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Institutionalization of a spouse with Alzheimer's disease : a phenomenological study of the experience… Whytock, Sandra Anne 1989

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INSTITUTIONALIZATION OF A SPOUSE WITH ALZHEIMER' DISEASE: A PHENOMENOLOGICAL STUDY OF THE EXPERIENCE OF THE ELDERLY WIFE CAREGIVER By SANDRA ANNE WHYTOCK B.Sc.N., U n i v e r s i t y o f A l b e r t a , 1971. A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES The S c h o o l o f N u r s i n g We a c c e p t t h i s t h e s i s a s c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA O c t o b e r 1989 Q S a n d r a Anne Whytock, 1989 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 The University of British Columbia Vancouver, Canada Date rlrJ-. / 9jf DE-6 (2/88) i i ABSTRACT INSTITUTIONALIZATION OF A SPOUSE WITH ALZHEIMER'S DISEASE: A PHENOMENOLOGICAL STUDY OF THE EXPERIENCE OF THE ELDERLY WIFE CAREGIVER This study describes the experience of the e l d e r l y wife caregiver during the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n of her husband with Alzheimer's disease. Phenomenology was the research method used because of i t s unique focus on revealing an experience from the perspective of the p a r t i c i p a n t . Because problems i n health care a r i s e from the d i f f e r i n g perspectives of professionals and lay persons, discovery of the caregiver's perspective was considered to be ess e n t i a l i n order for professionals to provide care which i s s e n s i t i v e to caregiver needs. Data were c o l l e c t e d through 16 i n t e r a c t i v e interviews with 8 wives who were between 64 and 78 years old, and whose husbands with Alzheimer's disease had been l i v i n g i n an i n s t i t u t i o n for between 4 and 13 months. R e f l e c t i v e analysis proceeded concurrently with interviews and continued following interview completion. The insights achieved were synthesized and integrated into a consistent d e s c r i p t i o n of the experience. Throughout the accounts of the experience, uncertainty was the pervasive and unifying theme. The uncertainty which the wives experienced was described as having i t s source i n two forms of separation. These two forms of separation, separation of husband from home, and separation of husband and wife, had p a r a l l e l structures which included expressions of uncertainty, factors influencing uncertainty and management i n the state of uncertainty. Uncertainty was the way i n which wives experienced both continuing r e s p o n s i b i l i t y for t h e i r husbands' well-being and l i v e s as married widows. The summary description of the t o t a l experience for the wives was that i t was worse than death. The findings confirm that the wives' burden i s not r e l i e v e d by i n s t i t u t i o n a l i z a t i o n of t h e i r husbands. Thus they also confirm the continuing need fo r caregiver care. The findings also demonstrate that f a i l u r e of professionals and others to understand the experience from the wives' perspective contributes to caregiver burden following i n s t i t u t i o n a l i z a t i o n of husbands with Alzheimer's disease. i v Table of Contents Abstract i i Table of Contents i v L i s t of Figures v i i Acknowledgments v i i i Chapter 1: INTRODUCTION 1 Background to the Problem 1 Conceptualization of the Problem 4 Problem Statement 9 Purpose 9 Research Question 9 Theoretical and Methodological Perspective of the Study 10 De f i n i t i o n of Terms 13 Assumptions 14 Limitations 14 Summary 15 Chapter2: REVIEW OF SELECTED LITERATURE 16 The Experience of Caregiving 16 Caregiving i n Chronic I l l n e s s 16 Caregiving i n Dementia 18 Spouses as Caregivers 21 Wives as Caregivers 22 The Caregiver's Experience of I n s t i t u t i o n a l i z a t i o n ... 23 The Decision to I n s t i t u t i o n a l i z e 23 Predictors of i n s t i t u t i o n a l i z a t i o n 24 Resistance to i n s t i t u t i o n a l i z a t i o n 2 6 The experience of deciding 3 0 The Caregiver's Experience Following I n s t i t u t i o n a l i z a t i o n 31 Summary 37 Chapter 3: METHODOLOGY 39 Selection of Participants 39 C r i t e r i a for Selection 39 Rationale 39 Selection Procedure 41 Character i s t i c s 42 Data C o l l e c t i o n and Analysis 44 Ethics and Human Rights 47 Summary 48 V Chapter 4: THE WIVES' ACCOUNTS 49 Introduction 49 Separation of Husband From Home 50 Separation of Husband From Home: a Source of Uncertainty 50 Expressions of Uncertainty About Doing the Best Thing 58 Uncertainty about entrusting husband's care to others 58 Uncertainty about f u l f i l l i n g r o l e i n husband's care 61 Factors Influencing Uncertainty About Doing the Best Thing 64 The admission process 64 Quality of care 71 Staff response to wife as caregiver 82 Reactions of other patients to husband's behaviour 84 Husband's responses to i n s t i t u t i o n a l i z a t i o n 86 Managing i n State of Uncertainty About Doing the Best Thing 88 Ensuring husband's well-being 88 Managing uncomfortable feelings 93 Separation of Husband And Wife 97 Separation of Husband And Wife: A Source of Uncertainty 97 Expressions of Uncertainty About Being a Married Widow 100 Uncertainty about l i v i n g as a married widow 100 