rob" or "to plunder". The meaning i s d e r i v e d from the idea that death robs us of a loved one ( B u r n e l l and Burnel1, 1989). The terms bereavement and g r i e f are used interchangeably i n the l i t e r a t u r e but a s p e c i f i c event such as the death of a spouse i s inherent i n the term bereavement. Bereavement a f f e c t s the p s y c h o l o g i c a l , p h y s i c a l and s o c i a l needs of those e x p e r i e n c i n g i t . The bereaved enter i n t o a p e r i o d of g r i e v i n g . G r i e f i m p l i e s a process of changing a f f e c t i v e s t a t e s over time. Models e x p l a i n i n g g r i e f have d i v e r s e t h e o r e t i c a l o r i e n t a t i o n s . Attachment theory put f o r t h by Bowlby (1980) i s found f r e q u e n t l y i n the l i t e r a t u r e on l o s s . H i s concept of "Object-Loss" r e f e r s t o the developmental stage of s e p a r a t i n g from one's mother. Bowlby f e e l s t h i s i s the f i r s t l o s s we experience. The emotional component of t h i s stage r e s u r f a c e s when one 35 e x p e r i e n c e s a l o s s as an a d u l t and the s i g n i f i c a n c e and d i f f i c u l t y one has w i l l depend on the s u c c e s s of the f i r s t e x p e r i e n c e wi th o n e ' s p a r e n t . Worden's (1982) framework i s a l s o at tachment t h e o r y ; he s e e s l o s s as p r o v o k i n g a s t r o n g emot iona l r e a c t i o n when the bonds a r e b r o k e n . Worden o u t l i n e s s e v e r a l components o f the g r i e f p r o c e s s which i n c l u d e ; 1) normal g r i e f r e a c t i o n s , 2) p h y s i c a l s e n s a t i o n s , 3) c o g n i t i o n s , and 4) b e h a v i o r s . Normal g r i e f r e a c t i o n s c o n s i s t o f s a d n e s s , anger , g u i 1 t , s e l f - r e p r o a c h and a n x i e t y . P h y s i c a l s e n s a t i o n s i n c l u d e h o l l o w n e s s in the s tomach, t i g h t n e s s in the c h e s t , b r e a t h l e s s n e s s , o v e r - s e n s i t i v i t y t o n o i s e and a l a c k o f e n e r g y . C o g n i t i o n s a re d i s b e l i e f , c o n f u s i o n , p r e o c c u p a t i o n wi th thoughts o f the deceased and d e a t h , and h a l l u c i n a t i o n s . I d e n t i f i e d b e h a v i o r s a r e s l e e p d i s t u r b a n c e s , a p p e t i t e changes , s o c i a l w i t h d r a w a l , a v o i d i n g reminders of the d e c e a s e d , s e a r c h i n g and c a l l i n g - o u t fo r the d e c e a s e d . Worden (1982) has conducted e x t e n s i v e r e s e a r c h on c a n c e r p a t i e n t s and t h e i r f a m i l i e s and s u g g e s t s the f o l l o w i n g four t a s k s a re needed f o r c o m p l e t i o n of g r i e v i n g ; 1) t o accept the r e a l i t y of the l o s s , 2) t o 36 experience the pa i n of g r i e f , 3) t o adjust t o an environment i n which the deceased i s missing, and, 4) to withdraw emotional energy and r e i n v e s t i t i n another r e l a t i o n s h i p . Proponents of the p s y c h o a n a l y t i c theory i n c l u d e Raphael and Volkan. Based on a Freudian concept of l o s s , they e x p l o r e primary f a c t o r s of p e r s o n a l i t y and r e l a t i o n s h i p (Raphael, 1980; Volkan, 1981). Volkan (1981) d i s c u s s e s p a t h o l o g i c a l mourning and the use of " l i n k i n g " o b j e c t s . The o b j e c t s symbolize the deceased and keep him a l i v e i n the mourner's mind. Volkan f e e l s that unresolved r e l a t i o n s h i p i s s u e s p r e c i p i t a t e the use of l i n k i n g o b j e c t s . O b j e c t s can i n c l u d e an a r t i c l e of c l o t h i n g or f u r n i t u r e of the deceased, a room or anything t o which the bereaved a s c r i b e s meaning. The t h e o r i e s which o u t l i n e stages i n the g r i e f process are perhaps best known because of Kubler-Ross (1969) who has d e f i n e d f i v e stages of dying that the p a t i e n t and f a m i l y members deal with; 1) d e n i a l and i s o l a t i o n , 2) anger, 3) b a r g a i n i n g , 4) de p r e s s i o n , and 5) acceptance. Kubler-Ross has o u t l i n e d these as emotions which can occur i n any order and has not implie d a l i n e a r process. The dying i n d i v i d u a l and h i s 37 f a m i l y members may o s c i l l a t e between a number of emotions. They may experience d i f f e r e n t emotions at one p o i n t i n time. Parkes (1972) o u t l i n e s four phases i n the g r i e f p r o c e s s which i n c l u d e ; 1) numbness, 2) urge t o recover the l o s t o b j e c t , 3) d i s o r g a n i z a t i o n and d e s p a i r , and 4) r e o r g a n i z a t i o n . Parkes, as does Bowlby (1980), i n d i c a t e s the occurrence of responses such as c r y i n g , s e l f - r e c r i m i n a t i o n and anger as instrumental responses by which l o v e o b j e c t s are r e t a i n e d . G l i c k , Weiss & Parkes (1974) conducted a one year l o n g i t u d i n a l study of widows on the s o c i a l and emotional impact of bereavement. They focused on emotional and p h y s i c a l r e a c t i o n s , p e r c e p t i o n of support people d u r i n g t h i s p e r i o d , ceremonies, changes i n r e l a t i o n s h i p s , and recovery. P h y s i c a l r e a c t i o n s i n c l u d e d eat and s l e e p d i s t u r b a n c e s , mental c o n f u s i o n , exhaustion and d e p r e s s i o n . In an e a r l i e r work, Parkes (1972) d i s c u s s e d major i s s u e s i n the g r i e f p rocess and how these i s s u e s can c r e a t e a s u b j e c t i v e f e e l i n g of i l l -heal t h . Shuchter (1986) o u t l i n e s s i m i l a r stages i n the g r i e f process i n c l u d i n g : emotional and mental responses 36 such as l o n e l i n e s s , anger and fear; coping; changing r e l a t i o n s h i p s ; changing f u n c t i o n s ; and g a i n i n g a new i d e n t i t y . G a i n i n g a new i d e n t i t y i s a theme echoed by Lopata (1979); Maddison & Raphael (1975). They a l l t a l k about the l o s s of s t a t u s and perhaps income which can l e a d t o f e e l i n g s of inadequacy. Lopata (1973) goes beyond t h i s concept and t a l k s of "stages of widowhood" where a f t e r a time support people want something back from the widow. Furthermore, she s t a t e s that widows have t r o u b l e moving out of widowhood because t h e r e are no a l t e r n a t i v e s for o l d e r women i n our s o c i e t y other than t o be a wife or a mother. "Widowhood i s l a r g e l y a women's i s s u e . Because women l i v e longer than men and marry men o l d e r than themselves, they are approximately four times more l i k e l y t o be widowed" (Gee and K i m b a l l , 1987, p.89). Rando's (1988) r e a c t i o n theory i n d i c a t e s broad c a t e g o r i e s of r e a c t i o n s r a t h e r than stages; avoidance, c o n f r o n t a t i o n and r e - e s t a b l i s h m e n t . She o u t l i n e s i n f l u e n c e s and t a s k s of g r i e f work which must be con s i d e r e d such as changing i d e n t i t y , sex d i f f e r e n c e s , l o n e l i n e s s , a n t i c i p a t o r y g r i e f , c a r e g i v i n g for the t e r m i n a l l y i l l and r e l a t i o n s h i p i s s u e s . Her model 39 i n c l u d e s p s y c h o l o g i c a l , s o c i o l o g i c a l , socioeconomic and developmental f a c t o r s . A b r i e f survey on the models of bereavement i n d i c a t e that these t h e o r i e s do not s p e c i f i c a l l y account for age as an important f a c t o r i n bereavement. T h e o r i e s of Bereavement a p p l i e d t o the E l d e r l y Bereavement r e s e a r c h has increased i n the past twenty years s i n c e the advent of P a l l i a t i v e and Hospice c a r e (Ajemian & Mount, 1980). P r e v i o u s l y t h i s r e s e a r c h was based on young t o middle-aged s u b j e c t s . Now the r e s e a r c h i n c l u d e s the young-old as the average P a l l i a t i v e Care p a t i e n t i s between 50 and 70 years o l d (Ajemian, 1980). Bowlby's theory of spousal bereavement i s based on a c o l l e c t i o n of ten p r i o r s t u d i e s (1980). In a l l the s t u d i e s , the s u b j e c t s were under 65 with o n l y two s t u d i e s u sing any s u b j e c t s 65 years or o l d e r . Bowlby i n d i c a t e s t h i s was i n t e n t i o n a l as the r e s e a r c h e r s wanted t o study those at higher r i s k for prolonged emotional d i s t u r b a n c e . He b e l i e v e d the e l d e r l y were not at r i s k as they would not f e e l the death t o be unt imely. 40 Kubler-Ross (1969) and Worden (1982) based t h e i r t h e o r i e s on work with cancer p a t i e n t s p r i m a r i l y under the age of 65, many of whom are c h i l d r e n and the parents of c h i l d r e n dying with cancer. Parkes (1972, 1974) whose work i s h i g h l y regarded, based h i s theory of g r i e f on two l o n g i t u d i n a l s t u d i e s of widows and widowers i n London. The p a r t i c i p a n t s of the f i r s t study were aged 26 t o 45, and i n the second a l l were aged 26 to 65. Kozma and Stone (1975) c r i t i c i z e the works of Bowl by and Parkes as age-biased. They f e e l the instrumental responses c i t e d as ways of r e t a i n i n g the love o b j e c t (such as c r y i n g , anger and . s e l f -r e c r i m i n a t i o n ) may change duri n g adulthood. Parkes and Bowlby do not account for age i n t h e i r t h e o r i e s . There i s a lack of c l a r i t y i n t h e o r i e s of^ aging and bereavement as to whether or not bereavement i s d i f f e r e n t for the e l d e r l y than f o r younger people. There i s a l s o a lack of consensus about the consequences of bereavement on the e l d e r l y such as incr e a s e d m o r t a l i t y (Osterweiss, 1984). Some f a c t o r s such as h e a l t h problems and s o c i a l i s o l a t i o n have been shown t o be have n e g a t i v e consequences l e a d i n g t o 41 higher i n c i d e n c e s of d e p r e s s i o n i n the e l d e r l y bereaved (Conway, 1988). Rando (1988) has o u t l i n e d other f a c t o r s which a f f e c t the g r i e v i n g process and which are p a r t i c u l a r l y p e r t i n e n t t o the e l d e r l y and the Extended Care Unit spouse. C a r e g i v i n g i s s u e s , a n t i c i p a t o r y g r i e f , coping with spousal l o s s , and s o c i a l supports are a l l f a c t o r s which may have an impact on how the e l d e r l y experience bereavement a f t e r t h e i r spouse d i e s at the Extended Care U n i t . F a c t o r s A f f e c t i n g the G r i e f P r o c e s s C a r e g i v i n g Issues C a r e g i v i n g i m p l i e s a process whereby one i n d i v i d u a l looks a f t e r another and takes r e s p o n s i b i l i t y f o r p r o v i d i n g emotional support, help with household t a s k s , and personal care (Lowy, 1979). The type of help provided can i n c l u d e any or a l l of the f o l l o w i n g ; payment of b i l l s and monitoring f i n a n c i a l a s s e t s , meal p r e p a r a t i o n , a s s i s t a n c e with m o b i l i t y and l i s t e n i n g and being empathic t o the i l l i n d i v i d u a l (Couper, 1989). The a d d i t i o n a l r e s p o n s i b i l i t y can be e m o t i o n a l l y 42 and p h y s i c a l l y s t r e s s f u l for the c a r e g i v e r . Because of the i n c r e a s e d demands on the c a r e g i v e r , she may not have enough time for h e r s e l f or enough energy l e f t over for other a c t i v i t i e s thereby i n c r e a s i n g her i s o l a t i o n (Lowy, 1979; Couper, 19B9; C a r t e r and McGoldrick, 1989). S t r e s s i s generated through the adjustment t o increased p h y s i c a l and emotional demands when you are g e t t i n g o l d e r y o u r s e l f , f e e l i n g a personal r e d u c t i o n i n energy l e v e l and have few f a m i l y members with which t o share the burden (Couper, 1989, p.249). C a r e g i v e r s are fa m i l y members, f r i e n d s , home support personnel or s t a f f members from an i n s t i t u t i o n . Most f a m i l y c a r e g i v e r s are women — daughters or wives of the i l l person. Some of the reasons for t h i s are that women g e n e r a l l y o u t l i v e men, women's r o l e s have in c l u d e d that of n u r t u r e r , and women's c a r e e r s have been seen as secondary t o that of t h e i r male spouses. C u r r e n t l y , c a r e g i v i n g d u t i e s a re added t o many women's f u l l time employment and p r i o r household and p a r e n t i n g o b i i g a t ions. Of course, t h e r e are male c a r e g i v e r s . These are 43 most f r e q u e n t l y men who take r e s p o n s i b i l i t y t o a s s i s t a c h r o n i c a l l y i l l spouse. Couper (1989) d i s c u s s e s how men i n l a t e r l i f e g e n e r a l l y change some l i f e s t y l e p a t t e r n s which prepare them f o r c a r e g i v i n g : Although women may be more accustomed t o c a r e g i v i n g t a s k s , men i n l a t e r l i f e r e p o r t p a r t i c i p a t i n g more i n general household t a s k s than they d i d i n e a r l i e r years (Couper, 1989, p.7). When an e l d e r l y spouse becomes i l l , i t i s o f t e n the h e a l t h i e r spouse that looks a f t e r her p h y s i c a l needs. On o c c a s i o n , f a c i l i t y placement w i l l be sought a f t e r an acute i l l n e s s of the o r i g i n a l l y h e a l t h i e r spouse. " D i f f i c u l t i e s i n c r e a s e for spouse c a r e g i v e r s as t h e i r own h e a l t h d e t e r i o r a t e s , sometimes brought on by the added s t r e s s and p h y s i c a l demands of c a r e g i v i n g . " (Couper, 1989, p. 7) In a d d i t i o n t o p h y s i c a l exhaustion, emotional s t r a i n can r e s u l t from v a r i o u s a s p e c t s of the c a r e g i v i n g r e l a t i o n s h i p . A p h y s i c a l or mental d i s a b i l i t y c r e a t e s changes i n the m a r i t a l dyad i n areas of l i f e s t y l e , intimacy, d a i l y t a s k s and dependency. I n i t i a l s tages of dementia can be f r u s t r a t i n g and u p s e t t i n g for the i l l person when he r e a l i z e s h i s 44 a b i l i t y i s d e c l i n i n g . For example, c o n f l i c t can a r i s e when an e l d e r l y spouse assumes c o n t r o l - o f f i n a n c i a l arrangements when her spouse was formerly i n charge of such t a s k s . Both p a r t n e r s need to accept the change i n r o l e s and yet c o n f l i c t r e s o l u t i o n i s impossible as dementia a l s o a f f e c t s judgement and reasoning power. It becomes the r e s p o n s i b i l i t y of the spouse t o cope with a s i t u a t i o n for which she i s not prepared. "Both persons may sense a l o s s of personal c o n t r o l and i n c r e a s i n g v u l n e r a b i l i t y " (Couper, 1989, p.7) According t o Couper (1989), wives of dependent husbands are l e a s t l i k e l y t o seek or r e c e i v e support. The reason for not r e q u e s t i n g a s s i s t a n c e appears t o be fear of being a burden t o her c h i l d r e n , her b e l i e f i n m a r i t a l commitment about c a r i n g i n s i c k n e s s or i n h e a l t h , and f e e l i n g s of g u i l t that she i s s t i l l v e n j o y i n g a c t i v i t i e s while her spouse l i e s i n the hosp i t a l . Some spouses can become o v e r p r o t e c t i v e or can be immobilized by the s t r e s s of c a r e g i v i n g . Another aspect of the c a r e g i v i n g e xperience i s that the c a r e g i v e r wishes t o p r o v i d e the best care for the i l l person w hile he i s s t i l l a l i v e . Inherent i n t h i s 45 t h i n k i n g are thoughts of the impending death of t h e i r loved one. The concept of a n t i c i p a t o r y g r i e f d e a l s with t h i n k i n g about the death b e f o r e i t occurs. It a l s o means e x p e r i e n c i n g some of the emotions i n v o l v e d in the g r i e f p rocess. Anticipatory Grief The occurrence of a n t i c i p a t o r y g r i e f i s widely debated. The term r e f e r s t o the process whereby one prepares f o r the e v e n t u a l i t y of death l i t t l e by l i t t l e (Raphael, 1981; Rando, 1988; Kubler-Ross, 1969; Parkes, 1981). Parkes (1981) d i s c o u n t s the p o s s i b i l i t y of a n t i c i p a t o r y g r i e f . Because the l a s t stage of the g r i e f p rocess i s a reinvestment of energy i n another r e l a t i o n s h i p , Parkes (1981) f e e l s t h i s i s not p o s s i b l e u n l e s s the death i s a c t u a l l y experienced. Rando (1988) counters t h i s argument by s a y i n g a n t i c i p a t o r y g r i e f does e x i s t but does nbt mean premature detachment. Rando (1988) suggests t h a t : even i n the shadow of the u l t i m a t e l o s s of death, t h e r e are other l o s s e s that have a l r e a d y o c c u r r e d that i p s o f a c t o n e c e s s i t a t e g r i e f , (p.71) Rando's d e f i n i t i o n takes i n t o account other l o s s e s 46 inherent i n the c a r e g i v i n g p rocess of a t e r m i n a l l y i l l spouse. The spouse of a p a t i e n t with a prolonged i l l n e s s i s a l r e a d y s u f f e r i n g l o s s e s i n the present. Such l o s s e s i n c l u d e w i t n e s s i n g the p r o g r e s s i v e d e b i l i t a t i o n and i n c r e a s i n g dependence of the p a t i e n t (Rando, 1988; Howell, 1986). The c a r e g i v i n g spouse exp e r i e n c e s the l o s s of h i s i l l spouse d a i l y through reduced companionship, shared experience and d e c i s i o n -making, and a sexual r e l a t i o n s h i p . These are l o s s e s that occur i n the present b e f o r e the death. The c a r e g i v e r can a l s o experience g r i e f for l o s s e s that w i l l happen a f t e r the death such as l o n e l i n e s s , economic u n c e r t a i n t y , or even awareness that her spouse w i l l not be at an upcoming f a m i l y event (Rando, 1988). Rando (1988) proposes that b a l a n c i n g the c o n t r a d i c t o r y demands of a n t i c i p a t o r y g r i e f means the person f e e l s p u l l e d i n s e v e r a l d i r e c t i o n s at once. F i r s t , they are p u l l e d toward the loved one by p r o v i d i n g i n c r e a s e d a t t e n t i o n i n c a r e g i v i n g and meeting the needs of a t e r m i n a l l y i l l person. Secondly, they are p u l l e d t o maintain the s t a t u s quo of the r e l a t i o n s h i p on as many l e v e l s as p o s s i b l e through ongoing frequent contact And f i n a l l y , they are p u l l e d 47 away from the loved one by withdrawing emotional energy from the dying person who w i l l not share i n the f u t u r e with them. It appears that a n t i c i p a t o r y g r i e f engages the spouse in the g r i e v i n g process b e f o r e the death of her spouse. As mentioned e a r l i e r , the d i s s e n s i o n about a n t i c i p a t o r y g r i e f i s whether one can e m o t i o n a l l y prepare for death (Parkes, 1972). Rando t h i n k s that a n t i c i p a t o r y g r i e f engages the spouse in the g r i e v i n g p rocess b e f o r e the death. T h i s enables the spouse t o prepare or cope with the concept of the death o c c u r r i n g . Rando (1988) o u t l i n e s a v a r i e t y of i n t e r n a l and e x t e r n a l coping processes that occur as a r e a c t i o n to a n t i c i p a t o r y g r i e f and g r i e f i n g e n e r a l . These i n c l u d e i n d i v i d u a l p s y c h o l o g i c a l processes, and the u t i l i z a t i o n of f a m i l y and f r i e n d s f o r support. Coping Current i n t e r e s t i n understanding the p r o c e s s of a d a p t a t i o n to c r i s e s and events of ad u l t l i f e has l e d t o a r e c o g n i t i o n of the need for b e t t e r d e s c r i p t i o n , c o n c e p t u a l i z a t i o n , and 48 o p e r a t i o n a l i z a t i o n of the d i v e r s e b e h a v i o r s i n v o l v e d i n the coping process (Kahana, F a i r c h i l d , and Kahana, 1982, p.145). Measurements of p e r s o n a l i t y are o f t e n employed as one c r i t e r i a t o assess coping. Kahana, F a i r c h i l d , and Kahana (1982) point out t h a t , although p e r s o n a l i t y t r a i t s are used t o assess coping, t h e r e i s l i t t l e follow-up that d i f f e r e n t i a t e s s u c c e s s f u l coping from adjustment. They f u r t h e r s t a t e that l i t t l e r e s e a r c h has been done on a d a p t i v e s t r a t e g i e s employed by o l d e r peop1e. B a t t i n and Ark i n (1980) support the concept of p e r s o n a l i t y assessment when s t u d y i n g v u l n e r a b i l i t y i s s u e s among the e l d e r l y bereaved. They c a t e g o r i z e d coping mechanisms and suggest s e v e r a l s t y l e s that i n d i c a t e high r i s k p o t e n t i a l for unresolved g r i e v i n g . Among them are those whose h i s t o r y l e a d s the bereaved t o f e e l r e s p o n s i b l e for the l o s s and those who had ambivalence i n the r e l a t i o n s h i p t o the deceased. Gass and Chang (1989) app r a i s e d bereavement and coping r e s o u r c e s in widowers and widows. They used the "Ways of Coping" c h e c k l i s t which c o n s i s t s of 68 items d e s c r i b i n g b e h a v i o r a l and c o g n i t i v e coping s t r a t e g i e s 49 used i n s p e c i f i c s t r e s s f u l s i t u a t i o n s . Coping i s d e f i n e d as c o n s t a n t l y changing c o g n i t i v e and b e h a v i o r a l e f f o r t s t o manage s p e c i f i c e x t e r n a l and/or i n t e r n a l demands that are t a x i n g or which exceed a person's r e s o u r c e s . Coping may be d i r e c t e d at (a) managing or a l t e r i n g a problem causing d i s t r e s s (problem-focused coping) or (b) r e g u l a t i n g emotional response t o the problem (emotion-focused c o p i n g ) . (Gass and Chang, 1989, p. 31) T h e i r f i n d i n g s were that gender and type of death were s i g n i f i c a n t f a c t o r s a f f e c t i n g coping and s t r e n g t h of a v a i l a b l e r e s o u r c e s . P e r c e p t i o n by the bereaved of the bereavement process w i l l a l s o e f f e c t what coping s t r a t e g i e s they use. P e r c e p t i o n of the s i t u a t i o n b e f o r e the death, such as i n a n t i c i p a t o r y g r i e f , was a l s o found to be a s i g n i f i c a n t f a c t o r i n Nunn's (1986) study of v i s i t i n g spouses of Extended Care Unit r e s i d e n t s . C o n f l i c t with s t a f f was n e a r l y always mentioned as a problem f o r v i s i t i n g spouses. S t a f f members and the spouses had d i f f e r e n t p e r c e p t i o n s of the t a s k s r e q u i r e d and the method which should be used t o c a r r y out these t a s k s . 50 These spouses were coping with t h e i r spouses' i l l n e s s e s by f r e q u e n t l y v i s i t i n g and c o n t i n u i n g t o p r o v i d e c a r e . Sanders (1985) s p e c i f i c a l l y c o n s i d e r e d age-r e l e v a n t f a c t o r s i n her design of "The G r i e f Experience Inventory". She administered her q u e s t i o n n a i r e t o groups of e l d e r l y bereaved respondents t o check i t s v a l i d i t y . The focus of t h i s t o o l i s t o assess the m u l t i - d i m e n s i o n a l i t y and the l o n g i t u d i n a l e f f e c t s of the g r i e f p r o c e s s . The bereavement s c a l e s of the i n v e n t o r y i n c l u d e q u e s t i o n s about d e s p a i r , anger, g u i l t , s o c i a l i s o l a t i o n , somatic i l l n e s s , and death a n x i e t y . The coping s c a l e s i n c l u d e q u e s t i o n s about s l e e p d i s t u r b a n c e s , a p p e t i t e , p h y s i c a l symptoms and dependency. Evident i n both the t o o l s used by Gass and Chang (1989) and Sanders (1985) i s that coping can be seen as both p o s i t i v e and n e g a t i v e . Negative thoughts or b e h a v i o r s such as increased d r i n k i n g or d e p r e s s i o n may l e a d f a m i l y or f r i e n d s of the bereaved t o encourage him to seek a s s i s t a n c e with h i s g r i e f . Other n e g a t i v e methods of coping such as psycho-somatic complaining may have p o s i t i v e r e s u l t s i f p r o f e s s i o n a l s are a b l e to i d e n t i f y the behavior as a symptom of the g r i e v i n g 51 process. Somatic i l l n e s s has been i d e n t i f i e d as common among the e l d e r l y bereaved ( B a t t i n , A r k i n , Qerber and Wiener, 1975). C u l t u r a l d i f f e r e n c e s have been noted i n behavior a s s o c i a t e d with somatic i l l n e s s . Some groups have a s t r o n g e r t r a d i t i o n a l concern about h e a l t h and c o n s i d e r complaining behavior a p p r o p r i a t e as a coping mechanism when i l l or under s t r e s s . Another way of coping, u s u a l l y p e r c e i v e d as p o s i t i v e , i s r e l i a n c e on b e l i e f s such as r e l i g i o n . "Persons with r e l i g i o u s c o n v i c t i o n s can embrace t h e i r f a i t h d u r i n g d i f f i c u l t times". (Couper, 1989, p. 105) A t c h l e y (1972) a l s o i n d i c a t e s that b e l i e f i n l i f e a f t e r death may i n c r e a s e with age. These b e l i e f s may a s s i s t in coping with the death of a spouse. We know that i n d i v i d u a l s with the l e a s t a n x i e t y about dying are those with s t r o n g r e l i g i o u s b e l i e f s and those most confirmed i n t h e i r lack of r e l i g i o u s b e l i e f (Hooyman and Kiyak, 1988; A t c h l e y , 1972; K a l i s h , 1982). Those most anxious about dying are i r r e g u l a r church-goers (Hooyman and Kiyak, 1988). R e l i g i o u s b e l i e f s and f u n e r a l s e r v i c e s are o f t e n i n t e r r e l a t e d f a c t o r s i n the bereavement process. Rando 52 (1988) b e l i e v e s s t r o n g r e l i g i o u s b e l i e f s , which were more common i n the past, help the f a m i l y cope. She f e e l s that because church attendance has decreased we lack r i t u a l s and ceremonies which p r o v i d e support and g i v e the f a m i l y d i r e c t i o n about how t o g r i e v e . It i s t r u e that a l l age groups have shown a d e c l i n e i n church or synagogue attendance s i n c e 1965 (Hooyman and Kiyak, 1989). However, r e l i g i o n s t i l l appears t o be important in o l d e r people's l i v e s as SOX of s e n i o r s i n a 1982 American survey claimed t h e i r r e l i g i o u s f a i t h as an important i n f l u e n c e (Hooyman and Kiyak, 1989). One aspect of f o r m a l i z e d r e l i g i o n i s s o c i a l c o ntact which the church-goer has with o t h e r s . S o c i a l contact may be as important as r e l i g i o u s f a i t h . S o c i a l support does p l a y an important r o l e i n p o s i t i v e outcome i n the bereavement process (Parkes, 1981; Worden, 1982). Soc i a1 Support T h o i t s (1986) c o n c e p t u a l i z e d s o c i a l support as coping a s s i s t a n c e , as both are aimed at managing s t r e s s f u l behavior. S o c i a l supports a s s i s t the person to change the s i t u a t i o n , t o change the meaning of the 53 s i t u a t i o n , or to change her emotional r e a c t i o n t o the s i t u a t i o n ( T h o i t s , 1986). Attempts at support that were p e r c e i v e d as h e l p f u l were those that allowed the i n d i v i d u a l t o t a l k about her f e e l i n g s i f she wished. The bereaved a l s o found i t h e l p f u l t o be i n contact with those who have experienced a s i m i l a r s i t u a t i o n (Lehman, E l l a r d , Wortman, 1986). C o n s i d e r a b l e r e s e a r c h now i n d i c a t e s that s o c i a l support reduces, or b u f f e r s , the adverse p s y c h o l o g i c a l impacts of exposure t o s t r e s s f u l l i f e events and ongoing l i f e s t r a i n s . ( T h o i t s , 1986, p.416) Lazurus (1984) i n d i c a t e s that when i n d i v i d u a l s face a l i f e c r i s i s such as bereavement, t h e r e are two p o s s i b l e sources of s t r e s s , the event i t s e l f and the p o s s i b l e r e a c t i o n . I s o l a t i n g o n e s e l f which i s a common consequence of bereavement, may be one example of a s t r e s s f u l r e a c t i o n . The bereaved i n d i v i d u a l may withdraw from s o c i a l c o n t a c t s as a n a t u r a l bereavement r e a c t i o n . Moreover, some e l d e r l y people have l o s t many of t h e i r sources of support such as s i b l i n g s , f r i e n d s and spouse ( F r a n c i s , 1989; Lund, Cas e r t a , Van P e l t , 54 1990). Both formal and informal support systems are c o n s i d e r e d h e l p f u l d u r i n g bereavement. Informal support systems i n c l u d e f a m i l y members, f r i e n d s and neighbours. Formal support systems i n c l u d e s p r o f e s s i o n a l contact such as a f a m i l y p h y s i c i a n , p r o f e s s i o n a l c o u n s e l l i n g or a bereavement i n t e r v e n t i o n program. Family Most r e s e a r c h f i n d i n g s i n d i c a t e that spouses are the primary sources of support i n the f a m i l y and t h e i r presence i s the major f a c t o r a s s o c i a t e d with a number of measures of w e l l - b e i n g ( M i l a r d o , 1988, p. 173). At a time of s t r e s s such as bereavement of a spouse the bereaved has l o s t her primary source of support. Other f a m i l y members may then i n c r e a s e contact with the e l d e r l y bereaved and p r o v i d e some support. Contrary t o myths about the abandonment of s e n i o r c i t i z e n s i n western s o c i e t y , many s e n i o r s do have frequent and r e g u l a r contact with t h e i r f a m i l i e s (Wenger, 1984). Only about 37. of the e l d e r l y have no i 55 r e l a t i v e s ( M i l a r d o , 1988). In the United S t a t e s , almost B07. of the e l d e r l y have c h i l d r e n , and 3/4 of these see one c h i l d as l e a s t weekly. It i s o f t e n t r u e that the c h i l d r e n of the e l d e r l y person p r o v i d e support f o l l o w i n g bereavement in emotional and sometimes p r a c t i c a l ways. However, C i c i r e l l i (1981) c l a i m s that a d u l t c h i l d r e n a c t u a l l y p r o v i d e l i t t l e support but express " f i l i a l a n x i e t y " about the p o s s i b i l i t y of these demands being p l a c e d on them. He e x p l a i n s t h i s as r e l a t i n g t o the f a c t s that o l d e r women today have fewer daughters, 1.2 i n s t e a d of the p r e v i o u s 3.0 they had i n 1900; and because these daughters have t h e i r own competing demands of jobs and households t o maintain ( C i c i r e l l i , 1981). T h i s makes them, as primary c a r e g i v e r s , g e n e r a l l y l e s s a v a i l a b l e . C i c i r e l l i (1981) s t a t e s that middle-aged a d u l t daughters tend t o be c l o s e r t o t h e i r e l d e r l y p a r e n t s than sons are. Sons tend t o help i n p r a c t i c a l matters, such as f u n e r a l arrangements and f i n a n c e s , while daughters tend to f o s t e r c l o s e r emotional t i e s by g i v i n g s e r v i c e s and v i s i t i n g ( C i c i r e l l i , 1981). In a d d i t i o n , Baugher (1986) conducted a study asking bereaved spouses to r a t e the i n t e n s i t y of t h e i r 56 f e e l i n g s of g r i e f . He then asked the ad u l t c h i l d r e n of the bereaved t o r a t e t h e i r p a r e n ts' f e e l i n g s of g r i e f . He found that the c h i l d r e n o f t e n underestimate t h e i r p a r e n t s' f e e l i n g s of g r i e f . It appears that even i f support i s provided by family, a d d i t i o n a l support may be r e q u i r e d for some e l d e r l y bereaved. Many people t u r n t o f r i e n d s and community groups f o r ongoing s o c i a l a c t i v i t y and support. The r o l e f r i e n d s and community p l a y i n bereavement support warrants f u r t h e r a t t e n t i o n . Fr i ends/Communi t v • f c r i t i c a l import i s the d e f i n i t i o n and p e r c e p t i o n of support by the bereaved. Lund, C a s e r t a , and Van P e l t (1990) researched both the s t r u c t u r a l and q u a l i t a t i v e a s p e c t s of s o c i a l support networks i n the e l d e r l y bereaved. T h e i r f i n d i n g s i n d i c a t e c o n s i d e r a b l e s t a b i l i t y i n both aspects -- s t r u c t u r a l and q u a l i t a t i v e — of the s o c i a l support networks over the f i r s t two years a f t e r bereavement. Most s e n i o r s i n the study f e l t q u i t e p o s i t i v e about t h e i r support networks. T h e i r f i n d i n g s a l s o suggest that those over 74 might be at the g r e a t e s t r i s k because of s m a l l e r networks. They 57 a l s o f e l t l e s s c l o s e t o people i n t h e i r networks than d i d other age groups i n d i c a t i n g f u t u r e r i s k p o t e n t i a l . Lopata (1988) found that bereavement can a c t u a l l y be a time when widowhood s t i m u l a t e s g r e a t e r s o c i a l p a r t i c i p a t i o n i n the e l d e r l y and s o c i a l contact can in c r e a s e . Adams and B I i e s z n e r (1989) propose that a broader p e r s p e c t i v e of s o c i a l networks i s u s e f u l i n that o u t -of-town f r i e n d s , neighbours or extended f a m i l y members may be p e r c e i v e d as i n t i m a t e s by the o l d e r person. They a l s o suggest that p r o f e s s i o n a l s may be p e r c e i v e d by a s e n i o r as an i n t e g r a l part of her s o c i a l support network. Some i n d i v i d u a l s may f i n d themselves without f a m i l y they can r e l y on or perhaps may have o u t l i v e d t h e i r f r i e n d s . Many e l d e r l y spouses who have been i n a c a r e g i v i n g r o l e may f e e l i s o l a t e d from people i n t h e i r s o c i a l networks. At these times and i n other times of c r i s e s , such as d u r i n g bereavement, p r o f e s s i o n a l a s s i s t a n c e may be needed. 58 P r o f e s s i o n a l Support The evidence suggests that everyone needs reassurance, and some education and i n f o r m a t i o n f o l l o w i n g bereavement. . . . h e a l t h p r o f e s s i o n a l s have a r e s p o n s i b i l i t y t o o f f e r support, t o inform the bereaved of a d d i t i o n a l r e s o u r c e s i n the community (such, as mutual support group), and t o monitor t h e i r p r o g r e s s and make r e f e r r a l s t o mental h e a l t h p r o f e s s i o n a l s as a p p r o p r i a t e . (Osterweis, Solomon & M o r r i s , 1984, p.272) Parkes (1981) f e e l s that "one reason why bereaved people are o f t e n r e l u c t a n t t o seek help from the o r g a n i z a t i o n s and i n d i v i d u a l s a v a i l a b l e t o them i s the f e e l i n g of d i s t r u s t or s u s p i c i o n of s t r a n g e r s that i s a n a t u r a l consequence of bereavement", (p.54) Whether f o r m a l l y organized by p r o f e s s i o n a l s or s e l f - h e l p groups, the g o a l s of bereavement i n t e r v e n t i o n are the f a c i l i t a t i o n of the g r i e v i n g p rocess and the a l l e v i a t i o n of i t s n e g a t i v e consequences (Osterweis, Solomon & M o r r i s , 1984). Bereavement i n t e r v e n t i o n can mean psychotherapy provided by mental h e a l t h p r o f e s s i o n a l s such as p s y c h i a t r i s t s , p s y c h o l o g i s t s or s o c i a l workers. 59 Bereavement i n t e r v e n t i o n can mean mutual a i d or support groups run by p r o f e s s i o n a l s or other bereaved people. In many s i t u a t i o n s , bereavement support can a l s o mean medication p r e s c r i b e d by a f a m i l y p h y s i c i a n or other mental h e a l t h p r o f e s s i o n a l f o r some of the symptoms of bereavement (Osterweis, Solomon & M o r r i s , 1984). Not everyone needs p r o f e s s i o n a l bereavement support. However, one aspect of the g r i e f p r o c e s s i s f e e l i n g i s o l a t e d which can hinder the bereaved i n d i v i d u a l from seeking h e l p . Thus, i t i s of tremendous importance t o u t i l i z e the r e l a t i o n s h i p s i n which the bereaved are a l r e a d y engaged such as the h o s p i t a l d o c t o r s , nurses and s o c i a l workers t o p r o v i d e c o u n s e l l i n g and support or t o make the r e f e r r a l s t o other p r o f e s s i o n a l s . S o c i a l workers may be i n the best p o s i t i o n t o make these connections. The s o c i a l work r o l e i s t o maintain and enhance famil y s o l i d a r i t y at a time of c r i s i s . S o c i a l workers r e g u l a r l y encourage communication among the f a m i l y members most d i r e c t l y i n v o l v e d , r e f e r people f o r s e r v i c e s , and p r o v i d e i n d i r e c t s e r v i c e by f o s t e r i n g the establishment of support groups. 60 (Osterweis, Solomon & Morris, 1984, p. 225) One aspect of the s o c i a l work r o l e that i s relevant to bereavement support i s that of resource finder. More than other health professionals, s o c i a l workers can as s i s t in strengthening community t i e s of the bereaved and decreasing the social i s o l a t i o n by providing them with the information about e x i s t i n g services and supports. Osterweis, Solomon & Morris (1984) mention that " . . . p r a c t i c a l support or counselling provided after a death should be responsive to the expressed concerns and needs of the bereaved" (p. 225). It was the desire to find out from the bereaved what they see as their needs, concerns and fears that led to the present study. The study combines the theoretical issues discussed in t h i s chapter which are relevant to the respondents. The e l d e r l y person experiencing bereavement after her spouse dies in an Extended Care Unit w i l l be a caregiver, w i l l have experienced anticipatory g r i e f , w i l l be influenced by access to or lack of social support and w i l l be coping with the s i t u a t i o n in her own way. The theoretical framework outlines what consideration was given to the questions 61 formulated for the i n t e r v i e w s . In the f o l l o w i n g chapter, the d e t a i l s of the study such as the p o p u l a t i o n , the procedure, and the methodology w i l l be o u t l i n e d i n more depth. CHAPTER THREE: METHODOLOGY 62 Research Design The purpose of the study was to i d e n t i f y the s i g n i f i c a n t a s p e c t s of bereavement i n the e l d e r l y e x p e r i e n c i n g spousal l o s s . The bereaved were s p e c i f i c a l l y mourning the death of a spouse who d i e d from a t e r m i n a l i l l n e s s . The deceased had a l l l i v e d at an Extended Care U n i t . The bereaved were a l l 65 years o l d and o l d e r . The goal of the study was t o d i s c o v e r concerns and i s s u e s about the pr o c e s s of bereavement that i s s p e c i f i c t o the e l d e r l y bereaved. The e l d e r l y respondents were questioned about t h e i r thoughts, f e e l i n g s and r e a c t i o n s about the p e r i o d immediately b e f o r e the death and the few months s i n c e the death of t h e i r spouse. T h i s was to a s c e r t a i n from the respondents what the r e l e v a n t i s s u e s or ex p e r i e n c e s were that i n f l u e n c e d t h e i r bereavement pr o c e s s . It was a l s o t o d i s c o v e r whether or not t h e i r e xperience i s d i f f e r e n t from younger bereaved s u b j e c t s , from whom most of the r e s e a r c h about bereavement has been 63 gathered. I wanted to hear from the e l d e r l y themselves what aspects of th e i r experience was similar to that found in theory, and was prepared to hear about issues that may not have been previously i d e n t i f i e d . I employed a q u a l i t a t i v e approach so that new ideas and concepts could emerge from the interviews with the e l d e r l y respondents. Open-ended questions were asked so as not to l i m i t answers to what has previously been found in other studies. Exploratory, in-person interviews were conducted with respondents between 1 and 7 months after the death of their spouse. This time frame was chosen so that the respondents' concerns during the i l l n e s s period as well as th e i r reactions since the death would s t i l l be fresh in th e i r memories. However, I was concerned about interviewing respondents early in the bereavement process. In order to a l l e v i a t e any negative e f f e c t s of the timing of the interviews, I engaged the respondents by explaining that they would be helping others by tal k i n g about th e i r experience. I also gave them encouragement during the interview, and I l e f t a l i s t of bereavement intervention resources for the respondents aft e r the interview (Patton, 1990). Patton 64 (1990) states that while interviews may be intrusive they can also be healing. I confirmed before meeting the respondents that a l l w i l l i n g l y participated. In fact, many expressed gratitude for a chance to freely talk about their experiences. The interviews which were approximately 1 1/2 hours were conducted at the e l d e r l y respondents' homes. Thought was given to making them as comfortable as possible and reducing anxiety about the interview process. S e n s i t i v i t y to the bereaved respondents during a personal l i f e c r i s i s , a vulnerable time in their l i v e s , was foremost in my mind. In addition, theoretical s e n s i t i v i t y was required to determine the questions to be asked during the interviews, during data c o l l e c t i o n and during data analysis. "Theoretical s e n s i t i v i t y refers to the personal qu a l i t y of the researcher. It indicates an awareness of the s u b t l e t i e s of meaning of data." (Strauss & Corbin, 1990). Information about the process of bereavement was gleaned from the l i t e r a t u r e , from my experience as a student at an Extended Care Unit, and from consultations with other professionals in the f i e l d . 