Factors Influencing Uncertainty About Being a Married Widow 103 Social response to r o l e 103 Husband's recognition of wife 109 Managing i n State of Uncertainty About Being a Married Widow I l l Maintaining attachment I l l Adapting to being alone 115 Total Experience i s Worse Than Death 119 Summary 123 Chapter 5: DISCUSSION OF FINDINGS 12 6 Uncertainty as the Unifying Theme 127 Separation as a Source of Uncertainty 128 Expressions of Uncertainty 131 Uncertainty About Doing the Best Thing 132 Uncertainty About Li v i n g as Married Widow 134 Factors Influencing State of Uncertainty 13 6 Management i n State i f Uncertainty 139 Total Experience i s Worse Than Death 143 Summary 145 v i Chapter 6: SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING 147 Summary and Conclusions 147 Implications for Nursing Practice 151 Implications for Nursing Education 156 Implications for Nursing Research 157 BIBLIOGRAPHY 160 APPENDICES 168 Appendix A - Letter of Introduction 168 Appendix B - Consent for Telephone Contact 169 Appendix C - Informed Consent Form 170 Appendix D - Demographic Data Sheet 171 Appendix E - Interview Guide 172 v i i L i s t of Figures Figure 1. Explanatory Model Framework: Health Care Relationships as Transactions Between Explanatory Models 6 Figure 2. Experience of I n s t i t u t i o n a l i z a t i o n of Husband With Alzheimer's Disease i s Uncertainty 51 v i i i ACKNOWLE DGEMENTS F i r s t , I would l i k e to express my thanks to the eight wives who par t i c i p a t e d i n the study. Their willingness to share t h e i r experience made t h i s research possible. I would also l i k e to express my appreciation to the members of my thesis committee for t h e i r guidance and support throughout t h i s challenging learning experience. I am es p e c i a l l y g r a t e f u l to Dr. Joan Anderson (chair) for sharing her immense enthusiasm for q u a l i t a t i v e research and expertise i n phenomenology, and to Dr. Betty Davies for her thought provoking ideas and commitment to c l a r i t y i n professional communication of knowledge. Many classmates and co-workers have stimulated my thoughts and provided encouragement during the research process. I would l i k e to express s p e c i a l thanks to Ling L a i , Toni Stovel, Sigga H a l l d o r s d o t t i r and Marjorie Mclntyre who, by sharing t h e i r research process with me, provided i n s p i r a t i o n . F i n a l l y , I would l i k e to acknowledge the contribution of my family. Without the understanding and support of my husband, Jim, and my daughters, Kathy and Jennifer, t h i s thesis could not have been written. 1 Chapter 1 INTRODUCTION Background to the Problem Alzheimer's disease i s an i r r e v e r s i b l e disease of unknown etiology which r e s u l t s i n unexpected and premature decay of central nervous system tiss u e and function (Whitney, 1985). Because of t h i s decay the esse n t i a l feature of the disease i s dementia with c h a r a c t e r i s t i c loss of i n t e l l e c t u a l a b i l i t i e s of s u f f i c i e n t severity to i n t e r f e r e with s o c i a l or occupational functioning (American P s y c h i a t r i c Association c i t e d i n Whitney, 1985) I t has been estimated that approximately 10% of the population over the age of 65 i s affected by dementia (Robertson & Reisner, 1982), and while Alzheimer's disease i s only one of several possible causes, i t i s estimated that h a l f of a l l of those who suffer from dementia s u f f e r from Alzheimer's disease (Williams, 1986). By 1983 approximately 100,000 to 300,000 Canadians were affected by Alzheimer's disease, and these numbers can be expected to increase along with the st e a d i l y increasing e l d e r l y proportion of the Canadian population (Hirst, 1983). The s i g n i f i c a n c e of Alzheimer's disease as a health problem, therefore, i s cl e a r . The course of Alzheimer's disease i s described as progressive, involving three stages (Gwyther & Mattison, 1983; Williams, 1986). The f i r s t stage, l a s t i n g 2-4 years i s characterized by memory loss, time and space d i s o r i e n t a t i o n , mistakes i n judgement and a f f e c t changes. The second and 2 longer l a s t i n g stage (from 2 - 1 2 ) years includes increasing d i s o r i e n t a t i o n and aphasia, restlessness at night, forgetting of s o c i a l l y acceptable behaviour and progressive physical d i s a b i l i t y . The t h i r d and generally terminal stage i s the stage during which the in d i v i d u a l becomes bedridden, incontinent, and withdrawn, and suffers loss of motor and sensory performance. I t i s during t h i s t h i r d stage that the patient i s usually i n s t i t u t i o n a l i z e d (Whitney, 1985; Williams, 1986). Patients who have dementia account for approximately 50% of a l l nursing home occupants (Rowe, 1985). S t i l l , research has shown that i n spi t e of the immense problems which r e s u l t from mental and physical deterioration during the course of the disease, the majority are cared for i n the home by family members, often for many years (Robertson & Reisner, 1982; Mann, 1985; Chenoweth & Spencer, 1986). Recent recognition of the tenacity of family caregivers i n maintaining patients at home, and current emphasis on keeping