65 Study P o p u l a t i o n and S e l e c t i o n The p o p u l a t i o n of the study was bereaved e l d e r l y spouses, men and women, aged 65 or o l d e r . A l l had l o s t a spouse from a te r m i n a l i l l n e s s w i t h i n the l a s t seven months. A l l the deceased had l i v e d at the Extended Care U n i t . The sample was a mixture of a v a i l a b i l i t y and p u r p o s i v e sampling. I n i t i a l l y , respondents were t o be r e c r u i t e d from one 300 bed Extended Care U n i t , attached t o U n i v e r s i t y H o s p i t a l , UBC S i t e . The d e s i r e d sample s i z e was between 8 and 10 e l d e r l y bereaved spouses. A sample s e l e c t i o n of at l e a s t 1/2 of the s u b j e c t s (4 or 5 respondents) i n the o l d to very o l d age group (80 years and over) was d e s i r e d . T h i s would have allowed f o r comparisons between responses of the very o l d to younger respondents (65 t o 80). S e l e c t i o n of the respondents went through the S o c i a l Work Department of the h o s p i t a l . I n d i v i d u a l s o c i a l workers i d e n t i f i e d bereaved spouses by checking t h e i r d i s c h a r g e s t a t i s t i c s f o r the l a s t 7 months t o i d e n t i f y a l l deceased r e s i d e n t s . If they were p e r s o n a l l y u n f a m i l i a r with the f a m i l y make-up of the deceased, they checked the medical c h a r t s t o see i f the 66 r e s i d e n t had a spouse. It was not a requirement that s o c i a l workers have p r i o r p r o f e s s i o n a l involvement with the respondents but t h i s proved t o be the case for the 8 respondents. An i n t r o d u c t o r y l e t t e r (Appendix A) was sent out from the s o c i a l workers at the Extended Care Unit accompanied by the r e s e a r c h e r ' s request f o r the respondents t o p a r t i c i p a t e i n the study. The s o c i a l workers followed up with a telephone c a l l . If the bereaved were w i l l i n g t o be interviewed, the s o c i a l worker then passed on t h e i r name and telephone number to the r e s e a r c h e r who c a l l e d the p a r t i c i p a n t and made an i n t e r v i e w appointment. Consent forms (Appendix B) were signed j u s t p r i o r t o the i n t e r v i e w . The f i r s t problem I encountered was the small a v a i l a b l e pool of e l d e r l y bereaved spouses t o c a l l upon. There appear t o be a number of f a c t o r s f o r t h i s which I underestimated b e f o r e commencing the study. F i r s t , females do l i v e longer than men by approximately 7 years. The number of females that are r e s i d e n t s of Extended Care U n i t s exceeds the male r e s i d e n c y r a t e . Second, the average age of the Extended Care Unit r e s i d e n t i s approximately 82 years o l d . T h i s means 67 that most females a r e a l r e a d y widowed b e f o r e e n t e r i n g the Extended Care Un i t because as p r e v i o u s l y ment ioned, 707. o f women aged 82 a r e widowed. T h i r d , the rema in ing v i s i t i n g spouses of Extended Care Un i t r e s i d e n t s would not n e c e s s a r i l y be bereaved d u r i n g the t ime of d a t a c o l l e c t i o n . There were a p p r o x i m a t e l y 3.1 dea ths per month in the 1990-1991 p e r i o d of d a t a c o l l e c t i o n . Many deceased a r e s u r v i v e d o n l y by t h e i r c h i l d r e n . Only 3 respondents were i d e n t i f i e d by the S o c i a l Work Department at the Extended Care Un i t at UBC S i t e , U n i v e r s i t y H o s p i t a l ( S i t e 1 ) . I then approached 4 a d d i t i o n a l l o c a l h o s p i t a l s who had Extended Care U n i t s b e f o r e I was a b l e t o s e c u r e 8 r e s p o n d e n t s fo r the s t u d y . The number of r espondents r e f e r r e d , p a r t i c i p a t i o n r a t e s and r e f u s a l r a t e s a r e l i s t e d below in T a b l e I. 68 TABLE I R e f e r r a l and P a r t i c i p a t i o n of Respondents Extended Care Unit Referrals Participated Refused Si t e 1 3 2 1 S i t e 2 3 2 1 S i t e 3 0 0 0 S i t e 4 4 0 4 S i t e 5 4 4 0 Worth noting in t h i s selection process i s that a l l r e f e r r a l s went through the social workers in the various Extended Care Units, thereby selection was influenced by s o c i a l workers' ethical decisions about "readiness" of respondents for p a r t i c i p a t i o n in the study. For example, at S i t e 1, S i t e 2, and S i t e 5 three social workers indicated they were aware of other bereaved spouses who were appropriate for the study but who they f e l t were not emotionally ready to p a r t i c i p a t e . This indicates the use of professional judgement and s e n s i t i v i t y to c l i e n t s but also raises questions about the bias of the sample towards those 69 who were perceived as coping with bereavement better than those who were not chosen. Also of interest i s that at Si t e 3, where I had no direct contact with the soc i a l workers at the Extended Care Unit but communicated only with the director of the Department, resulted in 0 r e f e r r a l s . A recent building move and a change in s t a f f were reasons given for lack of r e f e r r a l s . Again, perhaps professional judgement and protection of the c l i e n t during a vulnerable time could account for some reasons why there was a lack of r e f e r r a l s from t h i s source. In addition, s i t e 4 was the only s i t e which was a Nursing Home with both Intermediate Care beds and Extended Care beds combined. This may have some impact on the experience of bereavement, and high refusal rate to p a r t i c i p a t e . While not the intention of t h i s thesis, i t would be interesting to further study the general r e f e r r a l pattern, p a r t i c i p a t i o n rates, s o c i a l workers' perception of "readiness" to discuss bereavement and the implications for practice. F i n a l l y , the response rate for interviews was 8 out of 14i Of the 14 participants, one woman was cognitively impaired which necessitated stopping the 70 i n t e r v i e w e a r l y as i t was obvious she was not a b l e t o o f f e r i n s i g h t about her own bereavement p r o c e s s . T h i s woman's son was most i n t e r e s t e d i n p r o v i d i n g h i s p e r s p e c t i v e on the q u e s t i o n s asked but t h i s i n f o r m a t i o n was omitted from the data c o l l e c t i o n p rocess. The respondents were male and female, and ranged in age from 70 t o 85. A l l l i v e d at home or with other f a m i l y members except one woman who a l s o l i v e d i n the Extended Care Unit where her husband d i e d . A l l t h e i r spouses had a termi n a l i l l n e s s and had l i v e d i n the Extended Care Unit for over 2 months. The age and gender c h a r a c t e r i s t i c s of the sample are pro v i d e d i n Table 2. 71 TABLE 2 S u b j e c t s Age Gender #1 85 F emale #2 77 Hale #3 85 F emale #4 70 F emale #5 70 Female #6 85 Male #7 70 Female #8 70 F emale Table 3 p r o v i d e s i n f o r m a t i o n about the deceased such as length of i l l n e s s , type of i l l n e s s , l ength of time at the Extended Care U n i t ; and about the bereaved such as length of time e x p e r i e n c i n g bereavement. 72 TABLE 3 S u b j e c t s Years of Type of Stay at Bereavement I l l n e s s I l l n e s s ECU (In months) (In y r s . ) 1 9 Alzheimer's 1 1 2 10 Alzheimer's 1.5 7 3 7 Strokes .2 1 4 8 Parkinson's 2 4 5 6 S t r o k e s 5 5 6 10 Alzheimer's 3 5 7 10 A l c o h o l dementia 2 5 8 8 Parkinson's 1.5 4 Table 4 p r o v i d e s i n f o r m a t i o n about the bereaved such as l e n g t h of marriage, number of c h i l d r e n , and c u l t u r a l and socio-economic background which are a l l f a c t o r s i d e n t i f i e d i n the l i t e r a t u r e as being p e r t i n e n t t o s u c c e s s f u l outcome of bereavement. A l l s u b j e c t s were r e c r u i t e d from the west s i d e of Vancouver and the North and West shores. A l s o , s u b j e c t s 3 and 4 had s t e p - c h i l d r e n . Both d i d not c o n s i d e r these c h i l d r e n t h e i r own and f e l t they should not be i n c l u d e d i n the study as such. Both of 73 these bereaved respondents were i n f a c t estranged from these c h i l d r e n of the deceased. TABLE 4 S u b j e c t s Years of C h i l d r e n C u l t u r a l Income Marr iage Background Level (approx.> 1 54 1 German/Weish $10,000. 2 46 1 English-Can. $30-50,000. 3 20 0 English-Can. $30-50,000. 4 51 3 Eng./ I r i s h $10-20,000. 5 7 0 English-Can. $30-35,000. 6 33 0 E n g l i s h $30-50,000. 7 48 7 Canadian $10-20,000. 8 51 2 Dan i s h $10-20,000. Data C o l l e c t i o n A guided i n t e r v i e w (Appendix C) was the method of data c o l l e c t i o n . Interviews were h e l d at the homes of respondents, were audio-taped and as p r e v i o u s l y mentioned l a s t e d approximately 1 1/2 hours. A guided i n t e r v i e w schedule was s t r u c t u r e d u s i n g r e l e v a n t themes 74 about the g r i e f p r o c e s s from the l i t e r a t u r e , and from i n t e r v i e w s with s o c i a l workers who emphasized p r a c t i c e i s s u e s p e r t i n e n t t o c o n s i d e r when form u l a t i n g the q u e s t i o n s . Sanders' g r i e f e xperience i n v e n t o r y (1985) was reviewed and used as a framework for d i v i s i o n of q u e s t i o n s i n t o c a t e g o r i e s such as somatic responses or seeking support responses. Open-ended q u e s t i o n s were u t i l i z e d and as i n d i c a t e d by Patton (1990) served as a b a s i c c h e c k l i s t t o make sure a l l r e l e v a n t i s s u e s were covered d u r i n g the i n t e r v i e w . A l s o , 2 respondents were interviewed d u r i n g a p r e - t e s t . T h e i r comments, p a r t i c u l a r l y about the wording and meaning of words such as bereavement and c u l t u r a l background helped c l a r i f y the i n t e r v i e w q u e s t i o n s . The general i s s u e s addressed i n the i n t e r v i e w werei 1) demographic i n f o r m a t i o n about the bereaved — age, sex, number of c h i l d r e n , and type of i l l n e s s of spouse, 2) respondents' f e e l i n g s about t h e i r e xperience at the Extended Care U n i t , 3) events surrounding the death — access to i n f o r m a t i o n from s t a f f , presence at the death, and s e r v i c e s , 4) p h y s i c a l , emotional and b e h a v i o r a l r e a c t i o n s t o the death, 5) coping with the experience — p e r s o n a l i t y f a c t o r s , and b e l i e f s , and 6) 75 p e r c e p t i o n of support - f r i e n d s , f a m i l y members and s t a f f members from the Extended Care U n i t s . The guided i n t e r v i e w i s p r o v i d e d as Appendix "C". Data A n a l y s i s Based on grounded theory p r i n c i p l e s , I analysed the data by content. A l l the i n t e r v i e w s were t r a n s c r i b e d from the audio-tapes. Using open-coding, a x i a l - c o d i n g and memo t a k i n g , the c a t e g o r i e s and themes emerged from the data. Stauss and Corbin (1990) i n d i c a t e that even though a x i a l and open-ended coding are d i s t i n c t processes, the r e s e a r c h e r a l t e r n a t e s between the two modes. Responses were assessed by c o n s i d e r i n g the areas covered i n the guided i n t e r v i e w and then through l i n e - b y - l i n e open-coding f o r the f i r s t i n t e r v i e w . Subsequent i n t e r v i e w s were analysed by paragraphs and themes became e v i d e n t . Each theme was then separated on p o s t e r board and responses from each sub j e c t cut and paste under the theme. In t h i s way, i n s i g h t s and responses were separated i n t o the f i n a l themes that emerged, and the data f o r each respondent was c o l l e c t e d by theme. While t h i s q u a l i t a t i v e r e s e a r c h produced a 76 tremendous amount of data i n the form of hours of tapes, and many pages of t r a n s c r i b e d notes, the process of d i s c o v e r i n g theory from respondents' personal s t o r i e s was e x c i t i n g . Every spouse's s t o r y had s u b t l e t i e s and presented the p o s s i b i l i t y of new d i r e c t i o n s i n r e s e a r c h and theory development. The d i r e c t i o n of i n t e r v i e w q u e s t i o n s was shaped and o b v i o u s l y l i m i t e d t o some extent t o what has a l r e a d y been found in p r a c t i c e and r e s e a r c h . However, th e r e was enough f l e x i b i l i t y i n the process f o r respondents t o express an o p i n i o n or f e e l i n g d i f f e r e n t from that of p r e v i o u s work. As expressed by S t r a u s s & Corbin (1390) q u a l i t a t i v e r e s e a r c h i s a t o o l by which we gain more i n s i g h t and d e t a i l i n t o phenomena about which we a l r e a d y know: It can be used t o g a i n novel and f r e s h s l a n t s on t h i n g s about which q u i t e a b i t i s a l r e a d y known. Al s o , q u a l i t a t i v e methods can g i v e i n t r i c a t e d e t a i l s of phenomena that are d i f f i c u l t t o convey with q u a n t i t a t i v e methods. ( S t r a u s s and C o r b i n , 1990, p. 19) The e l d e r l y are a tremendous source of i n f o r m a t i o n and h i s t o r y . It seems that q u a l i t a t i v e methods of 77 r e s e a r c h are best s u i t e d for t h i s p o p u l a t i o n when e x p e r i e n c i n g the p a s s i n g of someone with whom they have o f t e n shared a l i f e t i m e . In the f o l l o w i n g chapter, the f i n d i n g s themselves w i l l a l l o w the reader to see the development of ideas i n the responses. The chapter i s organized i n t o f i n d i n g s and i n t e r p r e t a t i o n of f i n d i n g s so that each reader may apply h i s or her own i n t e r e s t and s k i l l i n contemplating a d i f f e r e n t d i r e c t i o n for the r e s e a r c h than I have taken. CHAPTER FOUR: FINDINGS 78 The f i n d i n g s of the study are from i n t e r v i e w s with r e c e n t l y bereaved spouses, male and female, aged 70 t o 85. A l l the respondents were bereaved w i t h i n 7 months of the i n t e r v i e w s . The bereaved respondents focused on s i m i l a r i s s u e s when r e l a y i n g t h e i r s t o r i e s , f e e l i n g s and thoughts. Some of t h e i r i s s u e s centered on the p e r i o d of i l l n e s s b e f o r e bereavement. When the bereaved t a l k e d about t h e i r e xperiences, s i m i l a r i t i e s i n t h e i r f e e l i n g s and concerns s u r f a c e d . Of importance to them were r e l a t i o n s h i p i s s u e s with t h e i r deceased spouse, f a m i l y members, and the p r o f e s s i o n a l c a r e g i v e r s . Major c a t e g o r i e s from the data w i l l be h i g h l i g h t e d c i t i n g examples from the i n t e r v i e w s as well as d i s t i n g u i s h i n g s u b - c a t e g o r i e s f o r each core category. Respondents w i l l be i d e n t i f i e d by gender and age a f t e r each q u o t a t i o n , f o r example (F-85) f o r a female s u b j e c t aged 85. To ensure c o n f i d e n t i a l i t y , i n i t i a l s of the respondents have been changed. In a d d i t i o n , the i d e n t i f y i n g i n f o r m a t i o n such as length and type of 79 i l l n e s s of the deceased and len g t h of st a y at Extended Care do not correspond t o other i d e n t i f y i n g data i n the Tables. The themes that emerged from the data are c a r e g i v i n g i s s u e s , a n t i c i p a t o r y g r i e f i s s u e s , a s p e c t s of the g r i e f p r o c e s s , coping with bereavement, and the pe r c e p t i o n and u t i l i z a t i o n of s o c i a l supports. Caregiving Issues Caregiving at Home The respondents became i n c r e a s i n g l y r e s p o n s i b l e for t h e i r spouse's w e l l - b e i n g d u r i n g t h e i r i l l n e s s . The t a s k s of c a r e g i v i n g i n c l u d e a myriad of d u t i e s f o r which spouses are o f t e n unprepared. T h i s e x t r a p h y s i c a l , emotional and f i n a n c i a l demand o f t e n r e s u l t s in exhaustion. C a r e g i v i n g begins with the f i r s t stages of d e b i l i t a t i o n caused by the d i s e a s e . At t h i s time the spouse i s s t i l l u s u a l l y l i v i n g at home. Comments made by the bereaved respondents i n d i c a t e they were exhausted, and found i t c h a l l e n g i n g t o keep t h e i r spouse at home. The p a r t i c u l a r way i n which exhaustion a f f e c t e d the bereaved spouses v a r i e d . T h i s woman found the s l e e p d i s t u r b a n c e most d i f f i c u l t . 80 I t ' s exhausting because I was up n i g h t s with him. <F-85) The f o l l o w i n g statement i s from a widow who found b e h a v i o r a l a s p e c t s of her husband's d i s e a s e s t r e s s f u l . She was a l s o s t r u g g l i n g with c o n f l i c t i n g demands of f u l l - t i m e employment and c a r e g i v i n g . I worked f o r a year a f t e r he had h i s s t r o k e the f i r s t time. I j u s t c o u l d n ' t stand i t at home. I t o l d you he screamed a l l the time at the end... but at home he was so cranky. (F-70) The emotional s t r e s s of c a r i n g for an i l l spouse whose needs i n c r e a s e with the i l l n e s s was a l s o evident i n the comment of another respondent. I guess I thought I c o u l d do i t myself...we had someone t o c l e a n the house...but he expected a l o t . . . h e had a very bad leg...and he j u s t needed a l o t of a t t e n t i o n ; and that s o r t of t h i n g . (F-70) Another respondent saw a change i n her marriage due t o c o n f l i c t s with her husband i n her r o l e as c a r e g i v e r . 8 1 Well, I j u s t couldn't handle i t . . . h e couldn't remember how many l a x a t i v e s he took and he sometimes took 3...and I was up with him a l l n i g h t . . . i t was g e t t i n g t o the p o i n t where we were beginning t o argue over t h i n g s . . . i t was hard to handle...I j u s t couldn't do i t . (F-70) Incontinence was mentioned as one i s s u e of c a r e g i v i n g that most spouses found p r o b l e m a t i c . As r e f l e c t e d by the f o l l o w i n g respondent, spouses compared t h i s i n t e r a c t i o n t o p a r e n t - c h i l d r e l a t i o n s h i p s . D ealing with i n c o n t i n e n c e as a personal c a r e r e s p o n s i b i l i t y remains untenable f o r some i n the m a r i t a l dyad. They t o l d me about i t (homemakers) but we j u s t s t r u g g l e d through...I guess I thought I c o u l d do i t myself...we had someone t o c l e a n the house...the i n c o n t i n e n c e was the hardest p a r t for me...because I had never had c h i l d r e n . (F-70) The two male respondents t a l k e d about the i n c r e a s e in r e s p o n s i b i l i t y of household t a s k s that were p r e v i o u s l y c o n s i d e r e d the domain of t h e i r wives. Mind you, T. g r a d u a l l y becoming i l l over the years I f i n a l l y took over a l l the cooking and making good meals fo r the both of us as long as she was here and always good meals fo r myself. (M-77) 82 As time went on she became l e s s a b l e t o cope with household a f f a i r s and I s t a r t e d t o do the cooking and g r a d u a l l y took over most t h i n g s . But t h a t ' s a l r i g h t . (M-85) It appeared to be a consensus among the respondents that homemaking s e r v i c e s were u s e f u l i n a s s i s t i n g with r o u t i n e s such as b a t h i n g . They a l s o enabled the spouse t o get a much needed break from the r e s p o n s i b i l i t i e s of c a r e g i v i n g . And with the homemaker I c o u l d get out for a couple of hours sometimes depending on how the buses ran. Then I had one day a month that they allowed me. (F-85) There are community s e r v i c e s such as a d u l t day c a r e c e n t r e s organized to help both the i l l person and the f a m i l i e s of persons with dementia-type i l l n e s s e s . They a s s i s t by p r o v i d i n g r e l i e f from c a r e g i v i n g and by o f f e r i n g s p e c i a l i z e d programs fo r the i l l person. U n l i k e homemaking s e r v i c e s , the adult day c a r e programs had not always been p e r c e i v e d as h e l p f u l by the respondents. One widow expressed her f e e l i n g s about the a d u l t day care her husband attended. 83 He came home a l l wet a couple of times so I c a l l e d them up and i t seemed l i k e they j u s t couldn't manage. If they asked him i f he wanted t o go to the bathroom he'd say no because he d i d n ' t want t o bother anybody. They wouldn't j u s t say I'm going t o take you t o the bathroom, so I j u s t stopped sending him back. So that made me s o r t of housebound. (F-85) The two widowers commented about t h e i r heed for a s s i s t a n c e . Both f e l t a h e s i t a t i o n as primary c a r e g i v e r s t o ask for a s s i s t a n c e . In f a c t , these two respondents appeared t o be very proud that they had managed well without much agency support. The f o l l o w i n g comments i l l u s t r a t e the s e r i o u s n e s s these widowers attached t o t h e i r c a r e g i v i n g d u t i e s . I never l e t her out of my s i g h t for the l a s t year. (M-85) I never asked f o r anyone t o help bathe her or anything. CM-77) 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 The d e c i s i o n to, i n s t i t u t i o n a l i z e t h e i r spouse was traumatic for a l l the bereaved respondents. The respondents f e l t g u i l t y about the d e c i s i o n . One reason for t h e i r g u i l t was the knowledge that t h e i r spouse would have o b j e c t e d had they been a b l e t o deci d e f o r 8 4 themselves. The f i n a l d e c i s i o n was made by a l l the respondents when the doctor i n d i c a t e d i t was time f o r them t o p l a c e t h e i r spouse i n a f a c i l i t y . One widow expressed the acknowledgement she r e c e i v e d from her p h y s i c i a n for what she had been doing as well as the encouragement t o contemplate f a c i l i t y placement. And i t became so d i f f i c u l t . . . a n d Dr. S. s a i d you've done t h i s as long as you can...you can't keep doing t h i s . . . p u t t i n g him i n pampers... (F-70) Another respondent p o i g n a n t l y t a l k e d about her s t r u g g l e with the d e c i s i o n t o p l a c e her husband i n a f ac i 1 i t y . Well, of course he di d n ' t ever want t o go i n t o a home...well, I couldn't do anything e l s e , I couldn't handle i t . And you can imagine how you fe e l when you have done i t ; I f e l t so g u i l t y when I put him i n t o the home; I was j u s t s i c k . But i t was what I had to do. That was almost harder on me than anything. Because I hated t o - I f e l t that I had desert e d him - which I had no other c h o i c e - and the doctor s a i d you've got to, you've got t o . (F-70) There are numerous f a c t o r s i n v o l v e d i n f a c i l i t y placement. Two r e a l i t i e s o f f a c i l i t y placement are the very short n o t i c e given t o f a m i l y members when a 85 f a c i l i t y vacancy occurs and long w a i t i n g l i s t s . However, the r e a d i n e s s of the spouse t o p l a c e t h e i r loved one i n a f a c i l i t y seems t o be the r e a l d e c i d i n g f a c t o r . Because of the g u i l t experienced when making 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 t h e i r spouse, many spouses keep t h e i r i l l husband or wife at home u n t i l many emotional and p h y s i c a l r e s e r v e s a re exhausted. A c o m p l i c a t i n g f a c t o r for the c a r e g i v e r i s when a f a c i l i t y vacancy does not c o i n c i d e with t h e i r emotional r e a d i n e s s t o p l a c e . One woman expressed how she decided t o keep her husband at home longer d e s p i t e the a v a i l a b i l i t y ' of a room f o r him. Well, I had help from the homemakers, but t h a t ' s where I got worn out. The doctor kept s a y i n g , "You b e t t e r have him w a i t l i s t e d " and I d i d have him w a i t l i s t e d and h i s name came up e a r l y and I s a i d I don't th i n k he's ready t o go i n t o a h o s p i t a l now so I c a n c e l l e d and then I d i d n ' t w a i t l i s t him again so they j u s t took him o f f the l i s t . So, I had t o w a i t l i s t him and t h a t ' s the reason i t took a while t o get him i n . (F-85) 86 C a r e g i v i n g i n the F a c i l i t y F a c i l i t y placement a l l e v i a t e s the c a r e g i v e r ' s r e s p o n s i b i l i t y for 24-hour a s s i s t a n c e wi th p e r s o n a l c a r e of s p o u s e s . However, spouses c o n t i n u e d c a r e g i v i n g d u t i e s i n o ther ways once t h e i r spouse was i n s t i t u t i o n a l i z e d . The r e s p o n d e n t s were s t i l l exhausted because they v i s i t e d f r e q u e n t l y and a s s i s t e d wi th f a c i l i t y r o u t i n e s such as m e a l s , d r e s s i n g and o u t i n g s . They o f t e n a s s i s t e d o t h e r r e s i d e n t s wi th t h e s e r o u t i n e s as w e l l . The r e s p o n d e n t s seemed t o f e e l d a i l y or f requent v i s i t s demonstra ted t h e i r l o v e and j commitment t o t h e i r s p o u s e s . The comment below i s from a woman who was in i l l h e a l t h but v i s i t e d t w i c e a day u n t i l she was p h y s i c a l l y u n a b l e t o do s o . And somet imes, I went t w i c e a d a y . . . b u t then I had t o have a h i p replacement and so I was out o f commission fo r a w h i l e . (F-85) The c o n n e c t i o n between r e l a t i o n s h i p and commitment by the f o l l o w i n g widower. commitment t o the t o v i s i t i s c l e a r l y s t a t e d 87 I s a i d I am not g o i n g t o c l o s e the door and fo rge t about h e r . Because I proved t o myse l f i t was r i g h t because I went every day . I never had any i l l n e s s . I never had a c o l d or missed a day or go ing out t o be wi th herj. (M-77) One bereaved spouse i n d i c a t e d that h i s d a i l y v i s i t i n g became a r o u t i n e and par t o f h i s l i f e . H i s r o u t i n e d i d not change for 3 y e a r s d u r i n g which he v i s i t e d h i s w i f e d a i l y . So every day for 3 y e a r s , I 'd get up at 5 o ' c l o c k , do my housework, my e x e r c i s e s , say my p r a y e r s and take o f f and go t o the h o s p i t a l . . . and I was t h e r e every day about h a l f past 7 and fed her b r e a k f a s t . . . (M-85) One respondent e x p r e s s e d the degree of p h y s i c a l e x h a u s t i o n she f e l t due t o ongoing r e s p o n s i b i l i t i e s of c a r e g i v i n g t o a spouse w h i l e i n s t i t u t i o n a l i z e d . I was g o i n g down t o the h o s p i t a l every second d a y . . . I used t o g o - o v e r sometimes so t i r e d I c o u l d h a r d l y get around and push h i s w h e e l c h a i r a r o u n d . (F-85) The s t a f f members at the Extended Care Un i t assumed r e s p o n s i b i l i t y for most p e r s o n a l c a r e t a s k s . However, spouses were c o n f r o n t e d wi th a new way of do ing t h i n g s from how they d i d them at home. T h i s 88 proved s t r e s s f u l for some of the s p o u s e s . The spouses tha t ment ioned c o n c e r n s about the c a r e were w o r r i e d about the adequacy of c a r e t h e i r husbands were r e c e i v i n g . As s t a t e d by the f o l l o w i n g widow, she i n i t i a l l y found d e a l i n g wi th a new system of c a r e g i v e r s a d i f f i c u l t s i t u a t i o n . I w o r r i e d whether they would put c l e a n c l o t h e s on h i m . . . a n d shave him p r o p e r 1 y . . . e t c . At f i r s t I d i d n ' t know how t o h a n d l e i t . . . i f he d i d n ' t have a\ c l e a n o u t f i t . . . s h o u l d I c o m p l a i n . . . b u t I l e a r n e d t o a d a p t . . . I put the c l o t h e s out so they had no excuse not t o change the c l o t h e s . . . <F-70> Three spouses t a l k e d about the r e l a t i o n s h i p s they found s t r e s s f u l w i th i n d i v i d u a l s t a f f members in the Extended Care U n i t s . These c o n f l i c t s were taken s e r i o u s l y by the bereaved r e s p o n d e n t s who f e l t i t may n e g a t i v e l y a f f e c t the c a r e t h e i r spouses r e c e i v e d . The f o l l o w i n g comment was made by a widow who f e l t her compla in t about a s t a f f member had i n f l u e n c e d her h u s b a n d ' s c a r e . The f i r s t year was b a d . . . i t was because one of the s t a f f I compla ined a b o u t . . . ( F - 7 0 ) 89 Another respondent a l s o f e l t her c o n f l i c t u a l r e l a t i o n s h i p wi th a s t a f f member on a p a r t i c u l a r f l o o r made i t harder for her t o n e g o t i a t e c a r e i s s u e s fo r her husband. I d i d n ' t l i k e him on s e c o n d . . . I d i d not l i k e the head n u r s e . . . a n d she d i d not l i k e m e . . . ( F - 7 0 ) Anger was mentioned as the r e a c t i o n t o most c o n f l i c t u a l r e l a t i o n s h i p s wi th s t a f f members at the Extended Care U n i t . One respondent went on t o deve lop p o s i t i v e r e l a t i o n s h i p s wi th most s t a f f members but had t h i s t o say about her i n i t i a l c o n t a c t s wi th the Extended Care Un i t s t a f f members: I was so angry at EC (Extended Care U n i t ) . . . I never l o s t my temper so much in 40 y e a r s of t e a c h i n g as I d i d in tha t f i r s t y e a r . . . ( F - 7 0 ) Summary of Caregiving Issues One of the consequences of the t e r m i n a l i l l n e s s on the spouses in the s tudy was tha t they w i t n e s s e d t h e i r l o v e d one d e t e r i o r a t i n g . D i s e a s e s which can p r o g r e s s s l o w l y and which i n c l u d e a dement ia such as A l z h e i m e r ' s 90 D i s e a s e had a s t r o n g emot iona l impact . Most spouses were i l l - p r e p a r e d fo r t h e i r husband or w i f e d y i n g in t h i s manner. They were not aware of the s t a g e s of the d i s e a s e nor o f what t o expect in the f u t u r e . The adjustment i n i t i a l l y came from the amount o f b e h a v i o r a l and l i f e s t y l e changes t o which they had t o become accustomed. Not o n l y d i d they have t o dea l w i th the b e h a v i o r a l changes that accompanied the d i s e a s e but a l s o wi th the s t r a i n of c a r i n g for an a d u l t ' s p h y s i c a l needs . The average amount of t ime that the r e s p o n d e n t s had been c a r e g i v e r s s i n c e the onset o f t h e i r s p o u s e s ' d i s e a s e was 8 .5 y e a r s . The r e s p o n d e n t s found t h i s e x p e r i e n c e e x h a u s t i n g . Dur ing t h i s t ime they were r e q u i r e d t o a t t e n d t o t h e i r s p o u s e ' s needs r e g a r d l e s s o f t h e i r own p h y s i c a l and emot iona l r e a c t i o n s t o the d i a g n o s i s . Without e x c e p t i o n , the r e s p o n d e n t s in the s tudy put t h e i r s p o u s e ' s needs b e f o r e t h e i r own. Another consequence of l o n g - t e r m c a r e g i v i n g e x p e r i e n c e d by many of the r e s p o n d e n t s was s o c i a l i s o l a t i o n . In t h i s c a s e , s o c i a l i s o l a t i o n meant reduced c o n t a c t w i th f a m i l y , f r i e n d s and community g r o u p s . The respondents i n c r e a s i n g l y withdrew from s o c i a l a c t i v i t i e s not o n l y due t o l a c k of t ime but a l s o fo r o ther f a c t o r s . F i r s t , t h e i r spouse was no longer we l l enough t o a t t e n d s o c i a l a c t i v i t i e s wi th them or they were u n c o m f o r t a b l e managing t h e i r b e h a v i o r in p u b l i c . Second , they chose t o s t a y home wi th t h e i r spouse and e v e n t u a l l y were r e q u i r e d t o as t h e i r spouse c o u l d not be l e f t a l o n e because of s a f e t y r i s k s . T h i r d , they d i d not know about the r e s o u r c e s a v a i l a b l e u n t i l we l l i n t o t h e i r s p o u s e ' s i l l n e s s . F o u r t h , they r e c e i v e d very l i t t l e r e l i e f from c a r e g i v i n g and when i t was p r o v i d e d i t was i n f r e q u e n t . O u t i n g s had t o be p lanned around the a v a i l a b i l i t y of homemaking s e r v i c e s . T h i s meant s o c i a l a c t i v i t i e s had t o c o i n c i d e wi th homemaking s c h e d u l e s which was not a lways p o s s i b l e . S o c i a l i s o l a t i o n i m p l i e s that the r e s p o n d e n t s had no s o c i a l c o n t a c t whatsoever . However, t h i s i s not q u i t e t r u e j u d g i n g from t h e i r comments. They were g r a d u a l l y i n t r o d u c e d i n t o another group of p e o p l e : the r e s i d e n t s of the Extended Care U n i t , o ther r e s i d e n t s ' f a m i l y members, and the p r o f e s s i o n a l c a r e g i v e r s . Some of t h e s e c o n t a c t s became s o c i a l in n a t u r e and p r o v i d e d a replacement of a community based s o c i a l network wi th one based in the medica l s e t t i n g . The focus of t h i s 92 contact was i n i t i a l l y on the i l l person, the d i s e a s e and medical s e r v i c e s . However, s u p p o r t i v e and more e x t e n s i v e r e l a t i o n s h i p s developed for some of the spouses from among t h i s new group. Nevertheless, these appeared t o be 1imited t o contact at the Extended Care U n i t . The respondents i n the study never intended t o p l a c e t h e i r spouse in a f a c i l i t y and found i t d i f f i c u l t t o do so even when t h e i r own r e s o u r c e s were exhausted and t h e i r spouse r e q u i r e d t o t a l c a r e with d a i l y r o u t i n e s . A l l the deceased had gone d i r e c t l y t o the Extended Care Unit from home or h o s p i t a l . None went to the Extended Care Unit from an Intermediate Care f a c i l i t y . There are numerous f a c t o r s which e x p l a i n the e l d e r l y spouses' r e l u c t a n c e t o p l a c e t h e i r husband or wife i n a f a c i l i t y . They f e l t a sense of duty and commitment t o take care of t h e i r m a r i t a l p a r t n e r ; they shared an outlook that f a c i l i t y placement meant abandonment. The respondents p r i m a r i l y valued the home s e r v i c e s ; these r e s o u r c e s a s s i s t e d them the most with t h e i r goal of keeping t h e i r spouse at home. The p h y s i c i a n was instrumental i n the respondents' d e c i s i o n t o p l a c e t h e i r spouse i n a f a c i l i t y . The 93 f i n a l d e c i s i o n was made when the p h y s i c i a n i n s i s t e d that t h e i r spouse be w a i t l i s t e d i f s t i l l at home or w a i t l i s t e d for an Extended Care Un i t a f t e r an e p i s o d e in the Acute Care H o s p i t a l . T h i s a l l e v i a t e d some g u i l t because the r e s p o n d e n t s b a s i c a l l y f e l t the f i n a l d e c i s i o n was out of t h e i r hands . G u i l t was not the o n l y f a c t o r a f f e c t i n g the r e s p o n d e n t s ' d e c i s i o n t o keep t h e i r spouse at home. The r e s p o n d e n t s d i d not want t o be s e p a r a t e d from t h e i r p a r t n e r s because of t h e i r own r e l a t i o n s h i p needs . I ssues of c o n t r o l and power run throughout the i s s u e s of c a r e g i v i n g in the s t u d y . The d i s e a s e removed power from the r e s p o n d e n t s as they l o s t t h e i r spouse due t o the many p h y s i c a l and b e h a v i o r a l changes tha t o c c u r r e d . With A l z h e i m e r ' s D i s e a s e , P a r k i n s o n ' s D i s e a s e and o t h e r l o n g - t e r m i l l n e s s e s , the r e s p o n d e n t s c o u l d a n t i c i p a t e some symptoms but each i l l i n d i v i d u a l w i l l not n e c e s s a r i l y have a l l the same symptoms or r e a c t i o n s t o the d i s e a s e and the m e d i c a t i o n s . T h i s meant the r e s p o n d e n t s c o u l d not p r e d i c t when h e a l t h changes would occur in t h e i r s p o u s e . Other a r e a s where the r e s p o n d e n t s e x p r e s s e d a f e e l i n g of power1essness was over the c a r e t h e i r spouse 94 r e c e i v e d at the Extended Care U n i t . The respondents were unsure how t o handle the c o n f l i c t s that arose i f they d i s a g r e e d with how c a r e was administered t o t h e i r spouses. They d i d not q u i e t l y accept the care i f they f e l t i t should be improved but were worried about the n e g a t i v e consequences t h i s may have on the c a r e t h e i r spouse r e c e i v e d . Most of the respondents were e v e n t u a l l y a b l e to accept the type and l e v e l of c are provided by the Extended Care Unit or decided to supplement the c a r e by p a r t i c i p a t i n g i n d a i l y r o u t i n e s themselves. T h i s i n i t i a l c o n f l i c t may be i n d i c a t i v e of s e v e r a l i s s u e s : 1) e x p e c t a t i o n s of care are u n r e a l i s t i c on the part of the spouse, 2) the Extended Care U n i t s are indeed u n d e r s t a f f e d and c a r e i s inadequate, or 3) other f a c t o r s such as p h i l o s o p h y of c a r e were not c l e a r l y understood by the respondents. However, the respondents' p e r c e p t i o n i n t h i s area i s that the i n i t i a l stage of placement at the Extended Care Unit was d i f f i c u l t . The spouses' r o l e at the Extended Care Unit was i n i t i a l l y c o n f u s i n g . On the one hand they were u l t i m a t e l y r e s p o n s i b l e for t h e i r spouse's w e l l - b e i n g and took t h i s s e r i o u s l y by a s s i s t i n g at feeding times, 1 95 v i s i t i n g r e g u l a r l y and s u p p l y i n g c o m f o r t s , c l o t h i n g and o ther m a t e r i a l n e c e s s i t i e s . On the o ther hand, they saw an environment where c a r e was not a lways a d m i n i s t e r e d the way they thought best and t h e r e was no forum for them t o e x p r e s s t h i s except on an i n d i v i d u a l b a s i s . The r e s p o n d e n t s e x p r e s s e d t h e i r f r u s t r a t i o n as t h e i r a t tempts at chang ing the d e l i v e r y of c a r e were not a lways we l l r e c e i v e d . T h i s c o u l d have been because they d i d not unders tand the c o m p l e x i t y of s t a f f i n g i s s u e s , they asked the wrong p e r s o n , t h e i r reques t was i n t e r p r e t e d as a compla in t and not passed a l o n g , or tha t s t a f f were unaware of s o l u t i o n s t o the p rob lem. It i s a l s o p o s s i b l e that spouses and s t a f f members had a d i f f e r e n t p e r c e p t i o n of what the r e s i d e n t needed. Another important i s s u e was the r e l a t i o n s h i p between the s p o u s e s . The m a r i t a l r e l a t i o n s h i p moved from a p r i v a t e r e l a t i o n s h i p in the home t o one l i v e d in p u b l i c at the Extended Care U n i t . I n t e r a c t i o n s between the r e s p o n d e n t s and t h e i r spouses were observed by a v a r i e t y o f s t a f f . What appeared t o happen in the c a r e g i v i n g r e l a t i o n s h i p in the Extended Care U n i t i s that the spouse became even more v i g i l a n t o f t h e i r s p o u s e s ' needs wi th the s t a f f and., because t h e i r spouse 96 was in a " h o s p i t a l " s e t t i n g . The f e e l i n g s o f abandonment tha t the spouses i n i t i a l l y f e l t about placement were assuaged by f requent v i s i t i n g and by the r e s p o n d e n t s ' involvement in c a r e i s s u e s . It was very important for the respondents that s t a f f members unders tood who t h e i r spouse had been as a p e r s o n . T h i s meant the r e s p o n d e n t s spent as much energy on c a r e g i v i n g in the f a c i l i t y as they had at home, a l though the n a t u r e of the c a r e g i v i n g t a s k s a l t e r e d somewhat in the f a c i l i t y . The next s e c t i o n w i l l e x p l o r e how a n t i c i p a t o r y g r i e f was e x p e r i e n c e d w h i l e the respondents were a l s o d e a l i n g wi th c a r e g i v i n g i s s u e s . Anticipatory G r i e f I ssues A n t i c i p a t o r y g r i e f was an e x p e r i e n c e shared by a l l the r e s p o n d e n t s . As p r e v i o u s l y ment ioned, t h e r e a r e many l o s s e s e x p e r i e n c e d p r i o r t o death for the bereaved spouse of someone wi th a t e r m i n a l i l l n e s s . The l o s s of a m a r i t a l p a r t n e r f i g u r e s among the most d i f f i c u l t . 97 Relat i o n s h i p Issues In a d e m e n t i a - t y p e i l l n e s s p e o p l e l o s e t h e i r a b i l i t y t o communicate and t o behave in the way they used t o in the m a r r i a g e . The bereaved spouses f e l t t h i s l o s s in a v a r i e t y of ways. They longed fo r the missed i n t e r a c t i o n and r e c o g n i t i o n from t h e i r spouse as we l l as b e i n g a b l e t o communicate. One widow e x p r e s s e d how p a i n f u l i t was t o r e a l i z e that her husband d i d n ' t even r e c o g n i z e her anymore. For the l a s t s i x months I'm not s u r e he a lways knew me when I came t h e r e . One day I came in and he s a i d , "Oh, y o u ' r e my former w i f e . . . " and that was h a r d . <F-70) As was common wi th a l l r e s p o n d e n t s , the spouses c o n t i n u e d t o communicate wi th t h e i r husband or w i f e even though they c o u l d not r e s p o n d . One widower found comfort in h i s w i f e ' s s o c i a l r e s p o n s e s t o o t h e r p e o p l e even though he was not s u r e what she unders tood from the c o n v e r s a t i o n s . You c o u l d t e l l when v i s i t o r s came and t a l k e d t o me that T. was r e l a t i n g t o what they were s a y i n g or how they t a l k e d even though she c o u l d n ' t speak . (M-77) 9B For the bereaved respondents whose spouse d i d not have a dementia i t was s t i l l d i f f i c u l t for them t o see t h e i r spouse i n the Extended Care U n i t . T h i s s i g n i f i e d a change and a l o s s i n the r e l a t i o n s h i p . One woman expressed i t t h i s way. Yes, t o have, t o put him i n that type of environment was a shame. Cause when he wasn't t a k i n g h i s s e i z u r e s and coming out of h i s s e i z u r e s he would become q u i t e r i g h t and we c o u l d t a l k and communicate and go out f o r dinner...and t h i n g s 1 ike t h a t . . . (F-70) Another aspect of l o s s f e l t by s e v e r a l of the respondents was that they had a l r e a d y g r i e v e d the l o s s of t h e i r spouse years b e f o r e because the dementia had changed them so d r a s t i c a l l y . The f o l l o w i n g comments r e f l e c t these f e e l i n g s . Even though she l e f t me years ago...(M-77) He was a t o t a l l y d i f f e r e n t person...(F-85) One widower t r i e d to e l a b o r a t e on the q u a l i t a t i v e d i f f e r e n c e between h i s spouse b e f o r e her i l l n e s s and a f t e r the onset of her dementia. 99 I have an idea that wi th A l z h e i m e r ' s t h e y ' r e l i k e a drugged p e r s o n . H a l f i n t o x i c a t e d or someth ing . CM-77) Preparation for Death P r e p a r a t i o n fo r death can come g r a d u a l l y fo r spouses d e a l i n g wi th a t e r m i n a l i l l n e s s . Some respondents and t h e i r deceased spouses had p r e v i o u s l y d i s c u s s e d what type of medica l i n t e r v e n t i o n s they would want near the t ime of t h e i r d e a t h s . T h i s had made them t h i n k about the p r o c e s s of d y i n g . O thers in the s tudy had smal l s c a r e s in the form of p r e v i o u s s t r o k e s tha t t h e i r spouses s u r v i v e d ; t h i s had p repared them for the idea tha t t h e i r spouse would d i e . A l l the spouses were d e a l i n g wi th a t e r m i n a l i l l n e s s and had some warning of d e a t h . In a d d i t i o n , a l l the bereaved ' in the s tudy had some p r e p a r a t i o n w i t h i n a day or two of the a c t u a l death e v e n t . E i t h e r the p h y s i c i a n , one of the n u r s e s or one of the s o c i a l workers had forewarned the respondents of the impending death of t h e i r s p o u s e . It was common for the respondents t o have p r e v i o u s l y d e c i d e d a g a i n s t a n t i b i o t i c s or any medica l i n t e r v e n t i o n t o p r o l o n g the l i f e of t h e i r s p o u s e . The 100 f o l l o w i n g example i l l u s t r a t e s t h i s spouse had a l r e a d y made h i s d e c i s i o n when t o l d by h i s w i f e ' s p h y s i c i a n that she had pneumonia. Dr . L . s a i d , "I'm g o i n g t o t e l l y o u , T . i s d e v e l o p i n g p n e u m o n i a . . . a n d I g i v e her t h r e e d a y s . . . and boy he was r i g h t o n . . . ( M - 7 7 ) Only one woman was not t o l d d i r e c t l y by a s t a f f member or p h y s i c i a n that her husband was c l o s e t o d e a t h . She had a f e e l i n g her husband was d y i n g because of h i s c o n d i t i o n but had t o i n i t i a t e c o n f i r m i n g t h i s h e r s e l f . T h i s woman's husband had o n l y been at the Extended Care Un i t fo r 2 months and she had not yet deve loped many r e l a t i o n s h i p s wi th the n u r s i n g s t a f f . So I s t o o d t h e r e u n t i l he looked up and s a i d , "Is my husband d y i n g , d o c t o r ? " and he s a i d , " W e l l , yes he i s . " . . . A n d I asked i f he c o u l d g i v e me any idea of how long he had; and he s a i d t h a t ' s d i f f i c u l t t o s a y , i t c o u l d be one day i t c o u l d be two d a y s . . . ( F - 8 5 ) One widower found the p h y s i c i a n s u p p o r t i v e in h i s d e c i s i o n not t o have any medica l t r e a t m e n t s a d m i n i s t e r e d . The f requency of the p h y s i c i a n ' s v i s i t s that week a l s o p repared him for the r e a l i t y o f h i s 101 w i f e ' s d e a t h . T h i s was a common o c c u r r e n c e . Oh, y e s , I knew i t was coming and tha t she was d e t e r i o r a t i n g . . . D r . U. came up s e v e r a l t imes that week and s a i d , " W e l l , you mustn ' t f o r c e feed her because her body i s wear ing out and i t ' s n a t u r e ' s way of s a y i n g tha t i t ' s t i m e . (M-85) The f e e l i n g s evoked in the d e c i s i o n t o not a d m i n i s t e r medica l t rea tments i n v o l v e s a p r o c e s s o f l e t t i n g go . One widow e x p r e s s e d her r e s o l u t i o n about the d e c i s i o n . And then on a n t i b i o t i c s the d o c t o r s a i d i t would go on and o n . . . s o I f e l t i t was a hard d e c i s i o n . . . b u t you have t o l e t g o . . . i t ' s not f a i r t o t h e m . . . a n d so I d i d you know. (F-85) One respondent t o l d about how her s t e p - c h i l d r e n d i d not accept the d e c i s i o n she had made wi th her spouse about not a d m i n i s t e r i n g medica l t r e a t m e n t s near the t ime of d e a t h . The p h y s i c i a n suppor ted the r e s p o n d e n t ' s wishes but the i n c i d e n t upset her t e r r i b l y . He ( the p h y s i c i a n ) e x p l a i n e d t o h i s son tha t i f he put him on i n t r a v e n o u s , he had to go t o the h o s p i t a l . . . and I d o n ' t t h i n k your dad i s g o i n g t o l a s t two d a y s . . . a n d he o n l y l a s t e d one hour a f t e r t h a t . (F-70) 102 Summary of Anticipatory Grief The r e s p o n d e n t s e x p e r i e n c e d a n t i c i p a t o r y g r i e f through c u r r e n t l o s s e s and. through p r e p a r a t i o n for f u t u r e l o s s e s . L o s s of p a r t n e r s h i p , communicat ion and the c h a r a c t e r i s t i c s of the pe rson they l o v e d f i g u r e d p r o m i n e n t l y among the most d i f f i c u l t of c u r r e n t l o s s e s . C o n f l i c t s in the m a r i t a l r e l a t i o n s h i p that had been present fo r y e a r s remained an i s s u e for s e v e r a l r e s p o n d e n t s . The respondents who had u n r e s o l v e d i s s u e s about the r e l a t i o n s h i p spent some energy in t r y i n g t o r e s o l v e t h e s e i s s u e s d u r i n g the l a s t s t a g e of t h e i r s p o u s e ' s i l l n e s s . If they were u n s u c c e s s f u l , they c o n t i n u e d wi th t h i s task in the g r i e v i n g p r o c e s s . These c o n f l i c t s were not a lways r e s o l v a b l e wi th the d e c e a s e d . In the s i t u a t i o n where the c o n f l i c t was u n r e s o l v a b l e wi th the d e c e a s e d , the respondents needed t o come t o some e x p l a n a t i o n of t h e i r own about the reason fo r the c o n f l i c t . A n t i c i p a t o r y g r i e f o c c u r r e d in s t a g e s . In a d d i t i o n t o some of the o ther f a c t o r s mentioned about r e l u c t a n c e t o p l a c e a spouse in a f a c i l i t y , the \ 103 r e s p o n d e n t s unders tood that placement i n d i c a t e d a s i g n i f i c a n t d e t e r i o r a t i o n in t h e i r s p o u s e ' s c o n d i t i o n . With the ongoing c a r e of t h e i r s p o u s e , thoughts of death were not a lways present but the r e s p o n d e n t s d i d accept that t h e i r spouses had a t e r m i n a l i l l n e s s from which they would not r e c o v e r . They a c c e p t e d tha t death would a l l e v i a t e t h e i r s p o u s e ' s s u f f e r i n g and d e t e r i o r a t i o n . The spouses saw t h i s as a r e l i e f t o the s i t u a t i o n for t h e i r i l l husband or w i f e . A number of f a c t o r s c o n t r i b u t e d t o t h e i r r e a l i z a t i o n of the even tua l death of t h e i r s p o u s e . Most of the spouses had d i s c u s s e d code i s s u e s wi th the p h y s i c i a n s so tha t they had d e a l t wi th t h e i r spouse d y i n g at a very c o n c r e t e l e v e l of d e c i d i n g that no medica l t reatment would be g i v e n near d e a t h . S e v e r a l r e s p o n d e n t s had e x p e r i e n c e d n e a r - d e a t h e p i s o d e s from which t h e i r spouses had r e c o v e r e d . What appeared t o be the a re a l e a s t a n t i c i p a t e d by the spouses was the e f f e c t s of t h e i r s p o u s e s ' death on t h e i r l i f e s t y l e . The a n t i c i p a t i o n of death d i d not p r e p a r e them for the r e a l i t y of the l o n e l i n e s s and f i n a l i t y of the m a r i t a l r e l a t i o n s h i p . The q u i n t e s s e n t i a l d i f f e r e n c e appeared to be in the 104 i n t e l l e c t u a l a c c e p t a n c e of l o s i n g t h e i r spouse t o the emot iona l r e a l i t y which was unab le t o be e x p e r i e n c e d b e f o r e i t s a c t u a l o c c u r r e n c e . Even though t h e i r l i f e s t y l e had r a d i c a l l y changed d u r i n g t h e i r s p o u s e s ' i l l n e s s , they were s t i l l i n v e s t e d in the r e l a t i o n s h i p wi th an i l l spouse by v i s i t i n g and by hav ing a task t o a c c o m p l i s h — c a r e g i v i n g . The death of t h e i r spouse s t r i p p e d them of a focus for t h e i r day and i n t e n s i f i e d t h e i r a l o n e n e s s . A n t i c i p a t o r y g r i e f e x i s t e d f o r the r e s p o n d e n t s in the form of p a i n in s e e i n g t h e i r s p o u s e ' s d a i l y c o n d i t i o n and u n d e r s t a n d i n g that t h e i r spouse death was n e a r . It a l l e v i a t e d some of the shock of t h e i r s p o u s e ' s death and in f a c t enab led them t o p a r t i c i p a t e in the death e v e n t . However, most respondents e x p r e s s e d f e e l i n g d i s b e l i e f a f t e r the death had o c c u r r e d even though they had e x p e r i e n c e d a n t i c i p a t o r y g r i e f . A n t i c i p a t o r y g r i e f appeared t o f a c i l i t a t e an a c c e p t a n c e of the death event which meant most r e s p o n d e n t s chose t o be t h e r e and were a b l e t o say t h e i r goodbyes . It a l s o may have enhanced t h e i r a b i l i t y t o move i n t o the g r i e v i n g s t a g e . 105 The G r i e f P r o c e s s The r e s p o n d e n t s d i s c u s s e d v a r i o u s a s p e c t s of the g r i e f p r o c e s s . As mentioned p r e v i o u s l y , the g r i e f p r o c e s s began d u r i n g the i l l n e s s . However, the g r i e f p r o c e s s d u r i n g bereavement had a f i n a l i t y and a q u a l i t a t i v e d i f f e r e n c e tha t i t d i d not have d u r i n g the i l l n e s s . The s u b - c a t e g o r i e s tha t emerged from the r e s p o n d e n t s a r e e i t h e r a s p e c t s of the g r i e f p r o c e s s or a re f a c t o r s tha t a f f e c t the g r i e f p r o c e s s d u r i n g bereavement a r e 1) the need t o say goodbye, 2) a v o i d a n c e , 3) s e p a r a t i o n and l o n g i n g , 4) c h a r a c t e r i s t i c s of the r e l a t i o n s h i p , 5) thoughts and f e e l i n g s s i n c e the d e a t h , 6) l o n e l i n e s s , and 7) p h y s i c a l symptoms. The Need t o Say Goodbye A l l the bereaved spouses e x p r e s s e d a s t r o n g need t o say goodbye. The apparent need i n c l u d e d wanting to be p resen t at the moment of d e a t h , t o make s u r e t h e i r spouse d i d not s u f f e r at the moment of death and t o i a c t u a l l y be a b l e t o say goodbye in some way. The absence of p a i n was important t o the spouses 106 when r e c o u n t i n g s i g n i f i c a n t e v e n t s of the a c t u a l d e a t h . The f o l l o w i n g comments i l l u s t r a t e the fac t tha t the r e s p o n d e n t s wanted t o know t h e i r l o v e d one d i e d p e a c e f u l l y . In the l a s t t o make i t e a s i e r for her they gave her oxygen. She very r a r e l y ever had t o have any p i l l s . . . So , I d o n ' t t h i n k , as fa r as I c o u l d f i g u r e , she d i d n ' t have p a i n . (M-77) Y e s , I d i d n ' t r e a l i z e i t was so c l o s e because he c o u l d n ' t t a l k and he c o u l d n ' t t e l l me a n y t h i n g , you know. . .whether he had any p a i n or a n y t h i n g . . . a n d she came back wi th the equipment and he j u s t s topped b r e a t h i n g . . . i t was ve ry p e a c e f u l . (F-85) She had s o r t of s topped b r e a t h i n g but she was s t i l l ve ry warm, and i t d i d n ' t worry me t o look at her and she looked so p e a c e f u l a f t e r a l l that s t r u g g l i n g . (M-85) He was gone and looked so p e a c e f u l , but you know of c o u r s e i t was very h a r d ; i t was hard t o l e a v e him 1 i k e t h a t . (F-70) I t h i n k i t was the way he would have wanted t o g o . . . h e j u s t s l i p p e d a w a y . . . w e l l the most important t h i n g was that he was c o m f o r t a b l e ; and tha t they thought of t h a t . . . a n d the d o c t o r had made him c o m f o r t a b l e a n d . . . (F-70) Only two r e s p o n d e n t s were not p resent at the moment of death and r e c e i v e d a phone c a l l the next day. One widow was most upset at not b e i n g p resen t and had 107 the same need t o know about the death event as t h o s e spouses who had been p r e s e n t . She put i t t h i s way: So I k i n d of wondered t o myse l f d i d he j u s t d i e and they found him d e a d . . . t h e nurse s a i d he passed away in h i s s l e e p . . . I ' m t r y i n g t o make myse l f b e l i e v e tha t because a n y t h i n g e l s e would be u p s e t t i n g . (F-85) Avoidance As i n d i c a t e d in the r e s e a r c h on bereavement , t h e r e a re common r e a c t i o n s in bereavement . One of the common r e s p o n s e s i s the i n i t i a l d i s b e l i e f that the death has o c c u r r e d . It appears that w i th a n t i c i p a t o r y g r i e f , t h i s r e a c t i o n i s s t i l l p r e s e n t . S e v e r a l of the r e s p o n d e n t s d e s c r i b e d f e e l i n g s of d i s b e l i e f that t h e i r spouses were gone. You know even though you expect i t . . . i t s o r t o f comes as a s u r p r i s e , i t ' s hard t o b e l i e v e . (F-85) I have t o keep remind ing mysel f that he i s gone. It d o e s n ' t seem r e a l . It has been so long and a l l o f a sudden he i s gone. (F-70) I fo rge t h e ' s gone s o m e t i m e s . . . t h a t ' s when I get d e p r e s s e d . I used t o watch fo r them b r i n g i n g him down the h a l l i n the morn ings . And I f i n d myse l f watching in the morn ings . (F-70) 108 S e p a r a t i o n and Longing The bereaved long for r e u n i o n wi th t h e i r loved one. T h i s l o n g i n g i s sometimes so s t r o n g that they sense the p r e s e n c e of t h e i r deceased s p o u s e . Whether the bereaved i n t e r p r e t f e e l i n g the p r e s e n c e of t h e i r deceased spouse as a dream or as a r e t u r n from the s p i r i t w o r l d , the e x p e r i e n c e i s common. Seven of the r e s p o n d e n t s had e x p e r i e n c e d the p r e s e n c e of t h e i r spouses s i n c e t h e i r d e a t h s . A p i c t u r e or f a m i l i a r o b j e c t o f t e n p r e c i p i t a t e d the f e e l i n g that the r e s p o n d e n t s were wi th t h e i r s p o u s e s . I do now every once in a w h i 1 e . . . s o m e t h i n g comes u p . . . a p i c t u r e of some t h i n g I h a v e n ' t seen fo r q u i t e a w h i l e . (F-70) Y e s , sometimes I even have a dream and I t h i n k s h e ' s in i t . (M-85) He was h e r e . . . j u s t as p l a i n as c o u l d b e . . . a n d that was such a n i c e f e e l i n g . . . s o I have that p i c t u r e s i t t i n g a r o u n d . . . ( F - 7 0 ) Y e s , yes I d o . But I f i g u r e i f I admit i t p e o p l e w i l l t h i n k I'm a b s o l u t e l y c r a z y . Her ashes a r e in the bed next t o me where she s l e p t for such a long t i m e . <M-77) There i s the C h r i s t m a s c a c t u s that was in the room where she was and I s t i l l water i t . I know that sounds s i l l y but I f e e l h e r t h e r e somehow.(M-77) C h a r a c t e r i s t i c s o f the R e l a t i o n s h i p 109 The p e r i o d of bereavement immediate ly a f t e r the death i s when the bereaved sometimes i d e a l i z e the l o s t person and r e l a t i o n s h i p . The m a j o r i t y o f the r e s p o n d e n t s d i d d i s c u s s a s p e c t s of t h e i r m a r i t a l r e l a t i o n s h i p or the c h a r a c t e r i s t i c s of t h e i r s p o u s e s . The r e s p o n d e n t s c h a r a c t e r i z e d t h e i r spouses as good p e o p l e wi th whom they had f u l f i l l i n g r e l a t i o n s h i p s . The r e s p o n d e n t s seemed t o f e e l that because the deceased had l e d good and happy l i v e s t h e r e was some meaning in t h e i r d e a t h s . I'm q u i t e happy w i th what we d i d wi th our l i v e s when we were a l i v e . <M-77) W e l l , the pr imary t h i n g that he lped me through i s my C h r i s t i a n f a i t h and because we had a m a r v e l l o u s t ime t o g e t h e r . We t r a v e l l e d t o g e t h e r and she was a wonderfu l person and t o the very end she was a p e a c e f u l p e r s o n . (M-85) She was never f r u s t r a t e d . . . she was never a n g r y . . . w e never had a q u a r r e l . . . w e had a good l i f e t o g e t h e r . ( M - 8 5 ) I'm j u s t t h a n k f u l that we had a good l i f e t o g e t h e r . See we met in h i g h s c h o o l . . . H e was a wonderful g u y . . . v e r y easy t o get a long w i t h . . . I was 14 and he was 17. (F-70) 110 Y e s , y e s . . . w e were so c l o s e . . . w e d i d e v e r y t h i n g t o g e t h e r . She was such a smart p e r s o n ; she spoke 4 languages and taught for y e a r s at the U n i v e r s i t y . . . a n d r i g h t up u n t i l the end i n the l a s t day or two we got back t o f eed ing her o n l y l i q u i d s , but when I k i s s e d her on the l i p s she k i s s e d me back . (M-77) • n e widow whose r e l a t i o n s h i p had been f raught wi th h a r d s h i p because of her h u s b a n d ' s a l c o h o l i s m , s t a t e d tha t at the end of t h e i r r e l a t i o n s h i p , they had become c l o s e r a g a i n . At t h i s p e r i o d in her bereavement , she too had a s t r o n g need t o unders tand or v a l i d a t e her m a r i t a l r e l a t i o n s h i p . I d o n ' t k n o w . . . f o r a l l t h o s e y e a r s tha t we hated each o t h e r . . . w e got back t o g e t h e r at the e n d . . . y o u know you k i n d of f a l l back in l o v e aga in fo r some r e a s o n . (F-70) Thoughts and F e e l i n g s S i n c e the Death Another aspect common i n the g r i e f p r o c e s s and e x p e r i e n c e d by s e v e r a l r e s p o n d e n t s were f e e l i n g s of c o n f u s i o n . They e x p r e s s e d how overwhelmed they were wi th the amount o f paperwork r e q u i r e d t o a p p l y for death b e n e f i t s and p e n s i o n s . S e v e r a l r espondents found t h i s t o be a burden at a t ime when they were e x p e r i e n c i n g g r i e f r e a c t i o n s of d i s t r a c t i o n and I l l con f u s i o n . I have so much t o do and I d o n ' t seem t o manage a l l that w e l l . <F-85) I was so b e f u d d l e d I c o u l d n ' t s i g n what I g o t . So i t was h e c t i c at f i r s t - I was r e a l l y b e g i n n i n g t o have doubts about my l i f e . (F-85) Other r e s p o n d e n t s a l s o f e l t t h e r e was a l o t of paperwork t o take c a r e of but found i t h e l p f u l t o have a focus and t o be a b l e t o c o n c e n t r a t e on something spec i f i c . Y e s , I thought i t was n e c e s s a r y work t o do and i t s o r t of kept me b u s y . (M-77) / It was h e l p f u l that I kept b u s y . I d i d n ' t t h i n k t h e r e was g o i n g t o be so much t o do . (F-85) The r e s p o n d e n t s ' t h o u g h t s about the f u t u r e c e n t e r e d on c o n c e r n s about money and the r e s u l t i n g c h o i c e s they had . One respondent who was l i v i n g wi th her daughter s a i d : W e l l , I have no money t o go a n y w h e r e . . . I h a v e n ' t brought up the s u b j e c t w i th my d a u g h t e r . I d i d n ' t expect t o l i v e t h i s l o n g . (F-85) Two o t h e r respondents e x p r e s s e d t h e i r wish not t o make any changes in t h e i r l i v e s at t h i s t i m e . I d o n ' t want to move. A l l my l i f e I ' ve moved and l e f t e v e r y t h i n g b e h i n d . (F-70) I'm p u t t i n g o f f making any major d e c i s i o n s for at l e a s t one y e a r . (F-70) Another common r e a c t i o n shared by r e s p o n d e n t s was a f e e l i n g of vas t amounts of u n s t r u c t u r e d t ime s t r e t c h i n g b e f o r e them. For y e a r s t h e i r t ime had been spent on c a r e g i v i n g at home or in the h o s p i t a l and they now were f e e l i n g a v o i d . A few r e s p o n d e n t s were s t i l l f e e l i n g e x h a u s t e d . I have been j u s t s o r t o f at a s t a n d s t i l l , w i th making t r i p s t o the h o s p i t a l , i t was p r e t t y t i r i n g and d e p r e s s i n g . Now I have n o t h i n g t o d o . (F-85) I'm not g o i n g out so m u c h . . . a t l e a s t when my husband was in the h o s p i t a l I went out eve ry day t o v i s i t h im. (F-85) I j u s t f e l t k ind of numb. You j u s t d o n ' t know what t o d o . You know you c a n ' t do a n y t h i n g . ( F -70) L o n e l i n e s s A l l the bereaved r e s p o n d e n t s t a l k e d about t h e i r l o n e l i n e s s . The company of o t h e r p e o p l e d i d not seem t o a l l e v i a t e the p a i n they f e l t when they longed for the company of t h e i r s p o u s e . Many of the r e s p o n d e n t s had become i n v o l v e d in o ther a c t i v i t i e s , had f r i e n d s and s u p p o r t i v e f a m i l y , and s t i l l e x p r e s s e d t h e i r f e e l i n g s of l o n e l i n e s s . Now, I ' ve got nobody t o t e l l t h i n g s t o . . . l i k e when I win at b i n g o . . . I go home and nobody i s t h e r e . (F-85) I'm j u s t s i t t i n g here a l o n e . (M-77) But now, I'm l o s t and lonesome. Now, when I walk i n , i t seems so s t i l l , but i t ' s no more s t i l l than b e f o r e , because he h a s n ' t l i v e d here for 3 y e a r s . ( F - 8 5 ) I used t o t a l k t o h i m . . . o r l a u g h . . . b u t now I c a n ' t . . . I miss h im. (F-85) One of the widowers was a b l e t o e x p r e s s h i s l o n e l i n e s s for h i s w i f e wi th a s t o r y about h i s l a s t h o l i d a y . Even though he e n j o y s the t ime he spends wi th h i s son and d a u g h t e r - i n - l a w he d e s c r i b e d the d i f f e r e n c e between t h e i r company and tha t o f h i s w i f e ' s . I guess that p a r t of my l i f e i s o v e r . You know, we used t o be l o o k i n g at the same t h i n g on h o l i d a y and my son and h i s w i f e a r e l o o k i n g at something t o t a l l y d i f f e r e n t t o what I am l o o k i n g a t . I t ' s j u s t not the same. (M-77) Physical Symptoms The p h y s i c a l symptoms tha t c o n s t i t u t e pa r t of the bereavement p r o c e s s can i n c l u d e s l e e p l e s s n e s s , weight g a i n or weight l o s s , d i a r r h e a , mental c o n f u s i o n and a n x i e t y . The r e s p o n d e n t s d i d not seem t o be p a r t i c u l a r l y bo thered by any of t h e s e symptoms and o n l y t h r e e r e s p o n d e n t s were a b l e t o r e p o r t any symptoms. I guess I get q u i t e n e r v o u s . . . I get the shakes every once in a w h i l e and somedays I j u s t c a n ' t c o n c e n t r a t e . . . A n d , I guess I was more t i r e d than I r e a l i z e d . . . I ' m not very hungry but my stomach i s empty. (F-70) I'm a w f u l l y t i r e d . W e l l , I t h i n k i t ' s k i n d of more of a mental s t r a i n r e a l l y than p h y s i c a l , of c o u r s e tha t can wear you down t o o . (F-85) S l e e p y , s l e e p y and d i a r h h e a . . . I went t o the d o c t o r and he s a i d i t was j u s t my nerves and he gave me something t o r e l a x me t o take whenever I need i t . . . ( F - 8 5 ) The bereaved spouses had a number of i l l n e s s e s that they d i d not i n i t i a l l y mention because they saw no c o n n e c t i o n t o t h e i r s p o u s e s ' death or t o the s t r e s s of 115 c a r e g i v i n g . I t ' s taken q u i t e a b i t out of me, but the pneumonia I had was q u i t e an experience, i t was v i r a l pneumonia. (F-70) I had developed a c a t a r a c t i n my l e f t eye which has been operated on. (M-77) I've seen her twice because I've had cancer; but i t has nothing t o do with h i s p a s s i n g . (F-70) I'm r e a l l y supposed t o go once a month because I have a heart problem and high blood p r e s s u r e . . . (F-85) I have problems with my mouth...I have u l c e r s i n my mouth...(F-70) S e r v i c e s / R i t u a l s The m a j o r i t y of the respondents chose not t o have a s e r v i c e , or to have a small p r i v a t e s e r v i c e . A l l the respondents f e l t they knew what t h e i r spouses' c h o i c e was i n t h i s regard, some having d i s c u s s e d i t as a couple. Yes, we had a p r i v a t e s e r v i c e at my daughter's place...we had planned t h i s ahead of time.(F-70) One widow d i d not d i s c u s s i t with her husband or make pl a n s b e f o r e h i s death because she f e l t t h i s would 116 have brought the r e a l i t y o f h i s impending death too c 1 o s e . The t h i n g I d i d n ' t t h i n k about though was j o i n i n g a memorial s o c i e t y . . . I s h o u l d have done t h a t , but I guess I needed t o look forward t o someth ing . It would have been l i k e a c c e p t i n g he was g o i n g t o d i e . (F-85) There were d i f f e r e n t r e a s o n s fo r c h o o s i n g not t o have a s e r v i c e as wi th the f o l l o w i n g widow who f e l t she s h o u l d honor her deceased h u s b a n d ' s w i s h . It was h i s c h o i c e not t o have o n e . . . I d i d n ' t r e a l l y m i n d . . . a l l h i s f r i e n d s had passed a w a y . ( F -85) R i t u a l s appeared t o i n v o l v e d few p e o p l e yet were the f i n a l ac t of s a y i n g goodbye and yet keep ing pa r t of the loved one wi th you . A l l the r e s p o n d e n t s had t h e i r spouse cremated and for them the r i t u a l became s p r e a d i n g the ashes of the d e c e a s e d . The r e s p o n d e n t s chose a l o c a t i o n the deceased had p a r t i c u l a r l y l o v e d or a l o c a t i o n they f requented as a c o u p l e . 117 They a r e not s c a t t e r e d . . . t h e y a re in a s e p a r a t e urn near the r o s e s . . . h e l o v e d r o s e s . . . ( F - 7 0 ) What I had in the back of my mind was t o spread her ashes i n L i t t l e Mountain Park because she used t o l i k e t o walk t h e r e . (M-77) I'm go ing t o take them up t o Indian Arm on M o t h e r ' s Day because we a lways used t o go t h e r e on s p e c i a l h o i i d a y s . ( F - 7 0 ) We spread them over the w a t e r . . . h e never wanted to be b u r i e d . (F-70) Summary of the Grief Process S a y i n g goodbye was the f i r s t s tep in the g r i e f p r o c e s s . Some r e s p o n d e n t s a c c o m p l i s h e d t h i s s e v e r a l days b e f o r e t h e i r spouse d i e d , at the t ime of d e a t h , or on t h e i r own a f t e r the d e a t h . A l l the r e s p o n d e n t s f e l t s t r o n g l y about t h i s . S a y i n g goodbye was one acknowledgement of the death of t h e i r s p o u s e . It p r e c i p i t a t e d a l l o ther s t a g e s . T h i s was p o i g n a n t l y i l l u s t r a t e d by the widow who spoke t o her husband through a s p i r i t u a l i s t a f t e r h i s d e a t h . She s t a t e d that a f t e r t h i s event which o c c u r r e d t h r e e weeks a f t e r her h u s b a n d ' s d e a t h , she was a b l e t o beg in g r i e v i n g . The r e l e a s e of t h e i r spouse from s u f f e r i n g was another i n g r e d i e n t that he lped the r e s p o n d e n t s accept 118 t h e i r s p o u s e ' s d e a t h . The r e s p o n d e n t s shared the b e l i e f that t h e i r spouse was b e t t e r o f f because they were no l o n g e r in p a i n , or demented and unab le t o commun i c a t e . D e s p i t e the long t ime of a n t i c i p a t o r y g r i e f e x p e r i e n c e d fo r the r e s p o n d e n t s , they n e v e r t h e l e s s went through o c c a s i o n a l avo idance and d e n i a l of the f a c t that t h e i r spouse was gone. What appeared t o t r i g g e r t h e s e o c c a s i o n s was the absence of the normal r o u t i n e , or t h e i r own f e e l i n g s of l o n e l i n e s s . It was at t h e s e t imes tha t they looked fo r t h e i r spouse i n a f a m i l i a r c o r r i d o r or f e l t t h e i r p r e s e n c e in the room. The m a j o r i t y o f the respondents d i d sense t h e i r deceased s p o u s e ' s p r e s e n c e on o c c a s i o n . T h i s gave them grea t comfort but most spouses were not s u r e how t h i s would be p e r c e i v e d by o t h e r s . S e n s i n g the p r e s e n c e of the deceased was another way of c o n t i n u i n g the r e l a t i o n s h i p wi th t h e i r spouse as we l l as a l l e v i a t i n g some of the a l o n e n e s s they were e x p e r i e n c i n g . Many of the r e s p o n d e n t s emphasized the p o s i t i v e a t t r i b u t e s of t h e i r spouses d u r i n g the i n t e r v i e w . It i s common for the newly bereaved t o i d e a l i z e the d e c e a s e d . These respondents t a l k e d about t h e i r spouses as i d e a l mates as we l l as i d e a l r e s i d e n t s at the Extended Care U n i t s . There were two r e s p o n d e n t s who e x p r e s s e d tha t ' t h e r e had been some t e n s i o n in t h e i r m a r i t a l r e l a t i o n s h i p . It was o b v i o u s tha t they were s t i l l d e a l i n g wi th the i s s u e s that had been p resen t in t h e i r mar r iage and were t r y i n g t o come t o some a c c e p t a n c e about t h e i r r o l e in t h e s e c o n f l i c t s . They both s t a t e d tha t they now b e l i e v e d they had done the bes t they c o u l d in the m a r r i a g e . Whether or not they in f ac t b e l i e v e d t h i s , i t was c l e a r they were t r y i n g t o l e t go of t h e s e i s s u e s and l a y them t o r e s t as w e l l . The r e s p o n d e n t s f e l t the absence of m a r i t a l i n t i m a c y in t h e i r l i v e s . Many were a c t i v e and had f r i e n d s and f a m i l y whom they saw. Even though many deceased had been unab le t o communicate for y e a r s , t h e i r p h y s i c a l p r e s e n c e had been enough t o i n h i b i t the t e r r i b l e f e e l i n g s of l o n e l i n e s s bereavement b r o u g h t . T h i s was e x p r e s s e d by a l l the respondents as most p a i n f u l and brought the most v i s i b l e emot ional r e s p o n s e d u r i n g the i n t e r v i e w . L o n e l i n e s s was enmeshed wi th l o n g i n g for t h e i r s p o u s e . Other p e o p l e cannot r e p l a c e the spousa l r e l a t i o n s h i p which fo r t h e s e r e s p o n d e n t s 120 was connected t o so many a s p e c t s of l i f e such as shared f r i e n d s , t r a v e l , v iews of the wor ld and e x p e r i e n c e s . Few o f the spouses had g i v e n much thought t o the f u t u r e except t o r e a l i z e tha t they had t o make new s o c i a l c o n t a c t s . Those who were l e s s f i n a n c i a l l y s e c u r e or had c o n f l i c t u a l r e l a t i o n s h i p s wi th f a m i l y upon whom, they were dependent were most w o r r i e d about t h e i r f u t u r e . An independent l i v i n g s i t u a t i o n was seen as d e s i r a b l e by most and a s i t u a t i o n a l l wanted t o m a i n t a i n as long as p o s s i b l e . Only one respondent a l r e a d y l i v e d in a f a c i l i t y and she saw t h i s as hav ing o c c u r r e d q u i t e i n d e p e n d e n t l y from her deceased h u s b a n d ' s i l l n e s s . The s t r e s s of an impending p h y s i c a l move was ve ry d i s t u r b i n g t o the two r e s p o n d e n t s for whom i t may have been n e c e s s a r y . The e f f o r t they f e l t the move would r e q u i r e appeared t o be more than they f e l t they had in r e s e r v e . For one woman the s t r e s s of b e i n g f i n a n c i a l l y dependent on her c h i l d r e n was c o m p l i c a t e d by o ther s t r e s s e s in the f a m i l y such as an i l l g r a n d c h i l d . S e v e r a l o f the r e s p o n d e n t s had h e a l t h p r o b l e m s . It was d i f f i c u l t t o de termine i f any of t h e s e had been e x a c e r b a t e d by c a r e g i v i n g or bereavement as the 121 respondents d i d not make any c o n n e c t i o n s between t h e i r i l l h e a l t h , s t r e s s or y e a r s of c a r e g i v i n g s t r a i n . S i n c e bereavement , o n l y one widow had seen her d o c t o r s p e c i f i c a l l y r e l a t e d t o g r i e f symptoms. One o t h e r widow had u l c e r s in her mouth which she r e l a t e d t o the s t r e s s she had been under d u r i n g her h u s b a n d ' s i l l n e s s . A l l o ther r e s p o n d e n t s downplayed any p h y s i c a l symptoms they had . There d i d not appear t o be a h i g h e r p r e v a l e n c e of v i s i t s t o p h y s i c i a n s or r e l i a n c e on m e d i c a t i o n by the respondents than they had p r e v i o u s t o t h e i r p e r i o d of bereavement . Perhaps the p h y s i c a l h e a l t h of r e s p o n d e n t s had been chang ing over the many y e a r s d u r i n g which they had been c a r e g i v i n g and was not sudden ly a f f e c t e d by bereavement . The p h y s i c a l s t r a i n of c a r e g i v i n g has a l r e a d y been mentioned and the h e a l t h of t h i s group of bereaved may have t o be moni tored over a longer p e r i o d of t ime t o o b s e r v e any d e c l i n e . S e r v i c e s and r i t u a l s were u t i l i z e d as the l a s t o c c a s i o n for formal goodbyes. The r e s p o n d e n t s who d i d not have c h i l d r e n wi th the deceased f e l t i t was important t o s h a r e t h i s event w i th t h e i r f r i e n d s or s i b l i n g s . S e r v i c e s were seen as an important t ime t o honor the d e c e a s e d , and t o s e c u r e t h e i r permanent 122 r e s t i n g p l a c e . A l l the deceased had been c remated , which meant the respondents" f i n a l f a r e w e l l was the r i t u a l o f s p r e a d i n g t h e i r s p o u s e ' s a s h e s . It appeared t o s i g n i f y the f i n a l act of l e t t i n g go and a c c e p t i n g the s e p a r a t i o n . One widow had not had a s e r v i c e which she appeared t o r e g r e t even though she f e l t she had adhered t o her deceased h u s b a n d ' s w i s h e s . One o t h e r widower had not yet d i s p o s e d of h i s w i f e ' s ashes and appeared t o be hav ing d i f f i c u l t l y in l e t t i n g go of the r e l a t i o n s h i p d e s p i t e h i s o b v i o u s re inves tment in o t h e r a c t i v i t i e s and p e o p l e . In the same way tha t s e r v i c e s and s p r e a d i n g the ashes were a f i n a l goodbye t o the d e c e a s e d , they were a l s o one way of i m m o r t a l i z i n g the d e c e a s e d . Ashes were spread over the o c e a n , at the r o o t s of a r o s e b u s h , on the g r a s s in a park and so o n . These were a l l symbols of the deceased s t i l l be ing par t of l i f e in another form. Another way t h i s was accompl ished by the r e s p o n d e n t s was formal t r i b u t e s in the form of p l a q u e s at the Extended Care U n i t , or hanging p a i n t i n g s done by the deceased in prominent p u b l i c p l a c e s . These r i t u a l s ensured that a par t of the deceased remained wi th the bereaved even i f through a c r a f t p r o j e c t or a p a i n t i n g . 123 The bereaved respondents went through many s t a g e s in the g r i e f p r o c e s s . How they coped wi th t h e s e s t a g e s w i l l be e x p l o r e d in the f o l l o w i n g s e c t i o n . Coping B e l i e f s Many of the respondents tu rned t o t h e i r r e l i g i o u s f a i t h d u r i n g bereavement . Not a l l were i n v o l v e d in a church or o r g a n i z e d r e l i g i o n but they d i d e x p r e s s a b e l i e f in at l e a s t p r a y i n g t o God. The r e s p o n d e n t s d i d not see themse lves as p a r t i c u l a r l y r e l i g i o u s but they d i d t u r n t o p rayer to g i v e them s t r e n g t h . I can a lways t u r n t o p r a y e r and i t ' s a lways worked for m e . . . a n d a l o t o f p e o p l e would say we l l you a re f o o l i s h or s o m e t h i n g . . . b u t t h a t ' s my b e l i e f . <F-85> W e l l , I go t o the P r e s b y t e r i a n Church and read my b i b l e . . . a n d wel l I read t h i s l i t t l e books ( r e l i g i o u s books) at n i g h t . . . b u t no , I'm not as r e l i g i o u s . . . a s I hope t o b e . . . ( F - 7 0 ) I t h i n k the fac t that I have some b e l i e f s . . . I have my f a i t h t o depend o n . . . n o t that my b e l i e f s a r e s t r o n g . (F-85) J u s t p r a y e r . . . p rayer has he lped me t h r o u g h . (F-70) 124 One of the respondents had s t r o n g l y deve loped C h r i s t i a n b e l i e f s . H i s s t r e n g t h came from p r a y e r as wel l as hav ing a c l e a r idea that h i s w i f e was l i v i n g in heaven. You s e e , t h i s i s the d i f f e r e n c e in b e i n g a C h r i s t i a n . Because she went t o heaven in the L o r d ' s good t i m e . She now has a new s p i r i t u a l b o d y . . . a l l d e f o r m a t i o n i s gone and she i s r e s t o r e d and she has a home in h e a v e n . . . i n our f a i t h . ( M - 8 5 ) The bereaved respondents who d i d not have s t r o n g r e l i g i o u s c o n v i c t i o n or who had no r e l i g i o u s c o n v i c t i o n d i d have some b e l i e f s about l i f e , death and an a f t e r 1 i f e . J u s t tha t p e o p l e have passed on b e f o r e . . . I b e l i e v e when you p a s s on that you see p e o p l e who have passed on b e f o r e . (F-85) Oh, I t h i n k I ' l l see him a g a i n . ( F - 8 5 ) W e l l , he was so s i c k and he wasn' t g o i n g t o get b e t t e r , so I had the a t t i t u d e that i t ' s not as sad as fo r somebody tha t i s younger for i n s t a n c e , and h a d n ' t had a chance t o l i v e y e t . (F-85) No, I'm q u i t e c o n t e n t . . . maybe s t u p i d l y . I'm not r e l i g i o u s at a l l and I t h i n k , I have the idea that when you d i e i t ' s j u s t l i k e g o i n g i n t o a b i g s l e e p that you d o n ' t wake up from.(M-77) 12 Act i v i t y The respondents f e l t that s o c i a l a c t i v i t y was h e l p f u l d u r i n g bereavement. The respondents who had many s o c i a l c o n t a c t s or f a m i l y involvement b e f o r e the death appeared to have an e a s i e r time a f t e r the death. Those who had become more i s o l a t e d d u r i n g the p e r i o d o i l l n e s s expressed more d i s c o n t e n t with t h e i r s o c i a l c o n t a c t s and a c t i v i t y . S everal respondents continued to v i s i t the Extended Care Unit as v o l u n t e e r s . T h i s enabled them t be a c t i v e and allowed them t o c o n t i n u e the r e l a t i o n s h i p s they began d u r i n g t h e i r spouses' s t a y there. I kept going back to the h o s p i t a l t o do my v o l u n t e e r work and spoke with the nurses and a l l that stuff.(M-77) I help with the s o c i a l a c t i v i t i e s t h e r e s t i 1 1 . . . because that i s where G. & I. spent a l o t of time i n the garden.(F-70) 126 Summary o f C o p i n g The two p r imary ways the respondents coped wi th the death of t h e i r spouse were through t h e i r b e l i e f s and through i n c r e a s e d or c o n t i n u e d a c t i v i t y . B e l i e f s i n v o l v e d r e l i g i o u s f a i t h or b e l i e f s about death in g e n e r a l . Those p e o p l e who had r e l i g i o u s f a i t h were a b l e t o r e l y on t h i s f a i t h , on p r a y e r and sometimes on o t h e r s who shared t h e s e b e l i e f s . R e l i g i o u s b e l i e f s he lped e x p l a i n the d e a t h , t o g i v e them s t r e n g t h t o endure the g r i e f p r o c e s s and t o g i v e them g u i d a n c e . T h i s d i f f e r e d from those who d i d not have r e l i g i o u s b e l i e f s in tha t t h o s e wi thout r e l i g i o u s c o n v i c t i o n o n l y r e l i e d on t h e i r b e l i e f s t o e x p l a i n the death and the s t a g e s of l i f e . They c o u l d not t u r n t o the s c r i p t u r e s for d i r e c t i o n or t o prayer fo r s t r e n g t h . Respondents who were a c t i v e wi th o t h e r p e o p l e were e q u a l l y r e p r e s e n t e d from those who had r e l i g i o u s c o n v i c t i o n and from t h o s e who d i d n o t . The r e s p o n d e n t s who were a c t i v e had been a c t i v e b e f o r e t h e i r s p o u s e ' s death and had remained a c t i v e . H a l f the r e s p o n d e n t s were a c t i v e w i th church g r o u p s , v o l u n t e e r work, and s o c i a l o u t i n g s t o t h e a t r e and a r t shows. I n a c t i v e respondents had been s o c i a l l y i s o l a t e d 127 for some t ime and had not yet sought out new c o n t a c t s or a c t i v i t i e s . The i n a c t i v e widows v e r b a l i z e d t h e i r d e s i r e t o do so but for one reason or another d i d not know where t o go or d i d not have the energy or r e s o u r c e s at that t ime t o do s o . They a l s o saw a c t i v i t y as b e i n g secondary t o f i n i s h i n g the t a s k s r e q u i r e d d u r i n g the bereavement p e r i o d such as p e n s i o n a p p l i c a t i o n s or f i n a n c i a l management. The four i n a c t i v e r e s p o n d e n t s had o c c a s i o n a l s o c i a l c o n t a c t wi th a f r i e n d or f a m i l y member. S o c i a l Support Systems The r e s p o n d e n t s saw t h e i r s o c i a l suppor t systems as a c o m b i n a t i o n of h e l p f u l and s t r e s s f u l . A l l the r e s p o n d e n t s f e l t that f a m i l y s h o u l d p r o v i d e suppor t even in t h o s e i n s t a n c e s where t h i s had not o c c u r r e d . When f a m i l y members had not v i s i t e d the bereaved r e s p o n d e n t s , t h e r e was sadness about the l a c k of p e r c e i v e d suppor t from f a m i l y . 128 Family There was an e x p e c t a t i o n tha t f a m i l y members s h o u l d be t h e r e for the b e r e a v e d . Be ing t h e r e meant a n y t h i n g from v i s i t i n g i f f a m i l y members l i v e d out o f town t o accompanying the bereaved on s o c i a l o u t i n g s i f they l i v e d nearby . The f o l l o w i n g s ta tements i d e n t i f y the r e s p o n d e n t s ' p o s i t i v e f e e l i n g s about the importance of fami 1 i e s . T h a t ' s a l o t t o be t h a n k f u l f o r . . . because t h e r e a r e so many f a m i l i e s t h a t . . . a r e b i c k e r i n g and you know and we s o r t o f gave h i s t h i n g s and whoever wanted t h e m . . . a n d i t a l l worked out w e l l . (F-70) They take me out and c a l l and I have r e a l l y got a wonderful f a m i l y . . . m y daughte rs and g r a n d c h i l d r e n and s o n - i n - l a w s . . . I r e a l l y am l u c k y . ( F - 7 0 ) We are so c l o s e , my s i s t e r and I . . .my k i d s a re O.K . t o o . . . b u t my d a u g h t e r - i n - l a w has been w o n d e r f u l . . . she comes t o get me j u s t t o go s h o p p i n g . . . ( F - 7 0 ) Oh y e s , the g i r l s a r e w o n d e r f u l . . . j u s t coming t o see me. (F -70 ) C o n f l i c t s or d i s a p p o i n t m e n t s in the r e l a t i o n s h i p that a r o s e d u r i n g the i l l n e s s sometimes i n f l u e n c e d the bereaved in s e e k i n g suppor t from that p e r s o n . T h i s widow was r e f l e c t i n g her f e e l i n g s that her f a m i l y l e t her down d u r i n g her h u s b a n d ' s h o s p i t a l i z a t i o n p e r i o d . 129 I t h i n k I 've expressed i t t o them, but they d o n ' t want t o hear i t . . . i t goes over t h e i r h e a d s . . . b u t I o f t e n wonder what w i l l happen i f they a r e in the same b o a t . . . whether I w i l l be t h e r e for them. I d o n ' t know i f I want t o spend next C h r i s t m a s wi th the fami 1 y . . . C F - 8 5 ) One common s o u r c e of d isappo in tment for the bereaved r e s p o n d e n t s was i f they f e l t t h e i r c h i l d r e n had not been s u f f i c i e n t l y i n v o l v e d w h i l e the deceased was s t i l l a l i v e . The r e s p o n d e n t s sometimes e s t i m a t e d t h i s by the f requency of v i s i t i n g or the t i m i n g of c e r t a i n q u e s t i o n s . But when L . was b e i n g o p e r a t e d on they wanted t o know what was in t h e i r d a d ' s w i l l . . . and I wou ldn ' t t e l l t h e m . . . I s a i d r i g h t now i t ' s none of your b u s i n e s s . (F-70) But over the y e a r s I s topped t a l k i n g about T . wi th them because I thought they would t h i n k t h a t ' s a l l t h i s guy ever wants t o t a l k about . He s a i d what a r e you g o i n g t o do about T. I do not t h i n k in that r e s p e c t I got too much h e l p from our s o n . I found him t o be a l i t t l e o f f - h a n d and s o r t of i t ' s up t o me and not wanting t o be too much i n v o l v e d when T. was a l i v e . (M-77) 130 F r i e n d s Because some r e s p o n d e n t s o n l y had f a m i l y members l i v i n g e lsewhere or had no s u r v i v i n g f a m i l y , they r e l i e d on f r i e n d s fo r s o c i a l s u p p o r t . F r i e n d s met t h e i r needs for in t imacy and s o c i a l a c t i v i t y . The respondents a p p r e c i a t e d tha t t h e i r f r i e n d s were s u p p o r t i v e and l i s t e n e d t o them when they needed t o t a l k about t h e i r f e e l i n g s . I have my church t o depend o n . . . i t has meant a l o t t o me tha t my s o r o r i t y and my church were t h e r e t o suppor t me. (F-70) T h i s f r i e n d , she phones me p r e t t y much every day , or e l s e I phone h e r . And her husband passed away about 6 or 7 y e a r s ago and she s a y s i t never goes away. <F-85) I do t h i n k the more p e o p l e you t a l k t o the b e t t e r , because I get b o t t l e d up , and you need t o get i t out.<F-85> I be long t o a B i b l e s tudy group and I have a l o t of f r i e n d s . . . a n d t h i s makes a wor ld of d i f f e r e n c e . <M-85) P r o f e s s i o n a l s Some r e s p o n d e n t s d i d not want t o r e t u r n t o the Extended Care U n i t . For some t h i s was too p a i n f u l and too f r e s h a reminder of t h e i r deceased s p o u s e . The m a j o r i t y of bereaved r e s p o n d e n t s f e l t that the / 131 p r o f e s s i o n a l s they had c o n t a c t w i th a f t e r the death had been ve ry h e l p f u l . T h i s c o n t a c t i n c l u d e d s e v e r a l s o c i a l workers who a s s i s t e d the bereaved in f i l l i n g out the r e q u i r e d forms and t a l k i n g about the g r i e f p r o c e s s . Y e s , the d o c t o r s and s o c i a l workers a re ve ry h e l p f u l . P e o p l e are very h e l p f u l . (M-85) W. ( S o c i a l Worker) has been very h e l p f u l . . . s h e i s my f r i e n d . ( F - 7 0 ) I wrote a l e t t e r t o the A d m i n i s t r a t i o n t e l l i n g them how wonderful X. (Head Nurse) was and she c a l l e d t o thank me fo r the l e t t e r . ( F - 7 0 ) The r e s p o n d e n t s who were a b l e t o r e t u r n t o the Extended Care Un i t a f t e r t h e i r spouse d i e d r e c e i v e d suppor t from some s t a f f members. What was e x p r e s s e d by r e s p o n d e n t s was that the s t a f f members at the Extended Care Un i t knew the deceased and t h i s was one p l a c e they were a b l e t o d i s c u s s t h e i r s p o u s e . Y e s , they a lways ask me about h im. (F-70) The s t a f f came up t o me a f t e r w a r d s . , and they s t i l l do when I go u p . . . t h e y ' r e a lways g l a d t o see me. (F -70 ) I went back t h e r e t o do my v o l u n t e e r work and the s t a f f and W. ( S o c i a l Worker) a l l spoke t o me. (M-77) 132 Y e s , I can t a l k about Y. t h e r e . We were f i x i n g up fo r the pub n i g h t and one of the l a d i e s in the A c t i v i e s s a i d Y. would l i k e t h i s wou ldn ' t he , and I s a i d , "He s u r e w o u l d " . ( F - 7 0 ) Bereavement Counsel1inq None of the r e s p o n d e n t s f e l t they needed c o u n s e l l i n g d u r i n g t h e i r bereavement . They d i d i d e n t i f y s e v e r a l a r e a s where they had needed p r a c t i c a l a s s i s t a n c e and had r e c e i v e d i t . The r e s p o n d e n t s e x p r e s s e d o n l y p o s i t i v e f e e l i n g s toward the s o c i a l worker . S e v e r a l r e s p o n d e n t s i d e n t i f i e d the s o c i a l worker as the person w i th whom they would wish t o speak i f they f e l t they needed bereavement c o u n s e l l i n g i n f u t u r e . Responses were mixed as t o what would be h e l p f u l t o them at t h i s t ime wi th o n l y two r e s p o n d e n t s s a y i n g they would l i k e t o meet wi th o ther bereaved p e o p l e . A bereavement suppor t group appea led t o o n l y one of the r e s p o n d e n t s but not i f i t was o f f e r e d at the Extended Care U n i t . Some of the comments r e s p o n d e n t s made about bereavement c o u n s e l l i n g i n c l u d e d the f o l l o w i n g : I 'd r a t h e r see the s o c i a l worker a l o n e . ( F - 7 0 ) 133 I d i d n ' t know the s o c i a l worker c o u l d do t h a t . ( F -70) S o c i a l Workers s h o u l d know where t o a p p l y fo r the p e n s i o n and a l l t h a t . ( F - 7 0 ) I would be i n t e r e s t e d i n meet ing p e o p l e in the same p o s i t i o n (o ther w idows) . (F -85 ) Summary of S o c i a l Supports The bereaved respondents r e l i e d on f a m i l y and f r i e n d s fo r s u p p o r t . They p e r c e i v e d suppor t as p r o v i d i n g f i n a n c i a l a s s i s t a n c e , i n v i t i n g them t o s o c i a l e v e n t s , and l i s t e n i n g when they needed t o t a l k . Three r e s p o n d e n t s had no c h i l d r e n and d i d not immediate ly i d e n t i f y f a m i l y as the p e o p l e they turned t o for s u p p o r t . When q u e s t i o n e d f u r t h e r they d i d say t h e i r s i b l i n g s were s u p p o r t i v e but they r e l i e d on f r i e n d s whom they saw more r e g u l a r l y . Most of the r e s p o n d e n t s t a l k e d p e r i o d i c a l l y about t h e i r deceased spouse but d i d o f t e n t a l k about the s t a g e s of the g r i e f p r o c e s s that they were g o i n g t h r o u g h . A l l the r e s p o n d e n t s had at l e a s t one f r i e n d or f a m i l y member wi th whom they c o u l d share t h i s i n f o r m a t i o n . The respondents who found t h e i r f a m i l y members h e l p f u l were r e f e r r i n g t o t h e i r c h i l d r e n . Three r e s p o n d e n t s d i d not have any c h i l d r e n , or d i d not 134 p e r c e i v e t h e i r s t e p - c h i l d r e n as s u p p o r t i v e . Three r e s p o n d e n t s found t h e i r c h i l d r e n very h e l p f u l w i t h : emot iona l s u p p o r t , p r a c t i c a l a s s i s t a n c e and encouragement t o s o c i a l i z e . These t h r e e r e s p o n d e n t s r e l i e d p r i m a r i l y on t h e i r c h i l d r e n for t h e s e a s p e c t s of s u p p o r t . Two r e s p o n d e n t s f e l t l e t down by t h e i r c h i l d r e n when the deceased was s t i l l a l i v e . They were c r i t i c a l of t h e i r involvement in r e g a r d s t o v i s i t i n g and a s s i s t a n c e wi th c a r e g i v i n g . These two r e s p o n d e n t s were l e s s l i k e l y t o seek t h e i r c h i l d r e n out t o g a i n suppor t fo r t h e i r f e e l i n g s of g r i e f . Three of the r e s p o n d e n t s who had c o n t i n u e d v o l u n t e e r i n g at the Extended Care Un i t were a b l e t o t a l k about t h e i r spouses wi th s t a f f members t h e r e as we l l as wi th o ther r e s i d e n t s . T h i s a s s i s t e d them wi th t h e i r g r i e v i n g as they were a b l e t o t a l k about the spouse they l o s t wi th i n d i v i d u a l s who knew the d e c e a s e d . The importance of t h i s v o l u n t e e r involvement was in keep ing busy , in b e i n g in the environment where they had e s t a b l i s h e d a r o u t i n e and knew many p e o p l e , and in be ing a b l e t o t a l k about the deceased when they needed t o . A l l the respondents f e l t keeping busy was a good 135 idea but had v a r y i n g c o n c e p t s about what t h i s meant. As p r e v i o u s l y ment ioned, t h r e e respondents c o n t i n u e d some involvement wi th the Extended Care U n i t , and two wi th t h e i r c h u r c h . The o t h e r r e s p o n d e n t s were unsure how t o get i n v o l v e d s o c i a l l y and where t o go t o do s o . They e x p r e s s e d a d e s i r e t o engage in s o c i a l a c t i v i t y that took t h e i r mind o f f t h e i r bereavement such as bus t r i p s or o u t i n g s wi th o t h e r p e o p l e . None of the r e s p o n d e n t s f e l t they needed c o u n s e l l i n g t o h e l p them wi th t h e i r bereavement . They were unaware of the s t a g e s of the g r i e f p r o c e s s , the purpose of bereavement c o u n s e l l i n g and the r e s o u r c e s a v a i l a b l e t o them. Two of the respondents were i n t e r e s t e d i n bereavement suppor t groups run by o ther bereaved i n d i v i d u a l s and f e l t they would a t t e n d i f they were h e l d at a l o c a t i o n s e p a r a t e from the Extended Care U n i t . These two i n d i v i d u a l s f e l t i t would be h e l p f u l t o meet wi th o ther bereaved p e o p l e who had gone through what they were e x p e r i e n c i n g as w e l l as p r o v i d i n g them wi th a p l a c e they c o u l d t a l k about how they were f e e l i n g . None of the r e s p o n d e n t s had a t tended any type of bereavement i n t e r v e n t i o n program. A l l the r e s p o n d e n t s had c o n t a c t wi th the s o c i a l ( ( 136 workers at the Extended Care Un i t a f t e r the death of t h e i r s p o u s e . Three of the bereaved f e l t the s o c i a l workers had been p a r t i c u l a r l y h e l p f u l t o them wi th c o n c r e t e a s s i s t a n c e such as f i l l i n g out a p p l i c a t i o n s . They a l s o e x p r e s s e d g r a t i t u d e at r e c e i v i n g emot iona l suppor t b e f o r e bereavement from t h e s e s o c i a l workers . They s t a t e d they would c o n s i d e r s e e k i n g out t h e s e i n d i v i d u a l s i f they needed any more a s s i s t a n c e . The r e s p o n d e n t s f e l t that s u p p l y i n g i n f o r m a t i o n about the bereavement p r o c e s s or about the g r i e f p r o c e s s b e f o r e the death of t h e i r spouse would have been i n a p p r o p r i a t e . They f e l t they would not have been r e c e p t i v e t o t h i s i n f o r m a t i o n at that t i m e . 137 Limitations of the Study Age-Related Issues One of the problems of the s tudy i s tha t I d i d not d i r e c t l y ask the r e s p o n d e n t s about age i s s u e s . T h i s i s s u e was approached by r e v i e w i n g the l i t e r a t u r e on younger p e o p l e e x p e r i e n c i n g bereavement , f o r m u l a t i n g q u e s t i o n s d i r e c t e d at t h e s e i s s u e s and then a s k i n g the e l d e r l y t o answer these q u e s t i o n s . A b e t t e r way t o e x p l o r e the i s s u e of a g e - r e l a t e d f a c t o r s in bereavement would have been t o d i r e c t l y ask the r e s p o n d e n t s what a g e - r e l a t e d f a c t o r s they f e l t p l a y e d a r o l e in t h e i r bereavement . Coping Coping was p o o r l y d e f i n e d in the s t u d y . The s e c t i o n on c o p i n g in the q u e s t i o n n a i r e was l i m i t e d and d i d not a d e q u a t e l y cover c o p i n g s t y l e s , c o p i n g s k i l l s or s t r e n g t h s and weaknesses of c o p i n g . The q u e s t i o n s p e r t a i n i n g t o c o p i n g in the q u e s t i o n n a i r e can be found under the f o l l o w i n g c a t e g o r i e s : a c t i v i t y l e v e l s , suppor t s y s t e m s , b e l i e f s and p h y s i c a l h e a l t h . I n t e r n a l c o p i n g mechanisms were m i n i m a l l y e x p l o r e d through q u e s t i o n s p e r t a i n i n g t o the e l d e r l y ' s p e r c e p t i o n of 138 t h e i r p e r s o n a l i t y . T h i s whole a rea of c o p i n g needed t o be e l a b o r a t e d upon s t a r t i n g wi th a d e f i n i t i o n of c o p i n g as t h e r e a re many ways of l o o k i n g at c o p i n g such as a d a p t a t i o n , s t r e s s management and so o n . It i s a d i f f i c u l t a re a t o a d d r e s s as i n q u i r i e s about a l c o h o l and drug usage may be seen as i n t r u s i v e by t h i s p o p u l a t i o n and yet can be n e g a t i v e c o p i n g b e h a v i o r s . H e a l t h Concerns It i s very d i f f i c u l t t o a n a l y z e the r e s p o n d e n t s ' s u b j e c t i v e r e p o r t i n g of t h e i r h e a l t h s t a t u s . They may not want t o c o m p l a i n . T h e i r p e r c e p t i o n of h e a l t h may be d i f f e r e n t from that o f the next pe rson i n t e r v i e w e d . The r e s p o n d e n t s may not be a b l e t o remember symptoms they had that may i n d i c a t e a more s e r i o u s i l l n e s s . They may a l s o m i n i m a l i z e t h e i r own h e a l t h problems as they have been around the t e r m i n a l l y i l l as a s o u r c e of c o m p a r i s o n . The respondents have a l s o been l o n g - t e r m c a r e g i v e r s , r e s p o n s i b l e for o t h e r s ' needs , not t h e i r own and t h e r e f o r e may not be in tune wi th t h e i r own h e a l t h i s s u e s . 139 Summary of Age—Related F i n d i n g s The L a s t S tage of G r i e f Some of the f i n d i n g s p a r t i c u l a r l y r e l a t e d t o age a re l o n e l i n e s s , p h y s i c a l symptoms, c a r e g i v i n g i s s u e s , s e n s i n g the p r e s e n c e of t h e deceased and r e l i g i o u s b e l i e f s . Seven of the r e s p o n d e n t s . f e l t the p r e s e n c e of t h e i r deceased s p o u s e . These r e s p o n d e n t s s t a t e d that they e x p e r i e n c e d e i t h e r s e e i n g the deceased in the room, h e a r i n g t h e i r v o i c e through another p e r s o n , hav ing a dream in which t h e i r s p o u s e ' s p r e s e n c e was very r e a l , or s e n s i n g the p r e s e n c e of t h e i r spouse through an inan imate o b j e c t such as a p i c t u r e . A l l the r e s p o n d e n t s had f e l t comfort and p l e a s u r e when one of t h e s e e v e n t s o c c u r r e d . A l l the e l d e r l y r e s p o n d e n t s f e l t that t h e i r r e l a t i o n s h i p wi th the deceased was the l a s t romant ic or l o v e r e l a t i o n s h i p they would e x p e r i e n c e in l i f e . When they d i s c u s s e d l o n e l i n e s s , they were t a l k i n g about m i s s i n g the i n t i m a c y of the m a r i t a l r e l a t i o n s h i p . They were aware tha t t h e r e was more t o d e a l i n g wi th l o n e l i n e s s than r e p l a c i n g the l o s t m a r i t a l r e l a t i o n s h i p wi th the company of o t h e r p e o p l e and s o c i a l a c t i v i t y . 140 The m a r i t a l r e l a t i o n s h i p i s q u a l i t a t i v e l y d i f f e r e n t than o ther r e l a t i o n s h i p s even a f t e r a l o n g - t e r m i l l n e s s . In t h i s r e g a r d , s e n s i n g the deceased may p r o v i d e comfort t o the g r i e v i n g s p o u s e . They may want to hang on t o the deceased through an o b j e c t or c o n t i n u e t o t a l k wi th them i f they f e e l t h e i r p r e s e n c e in the room. In the g r i e f p r o c e s s of younger r e s p o n d e n t s , t h o s e under 65 y e a r s of age , p i n i n g and l o n g i n g for the deceased sometimes r e s u l t s i n t h e i r s e n s i n g the p r e s e n c e of the d e c e a s e d . In the l i t e r a t u r e on g r i e v i n g , Vo lkan (1981) s t a t e s tha t e x p e r i e n c e s where the bereaved sense the decease in o b j e c t s can be seen as asymptomatic g r i e f , or as u n r e s o l v e d g r i e f which would i n d i c a t e a need for c o u n s e l l i n g . S e n s i n g the p r e s e n c e of the deceased may not be an i n d i c a t i o n of maladjustment in the e l d e r l y even i f i t c o n t i n u e s f o r a longer p e r i o d of t ime than in younger r e s p o n d e n t s g i v e n the e l d e r l y ' s p e r s p e c t i v e on the f i n a l i t y of tha t s t a g e in t h e i r l i f e . In most t h e o r i e s of the g r i e f p r o c e s s , the l a s t s t a g e i s r e i n v e s t m e n t , i m p l y i n g a new sense of commitment and a re inves tment o f energy i n t o a new r e l a t i o n s h i p . L o p a t a ' s (1973) d e f i n i t i o n of widowhood s t a t e s tha t t h e r e i s nowhere for the e l d e r l y t o go a f t e r the r o l e o f widow. L o p a t a ' s (1973) t h e o r y and the r e s p o n d e n t s ' p e r c e p t i o n of t h e i r l o s s o f a m a r i t a l p a r t n e r i n d i c a t e that we may need another d e f i n i t i o n fo r the f i n a l s t a g e of the g r i e f p r o c e s s in the e l d e r l y . New d e f i n i t i o n s of re inves tment as a f i n a l s t a g e of g r i e f may a l s o be needed t o f u r t h e r e x p l o r e how the e l d e r l y do meet t h e i r emot iona l needs i f they do not engage in o t h e r i n t i m a t e r e l a t i o n s h i p s or a c t i v i t i e s . P h y s i c a l Symptoms T h i s p a r t i c u l a r group of e l d e r l y bereaved have endured enormous p h y s i c a l demands. It was s u r p r i s i n g tha t the r e s p o n d e n t s d i d not make more c o n n e c t i o n s between t h e i r h e a l t h c o n d i t i o n s and t h e i r y e a r s o f c a r e g i v i n g and recen t bereavement . A number o f bereaved d i d have h e a l t h problems such as a hear t c o n d i t i o n , c a t a r a c t s , u l c e r s o f the mouth, and a t h r i t i s . These f i n d i n g s a r e perhaps not s i g n i f i c a n t i n tha t they a re from an e a r l y s t a g e of bereavement in most r e s p o n d e n t s . They a r e a l s o s u b j e c t i v e r e p o r t s o f / 142 t h e i r p h y s i c a l c o n d i t i o n to which t h e r e i s l i t t l e t o compare about a p o s s i b l e d e c r e a s e in h e a l t h s t a t u s . The d e c r e a s e in h e a l t h s t a t u s of o ther l o n g - t e r m c a r e g i v e r s i n measurable terms would a l s o s e r v e as a good compar ison for the r e s p o n d e n t s in t h i s s t u d y as t h e i r medica l c o n d i t i o n s c o u l d p o s s i b l y be connected t o s t r e s s or p h y s i c a l demands of c a r e g i v i n g on the e l d e r l y in t h i s way. R e l i g i o u s B e l i e f s The e l d e r l y r e s p o n d e n t s coped wi th the l o s s wi th a s t r o n g r e l i g i o u s i d e o l o g y . T h i s i s a s i g n i f i c a n t a g e -r e l a t e d f i n d i n g as the e l d e r l y as a group have more r e l i g i o u s i n d i v i d u a l s r e p r e s e n t e d among them. S i x of t the r e s p o n d e n t s c l e a r l y f e l t t h e i r r e l i g i o u s c o n v i c t i o n s had a s s i s t e d them in the bereavement p e r i o d . Another f i n d i n g s was the r e s p o n d e n t s ' a c c e p t a n c e of the death of t h e i r spouse because of t h e i r s t a g e in the l i f e c y c l e . T h i s may have been enhanced by the y e a r s they l i v e d wi th t h e i r s p o u s e ' s t e r m i n a l i l l n e s s but none of the r e s p o n d e n t s f e l t death had come too soon or that they c o u l d not accept death as a n a t u r a l 143 c o u r s e of e v e n t s . D i f f e r e n c e s i n Age Groups There were t h r e e r e s p o n d e n t s in the s tudy aged 85. As t h i s was not f e l t t o be a s u f f i c i e n t number t o base group c o m p a r i s o n s , the r e s p o n s e s were not s e p a r a t e d by age . However, two d i f f e r e n c e s were e v i d e n t between the female r e s p o n d e n t s aged 85 and younger r e s p o n d e n t s . The two female respondents aged 85 d i d e x p r e s s more e x h a u s t i o n , weep iness , and f e e l i n g s of be ing overwhelmed than d i d the younger r e s p o n d e n t s . The two r e s p o n d e n t s who were 85 year o l d females were a l s o more e x p r e s s i v e of b e i n g d e p r e s s e d than the younger r e s p o n d e n t s . The 85 year o l d widower was a c t i v e l y r e d e c o r a t i n g h i s condominium, was p r o v i d i n g suppor t t o o t h e r b e r e a v e d , was a c t i v e in h i s c h u r c h , and had no h e a l t h p r o b l e m s . Perhaps Parkes (1981) i s c o r r e c t in i d e n t i f y i n g tha t the o l d e r bereaved male may be in b e t t e r p h y s i c a l h e a l t h than h i s mar r ied c o h o r t . 144 Summary o f Gender R e l a t e d F i n d i n g s Responses fo r male and female r e s p o n d e n t s were not c o l l e c t e d s e p a r a t e l y as t h e r e were o n l y two male r e s p o n d e n t s , aged 77 and 85. The age gap between the two men and the smal l number would have made the compar ison between female and male r e s p o n s e s d i f f i c u l t . In f a c t , t h e r e appeared t o be l i t t l e d i f f e r e n c e between the female and male r e s p o n d e n t s in t h e i r bereavement p r o c e s s . The few d i f f e r e n c e s that d i d emerge appeared to be most o b v i o u s in t h e i r d e s c r i p t i o n s of t h e i r y e a r s of c a r e g i v i n g . They i n d i c a t e d more p r i d e in managing the househo ld and the c a r e g i v i n g t a s k s by themse lves than d i d t h e i r female c o u n t e r p a r t s . Both male r e s p o n d e n t s a l s o e x p r e s s e d tha t they p r o v i d e d a s s i s t a n c e t o o t h e r s in the Extended Care U n i t . They p a r t i c u l a r l y f e l t they had been h e l p f u l t o o t h e r c a r e g i v e r s around i s s u e s of f i n a n c e s and emot iona l s u p p o r t . None of the female r e s p o n d e n t s s t a t e d tha t they had a s s i s t e d o t h e r s in t h i s p r o c e s s . In the f o l l o w i n g C h a p t e r , I d i s c u s s the i m p l i c a t i o n s of the f i n d i n g s fo r v a r i o u s a s p e c t s of s o c i a l work p r a c t i c e , p o l i c y and r e s e a r c h . 145 CHAPTER FIVE: IMPLICATIONS The e l d e r l y bereaved who l o s e t h e i r spouse in the Extended Care Un i t o f t e n b e g i n g r i e v i n g p r i o r to the death of t h e i r s p o u s e . D e s p i t e the emot iona l d i f f i c u l t y of l o s i n g t h e i r s p o u s e , they a l s o endure ongoing f a t i g u e and e x h a u s t i o n . T h i s i s due t o the l ack of s e r v i c e s and a s s i s t a n c e t o them b e f o r e the death or even b e f o r e f a c i l i t y p lacement . S e r v i c e s a re c u r r e n t l y p r o v i d e d by Long Term Care in the community and at the Extended Care Un i t by a number of s t a f f members, i n c l u d i n g s o c i a l workers . An i n c r e a s e in a s s i s t a n c e t o t h i s p o p u l a t i o n must be addressed by changes in p o l i c y as community Long Term Care a s s e s s o r s and Extended Care Uni t s o c i a l workers a l r e a d y have l a r g e c a s e l o a d s . Pol i c y I s s u e s The most s t r e s s f u l t imes for respondents d u r i n g the c a r e g i v i n g phase of t h e i r s p o u s e ' s t e r m i n a l i l l n e s s was w h i l e t h e i r spouse was s t i l l at home and at the b e g i n n i n g of t h e i r s t a y at the Extended Care U n i t . 1 4 6 What would be of a s s i s t a n c e to the e l d e r l y bereaved p r i o r t o bereavement would a l s o a s s i s t a l l Extended Care Unit r e s i d e n t s and t h e i r f a m i l i e s . However, the e l d e r l y spouses c o u l d b e n e f i t from s e r v i c e s s p e c i f i c a l l y t a r g e t e d t o take t h e i r needs i n t o account. T h i s group may be at increased r i s k for the development of p h y s i c a l i l l n e s s i f we combine the r i s k f a c t o r s a s s o c i a t e d with bereavement, the s t r e s s of c a r e g i v i n g and age. The f o l l o w i n g s uggestions for p o l i c y changes use a pr e v e n t i v e approach t o s e r v i c e s . They suggest p r o v i s i o n of s e r v i c e s t o o f f e r r e l i e f during a d i f f i c u l t l i f e event. Such s e r v i c e s may prevent more s e r i o u s r e p e r c u s s i o n s during the bereavement p e r i o d . A s h i f t in p o l i c y to the p r o v i s i o n of p r e v e n t i v e s e r v i c e s may a l s o be f i s c a l l y b e n e f i c i a l i n the long run. The p o l i c y changes are d i r e c t e d at home s e r v i c e s and f a c i l i t y placement. Homemaking S e r v i c e s The o p t i o n s of care p r o v i s i o n t o d e b i l i t a t e d s e n i o r s are inadequate t o allow many s e r i o u s l y i l l s e n i o r s to stay i n t h e i r homes. Increased home 147 s e r v i c e s to the i l l e l d e r l y and spouses who are c a r e g i v e r s c o u l d take many forms. 1) There c o u l d be an i n c r e a s e in homemaking hours to allow c a r e g i v e r s t o have a break. Time a l l o t m e n t s should be increased to permit the spouse t o pursue p u r e l y s o c i a l a c t i v i t i e s i n s i t u a t i o n s where th e r e i s an absence of f r i e n d s or other f a m i l y members who can assume the care of the i l l person from time t o time. T h i s would reduce the p h y s i c a l exhaustion and the s o c i a l i s o l a t i o n f e l t by many e l d e r l y c a r e g i v e r s . 2) Trained c o u n s e l l o r s c o u l d be h i r e d to work i n the community with the e l d e r l y c a r e g i v e r . These c o u n s e l l o r s could p r o v i d e support for the emotional changes that e l d e r l y spouses are going through i n d e a l i n g with the i l l n e s s and with the g r i e f process. In a d d i t i o n t o the assessment provided by Long Term Care a s s e s s o r s , these c o n s u l t a n t s could p r o v i d e c o u n s e l l i n g around i s s u e s of a n t i c i p a t o r y g r i e f i n h e l p i n g the e l d e r l y spouse understand some of the d a i l y i s s u e s of l o s s they are e x p e r i e n c i n g . They co u l d a l s o act as a l i a i s o n to other community s e r v i c e s such as community s e r v i c e s for s e n i o r s , a d u l t day care programs and mental h e a l t h programs. They could a l s o begin 148 working wi th f a m i l i e s in s i t u a t i o n s where t h e r e a r e u n r e s o l v e d c o n f l i c t s in the goal of d e v e l o p i n g f u t u r e s u p p o r t s for the e l d e r l y b e r e a v e d . 3) These c o n s u l t a n t s c o u l d p r o v i d e bereavement f s e r v i c e s i f the i l l spouse d i e d b e f o r e placement or c o u l d become i n v o l v e d d u r i n g the bereavement p r o c e s s a f t e r a death in an Extended Care U n i t . They c o u l d work c l o s e l y wi th h o s p i t a l and Extended Care Un i t s o c i a l workers t o i d e n t i f y newly bereaved e l d e r l y s p o u s e s . They c o u l d a l s o act as l i a i s o n s t o bereavement s e r v i c e s a l r e a d y e s t a b l i s h e d in the community. 4) F i n a n c i a l i n c e n t i v e s t o f r i e n d s or n e i g h b o u r s in the community c o u l d be e x p l o r e d to encourage t h e s e i i n d i v i d u a l s t o c o n t i n u e p r o v i d i n g suppor t such as shopping and making mea ls . T h i s would a l l o w some s e n i o r s t o s t a y at home fo r longer wi th the h e l p of s u p p o r t s in the community. F a c i l i t y Placement Increased o p t i o n s about f a c i l i t y w a i t l i s t i n g must be e x p l o r e d for e l d e r l y c o u p l e s . F l e x i b l e p o l i c i e s for a d m i t t i n g c o u p l e s or a s s i s t i n g one p a r t n e r in a m a r i t a l 149 dyad to move t o a f a c i l i t y may reduce some of the s t r e s s u s u a l l y f e l t d u r i n g p lacement . The system i s c u r r e n t l y s t r u c t u r e d in such a way that p e r s o n s moving t o a f a c i l i t y and t h e i r spouse have l i t t l e warning as to when the move w i l l o c c u r . They have no a c t u a l p r e p a r a t i o n and most i n d i v i d u a l s e x p e r i e n c e t h i s move as f a i r l y t r a u m a t i c . P a t i e n t and F a m i l y E d u c a t i o n Programs would be b e n e f i c i a l in the i n i t i a l s t a g e s of f a c i l i t y p lacement . O r i e n t a t i o n s a re g i v e n in some f a c i l i t i e s as we l l as F a m i l y Support Groups which dea l wi th adjustment i s s u e s . However, a comprehensive e d u c a t i o n program fo r f a m i l i e s about how the f a c i l i t y o p e r a t e s , e x p e c t a t i o n s of f a m i l y and r o l e s for f a m i l y members w i t h i n the Extended Care Un i t c o u l d be o r g a n i z e d immediate ly a f t e r a d m i s s i o n . T h i s would a l l e v i a t e some c o n f l i c t s l a t e r on as r o l e s as wel l as p h i l o s o p h y and p r o c e d u r e s c o u l d be e x p l a i n e d t o a l e r t r e s i d e n t s and f a m i l y members. T h i s may s e r v e a dual purpose in empowering f a m i l y members t o p a r t i c i p a t e in the Extended Care Un i t i n ways which a re o f t e n d i s c o u r a g e d . One can assume that f a m i l i e s educated about the Extended Care Un i t c o u l d push for change in some of the r o u t i n e s or p r o c e d u r e s 150 wi th which they do not a g r e e . T h i s p a r t i c i p a t o r y c a r e model has i m p l i c a t i o n s for s t a f f t r a i n i n g and models of c a r e which i n c l u d e f a m i l y members more e x t e n s i v e l y than the c u r r e n t model . The r o l e of the s o c i a l worker in the Extended Care Uni t a l r e a d y i n c l u d e s m e d i a t i o n between s t a f f members and f a m i l y members about c a r e i s s u e s . It may be very a p p r o p r i a t e for the s o c i a l worker t o c o o r d i n a t e groups of f a m i l y members or groups of s t a f f and f a m i l y members o r g a n i z e d for the s o l e purpose of improving c a r e for the r e s i d e n t s of the Extended Care U n i t s . P r a c t i c e Issues Counsel1inq 1) Many of the e l d e r l y bereaved e x p r e s s e d f e e l i n g s of i s o l a t i o n d u r i n g the pre-bereavement p e r i o d . The bereaved who f e l t t h e i r f a m i l y members had been s u p p o r t i v e d u r i n g t h e i r s p o u s e ' s s t a y at the Extended Care Un i t were more l i k e l y t o seek them out d u r i n g the bereavement p e r i o d . T h i s was e s p e c i a l l y t r u e of the b e r e a v e d ' s r e l a t i o n s h i p wi th t h e i r c h i l d r e n . F a m i l y c o u n s e l l i n g may f a c i l i t a t e a s h a r i n g of g r i e f f e e l i n g s 151 and an i n c r e a s e d u n d e r s t a n d i n g by both g e n e r a t i o n s of c o n f l i c t s p r e v i o u s l y u n r e s o l v e d . It may a l s o d i f f u s e i s s u e s of g u i l t and blame which a re common at a t ime of i l l n e s s fo r f a m i l i e s wi th c o n f l i c t . F i n a l l y , f a m i l y c o u n s e l l i n g may s e r v e t o b u i l d more t r u s t in e x i s t i n g r e l a t i o n s h i p s and i n c r e a s e suppor t systems for the e l d e r l y parent d u r i n g bereavement . F a m i l y c o u n s e l l i n g c o u l d i n c l u d e any or a l l of the f a m i l y members d u r i n g the p e r i o d of the d e c e a s e d ' s i l l n e s s at the Extended Care U n i t . F a m i l i e s in c o n f l i c t o f t e n r e v e a l the i s s u e s that a re t r o u b l i n g them. There a r e numerous ways the Extended Care Un i t s o c i a l workers c o u l d engage f a m i l i e s in c o u n s e l l i n g . Many s o c i a l workers a l r e a d y seek out and c o u n s e l f a m i l i e s who a r e in c o n f l i c t . In a d d i t i o n , they c o u l d have o r i e n t a t i o n s e s s i o n s wi th a l l f a m i l i e s where t h e r e i s an e l d e r l y s p o u s e , when a new r e s i d e n t moves i n t o the ECU, or as an annual or b i - a n n u a l r e v i e w . T h i s c o u l d s e r v e as an i n t r o d u c t i o n t o the Extended Care U n i t , f a c i l i t a t e a b e g i n n i n g c o n n e c t i o n and an assessment for f u r t h e r work. The f a m i l y systems model o f c o u n s e l l i n g which b u i l d s on s t r e n g t h s and r o l e s and e x p e c t a t i o n s would 152 ensure the i s s u e s of a n t i c i p a t o r y g r i e f are d i s c u s s e d and may i n c r e a s e support for the e l d e r l y parent before bereavement. It means that the fami l y w i l l be d i s c u s s i n g the s i g n i f i c a n c e of the impending death of t h e i r f a m i l y member while b u i l d i n g on t h e i r c onnections with other members of the fa m i l y . The use of both problem-focused and emotion-focused t h e r a p i e s appear t o help the bereaved accept the death and move forward in the g r i e f process. The use of a combination of these two types of t h e r a p i e s f i t s well with the p r o f e s s i o n of s o c i a l work. S o c i a l workers i n the Extended Care U n i t s appear to be a l r e a d y encouraging the e l d e r l y spouse to t a l k about the l o s s e s they are encountering. S o c i a l workers co u l d then continue to p r o v i d e the support d u r i n g the bereavement p e r i o d . 2) The bereaved who are i s o l a t e d and depressed are v u l n e r a b l e and i f l e f t on t h e i r own may not get to the resou r c e s they need. The e l d e r l y bereaved are i n need of i n f o r m a t i o n and a s s i s t a n c e in g e t t i n g to these r e s o u r c e s . The s o c i a l worker whose r o l e would be community l i a i s o n would serve an important f u n c t i o n for the bereaved spouse. Bereaved i n d i v i d u a l s c o u l d be 153 r e f e r r e d t o community groups for s o c i a l events or bereavement support. S o c i a l workers are i n the p o s i t i o n to know the bereaved and the agencies in t h e i r areas that may p r o v i d e some a s s i s t a n c e . 3) The Extended Care U n i t s c o u l d expand t h e i r formal bereavement programs. For inst a n c e , s o c i a l o u t i n g s that i n c l u d e other bereaved women and men could be organized. These could be o f f e r e d through the Extended Care Unit but co u l d meet in the community. A "buddy" system where one bereaved person c o n t a c t s another and o f f e r s support could e a s i l y be organized. The "buddies" c o u l d take some r e s p o n s i b i l i t y for making sure the people that knew the bereaved from the Extended Care Unit had some contact with the bereaved spouse. T h i s would ensure the bereaved r e c e i v e d support from v a r i o u s p a r t s of the s o c i a l network at the Extended Care Unit — other r e s i d e n t s , f a m i l y members of other r e s i d e n t s , and s t a f f . The s o c i a l worker co u l d be i n v o l v e d with the "buddy" system t o ensure the bereaved was contacted at an a p p r o p r i a t e time during bereavement. 4) Education f o r s t a f f members and community agency s t a f f i s r e q u i r e d about i s s u e s of a n t i c i p a t o r y 154 g r i e f , and the g r i e v i n g p r o c e s s d u r i n g bereavement. F u t u r e Research Ideas The e x p e r i e n c e of e l d e r l y spousa l bereavement has not been r e s e a r c h e d a g rea t d e a l . There a r e numerous a r e a s fo r f u r t h e r r e s e a r c h . The f o l l o w i n g a re some s u g g e s t i o n s for f u r t h e r r e s e a r c h . 1) More r e s e a r c h i s needed on l o s s p r e v i o u s l y e x p e r i e n c e d and whether that makes a d i f f e r e n c e in the r e s p o n d e n t s ' e x p e r i e n c e . It would have been i n t e r e s t i n g t o i n t e r v i e w two groups of r e s p o n d e n t s : one group who l o s t a spouse for the f i r s t t ime and one group who l o s t t h e i r f i r s t spouse when they were younger . Some of the f a c t o r s that would have t o be taken i n t o account would be 1) l e n g t h of mar r iage of the second m a r r i a g e , 2) s i g n i f i c a n c e of the f i r s t r e l a t i o n s h i p , and 3) developmenta l s t a g e of the c o u p l e at the t ime of the f i r s t l o s s . 2) A d d i t i o n a l r e s e a r c h i s a l s o needed on the compar ison between two groups of bereaved s p o u s e s , one younger group and one o l d e r g roup . A s tudy where both groups were asked the same q u e s t i o n s and then answers a r e compared may y i e l d some i n t e r e s t i n g r e s u l t s . 155 3) Research c o u l d s tudy the a c t u a l h e a l t h r i s k s brought up by the c o m b i n a t i o n of f a c t o r s e x p e r i e n c e d by the p o p u l a t i o n in t h i s s t u d y , such as l o n g - t e r m c a r e g i v i n g , advanced y e a r s and bereavement. Most s t u d i e s that have looked at i n c r e a s e d h e a l t h r i s k wi th bereavement have s i m p l y looked at i l l n e s s i n c r e a s i n g a f t e r the d e a t h . Summary In t h i s s tudy I have under taken an e x p l o r a t i o n of bereavement i s s u e s wi th a smal l group of e l d e r l y spouses d u r i n g t h e i r e a r l y bereavement p e r i o d . The p r e c e d i n g pages i d e n t i f y what has gone b e f o r e in r e s e a r c h , t h e o r y and programs for the b e r e a v e d . 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T o r o n t o : NC P r e s s . V o l k a n , V . ( 1 9 8 1 ) . L i n k i n g o b j e c t s and l i n k i n g p h e n o m e n a . New Y o r k : I n t e r n a t i o n a l U n i v e r s i t i e s P r e s s , I n c . W e n g e r , C . ( 1 9 8 4 ) . The s u p p o r t i v e n e t w o r k : C o p i n g w i t h o l d  a g e . L o n d o n : G e o r g e A l l e n & U n w i n . W o r d e n , W i l l i a m . ( 1 9 8 2 ) . G r i e f c o u n s e l l i n g and g r i e f  t h e r a p y . New Y o r k : S p r i n g e r P u b l i s h i n g C o . APPENDIX "A 163 Letter of Introduction March, 1991 Dear: I am a Master's student from the School of Social Work at the University of B r i t i s h Columbia. I am also engaged in a study at the University Hospital. I am very interested in bereavement in the eld e r l y and hope to increase what we know about t h i s area with my research. I am writing to request your p a r t i c i p a t i o n in my study. I wish to offer my condolence on your recent loss. I r e a l i z e that I am corresponding to you at a very d i f f i c u l t time and I apologize i f my l e t t e r causes you any d i s t r e s s . I would l i k e to b r i e f l y describe the project in which I am asking you to p a r t i c i p a t e . I'd l i k e to interview you about your thoughts and feelings in the last few months. I am trying to understand more about your experience and how you have been managing. I also want to explore who or what you may have found helpful or supportive during t h i s time. I would be the only interviewer and would not take more than one to one and a half hours of your time. If you agree to the interview, I would come to your home at a time convenient for you. I would l i k e to tape the interview. I w i l l keep a l l the information received from you confidential and once my analysis i s done, I w i l l destroy the tape. If you do not wish to pa r t i c i p a t e , I wish you well in the time ahead. I encourage you to contact me i f you would l i k e any additional information about my project or bereavement in general. I can be reached by telephone at or by mail at . If you have any questions about the project. Otherwise, I w i l l be speaking with you soon by telephone i f you agree to p a r t i c i p a t e . Thank you. Sincerely, 164 APPENDIX "B Consent Form I agree t o be i n t e r v i e w e d by L o r r a i n e S t - M a r t i n , from the School o f S o c i a l Work at the U n i v e r s i t y of B r i t i s h Columbia for her r e s e a r c h p r o j e c t , "A Study of Bereavement: The E x p e r i e n c e of the Spouse of an Extended Care R e s i d e n t " . I unders tand that the r e s e a r c h format w i l l be an i n t e r v i e w at my home. The q u e s t i o n s w i l l r e v o l v e around my f e e l i n g s and thoughts s i n c e the death of my spouse at the Extended Care U n i t . Some q u e s t i o n s w i l l a l s o focus on whom or what I have found t o be h e l p f u l t o me at t h i s t ime . The purpose of the r e s e a r c h i s t o f u r t h e r u n d e r s t a n d i n g of the l o s s e x p e r i e n c e fo r the e l d e r l y . I agree t o have the i n t e r v i e w taped so tha t i t may l a t e r be a n a l y s e d . The i d e n t i t y of a l l r e s p o n d e n t s w i l l be kept c o n f i d e n t i a l and a l l i n f o r m a t i o n o b t a i n e d w i l l be p r e s e n t e d in a manner to ensure t h i s c o n f i d e n t i a l i t y . Tapes w i l l be d e s t r o y e d once the a n a l y s i s i s c o m p l e t e d . My p a r t i c i p a t i o n or n o n - p a r t i c i p a t i o n w i l l not a f f e c t my a c c e s s t o programs, t reatment or s e r v i c e s in any way. The i n t e r v i e w w i l l be between one t o one and a h a l f h o u r s . I have the r i g h t t o r e f u s e t o answer any q u e s t i o n s or withdraw at any t ime . I may a l s o ask for c l a r i f i c a t i o n of any q u e s t i o n I do not u n d e r s t a n d . I acknowledge r e c e i v i n g a copy of t h i s consent form as wel l as L o r r a i n e S t - M a r t i n ' s c o n t a c t a d d r e s s and t e l e p h o n e no: A v e . , Vancouver , T e l : . I may c o n t a c t her i f I d e s i r e any a d d i t i o n a l i n f o r m a t i o n , c l a r i f i c a t i o n or the r e s u l t s of t h i s p r o j e c t . S i g n a t u r e of P a r t i c i p a n t Date 165 APPENDIX "C" Interview Schedule In t roduct i o n ; The purpose of t h i s i n t e r v i e w i s t o ask you q u e s t i o n s about your s p o u s e ' s s t a y at Extended C a r e ; about the e v e n t s l e a d i n g up t o h i s / h e r d e a t h ; and about some of your f e e l i n g s and thoughts s i n c e t h e n . It w i l l he lp me l a t e r in the i n t e r v i e w , i f I ask a few s p e c i f i c q u e s t i o n s f i r s t . These w i l l be most ly about your s p o u s e ' s i l l n e s s . Demographics; A l . What t y p e of i l l n e s s / e s or d i s e a s e / e s d i d your spouse have? A2. D id you c a r e for your spouse at home fo r any l e n g t h of t ime b e f o r e s / h e went to Extended Care? A3. Was t h i s the f i r s t Extended Care Un i t h e / s h e l i v e d i n ? A4. How long d i d your spouse l i v e at Extended Care? Extended Care Un i t E x p e r i e n c e ; The next q u e s t i o n s r e l a t e t o the t ime around your s p o u s e ' s d e a t h . I 'd l i k e t o focus on your thoughts and f e e l i n g s at t h i s t i m e . B I . Can you d e s c r i b e your f e e l i n g s about how the Extended Care Un i t responded to you when your spouse was near death? P r o b e s ; D id you know s / h e was near death? Did anyone t e l l you? Who t o l d you? Did you f e e l they were the r i g h t person t o t e l l you? B2. Can you t e l l me how you f e e l about how the Extended Care Un i t a c t u a l l y handled your s p o u s e ' s dea th? 166 Probes: Was there anything that you think should have been done d i f f e r e n t l y ? B3. Can you t e l l me i f there was anything that was not done that should have been? Probes: Would i t have been helpful to have information on grieving before your spouse died? Events Surrounding the Death: Now, I would l i k e to focus on your experiences since your spouse's death. CI. Can you describe the feelings you had around the time of your spouse's death? C2. Was i t important to you to have a service such as a memorial or funeral for your spouse? C3. Do you think i t would i t have been important to your spouse to have t h i s service? C4. If there was a service, can you t e l l me what i t was l i k e for you? Probes: Did i t go as planned? Was i t the type of service you wanted? C5. Can you t e l l me i f you s t i l l have thoughts about the service? C6. What else was important to you around the time of your spouse's death? Reactions/Experience in the Past Month (Several  Months): The next seri e s of questions w i l l ask about how you have been managing t h i s past month(s). Dl. What has t h i s past month(s) been l i k e for you? Probes: How have things been going? Have you continued with a c t i v i t i e s you had before? Have you had stresses about handling the estate/money? D2. Can you describe any physical changes you have had in the past month? Probes: Have you had any symptoms such as headaches? 167 Have you had any problems s l e e p i n g which a r e unusual fo r you? Have you f e l t f a t i g u e d ? Have you f e l t c o n f u s e d ? D3. Can you d e s c r i b e your thoughts over the past month<s)? P r o b e s : ( Have you found y o u r s e l f t h i n k i n g u p s e t t i n g thoughts about death? Have you found i t hard t o b e l i e v e your spouse i s gone? Have you been worry ing about the f u t u r e ? D4. Can you t e l l me how you have been f e e l i n g s i n c e the dea th? P r o b e s : Have you found y o u r s e l f f e e l i n g angry? Do you t h i n k you have f e l t any g u i l t s i n c e your s p o u s e ' s death? Have you f e l t your s p o u s e ' s p r e s e n c e s i n c e h i s / h e r dea th? D5. Can you d e s c r i b e any o t h e r changes you have had in the l a s t month? P r o b e s : Are t h e r e changes in your l i v i n g s i t u a t i o n ? Are t h e r e changes in your r o u t i n e s ? D6. Have you seen your d o c t o r in the l a s t month(s)? Coping wi th the E x p e r i e n c e : Now I wish to d i s c u s s what you f e e l has g i v e n you the s t r e n g t h t o manage t h i s past month(s)? E l . Can you e x p l a i n what you t h i n k has h e lp e d you through t h i s ? E2 . Do you t h i n k t h e r e i s something in you tha t h e lp e d you get through t h i s ? P r o b e s : Do you t h i n k the type of p e r s o n a l i t y you have made a d i f f e r e n c e ? Do you t h i n k any b e l i e f s you h o l d made a d i f f e r e n c e ? Do you t h i n k any r o u t i n e s you have made a d i f f e r e n c e ? E 3 . Do you r e g r e t a n y t h i n g y o u ' v e done in the l a s t month(s)? E4 . Can you t e l l me i f - you have found o t h e r p e o p l e 168 h e l p f u l in the past month(s)? P r o b e s : If f a m i l y has h e l p e d , who and how? If f r i e n d s have h e l p e d , who and how? Are t h e r e members of the community who were h e l p f u l ? Have you sought p e o p l e out t h i s past month(s)? If you have not sought anyone o u t , can you t e l l me why? A s s i s t a n c e / S u p p o r t : I would l i k e to know from someone who has e x p e r i e n c e d r e c e n t widowhood what they might f i n d h e l p f u l . The next q u e s t i o n s a re about suppor t and he lp that you may need or want. F I . What would be h e l p f u l t o you now? F2 . Would you l i k e t o know about suppor t s e r v i c e s fo r those who have had a r e c e n t l o s s ? F 3 . Do you know where t o go in the community t o f i n d s e r v i c e s fo r those who have had a r e c e n t l o s s ? P robe : If you had t o f i n d them, where would you go? F 3 . Would be h e l p f u l t o you t o meet o ther p e o p l e who a l s o r e c e n t l y l o s s a spouse? F 4 . Would you be i n t e r e s t e d in r e c e i v i n g h e l p from the Extended Care Un i t i f i t was o f f e r e d ? Support Group I n d i v i d u a l C o u n s e l l i n g Other Demographics: There a re a few s p e c i f i c q u e s t i o n s about your background that I s t i l l need t o ask . These q u e s t i o n s w i l l a s s i s t in t h i s r e s e a r c h but i f t h e r e a r e any that you f e e l u n c o m f o r t a b l e in answer ing p l e a s e t e l l me. G l . How long were you m a r r i e d ? G2. Do you have any c h i l d r e n ? G3. How many c h i l d r e n do you have? G4. Would you mind t e l l i n g me which age b r a c k e t you a r e i n ? 65 t o 70 70 t o 75 75 t o 80 169 80 t o 85 85+ G5. Would you mind t e l l i n g me which income bracke t you a r e i n ? Under $10,000 a y e a r ? Between $10,000 to $20,000. L Between $20,000 t o $30 ,000 . Between $30,000 t o $50 ,000 . Over $50,000. G6. What i s your c u l t u r a l b a c k g r o u n d / c i t i z e n s h i p ? Thank you for p a r t i c i p a t i n g in the s t u d y . Have you any q u e s t i o n s about what we have d i s c u s s e d today or about the s tudy in g e n e r a l ? Sometimes d i s c u s s i n g the event w i l l b r i n g up c e r t a i n f e e l i n g s which you may want to d i s c u s s a f t e r I l e a v e . I am a v a i l a b l e t o t a l k wi th you about t h e s e i s s u e s . I w i l l a l s o be making the r e s u l t s of the s tudy a v a i l a b l e t o any of the p e o p l e I i n t e r v i e w , i f they a re i n t e r e s t e d . ( If you have any q u e s t i o n s about the s tudy a f t e r I l e a v e , p l e a s e f e e l f r e e t o c a l l me at the c o n t a c t numbers I have g i v e n you . 

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