the e l d e r l y out of i n s t i t u t i o n s to maintain t h e i r q u a l i t y of l i f e and contain health costs, has stimulated considerable research (Brock & O'Sullivan, 1985; Davis, 1980; Fengler & Goodrich, 1979; Gilhooly, 1984). Much of t h i s research i s directed towards i d e n t i f i c a t i o n of ways of providing support needed to preserve the d i f f i c u l t caregiving r o l e . In t h i s respect the caregiver performing the caregiving r o l e i s recognized as being as much i n need of care as the patient. However, the p o s s i b i l i t y that the need f o r care f o r the 3 caregiver continues to be important during the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n has not been r e f l e c t e d i n the l i t e r a t u r e . As Colerick and George (1986) said, "a caregiver's decision to r e l i n q u i s h care to professionals i s frequently d i f f i c u l t due to an intense and exclusionary bond with the patient, and i t most often follows a period of cumulative s t r a i n and fatigue" (p.493). I t i s not surprisinq, therefore, that caregivers have expressed the f e e l i n g that much more could have been done to make the experience of t r a n s i t i o n to an i n s t i t u t i o n easier for them and t h e i r r e l a t i v e s (Chenoweth & Spencer, 1986). No d e f i n i t e guidelines were found i n the l i t e r a t u r e regarding the duration of the i n i t i a l period of adjustment to i n s t i t u t i o n a l i z a t i o n for either the patient or the family members. However, Locker (1981) describes the f i r s t month of i n s t i t u t i o n a l i z a t i o n as the most d i f f i c u l t , while Chenitz (1983) suggests that c r i s i s r esolution i s achieved i n about eight weeks. In one study newly i n s t i t u t i o n a l i z e d i s defined as having been admitted to a care f a c i l i t y f or not more than three months; however, no rationale was given for t h i s d e f i n i t i o n (Brock & O'Sullivan, 1985). I t has been the researcher's experience during several years of c l i n i c a l experience i n nursing that interactions between s t a f f and caregivers, p a r t i c u l a r l y during the early period of placement i n a f a c i l i t y , frequently involve c o n f l i c t . Some have suggested that t h i s c o n f l i c t a r ises as a r e s u l t of professional tendency to focus on the needs of the 4 a f f l i c t e d member while overlooking the family caregiver (Annett, 1986; Linn & Gurel 1969; Mann, 1985; Schmidt, 1987). The researcher's i n t e r e s t i n i n s t i t u t i o n a l i z a t i o n of a spouse with Alzheimer's disease was stimulated by the sur p r i s i n g revelation of an e l d e r l y wife caregiver who, i n looking back on her experience at the time of i n s t i t u t i o n a l i z a t i o n of her husband, described the s u f f e r i n g she had experienced. Much of her s u f f e r i n g was due to her intense f e e l i n g of being misunderstood by the s t a f f of the f a c i l i t y to which her husband was admitted. Desire to study the experience of e l d e r l y wives was reinforced by the researcher's awareness of the numbers of wives who encountered t h i s experience. The fact that caregiving has t r a d i t i o n a l l y been defined as a woman's rol e and that women l i v e longer and tend to marry older husbands means that most demented males are cared for at home by t h e i r wives (Colerick & George, 1986; Fengler & Goodrich, 1979; Z a r i t , Todd & Z a r i t , 1986). Understanding of the experience of e l d e r l y wives, therefore, would seem to be of great si g n i f i c a n c e to those caring for patient's with Alzheimer's disease. Conceptualization of the Problem Within the nursing profession, the importance of studying health problems from the c l i e n t ' s perspective i s being recognized (Hayes & Knox, 1984; Lynam & Anderson, 1986, Robinson, 1985). I t has been suggested that such a perspective promotes c l i n i c a l practice which i s responsive to 5 the c l i e n t ' s needs by f a c i l i t a t i n g professional d e f i n i t i o n of problems and p r e s c r i p t i o n of solutions which are congruent with the c l i e n t ' s point of view (Anderson, 1985). One conceptualization of health and i l l n e s s which i s he l p f u l i n explaining the differences between nurses and c l i e n t s with respect to t h e i r explanations and interpretations of health and i l l n e s s comes from the work of Kleinman i n the f i e l d of medical anthropology (Anderson 1981, 1985). According to Kleinman (1978), health care professionals belong to a s p e c i f i c c u l t u r a l and s o c i a l system having i t s own system of meanings and behavioural norms, while c l i e n t s of health care professionals belong to d i f f e r e n t c u l t u r a l and s o c i a l systems and thus have t h e i r own systems of meanings and norms. As a r e s u l t of differences i n meanings and norms, members of each c u l t u r a l group understand and explain r e a l i t y i n d i f f e r e n t ways. These explanations of r e a l i t y are what Kleinman (1977, 1978) c a l l s explanatory models. They form the basis for the explanatory model approach to health care (Kleinman, 1978, 1982) which provides the framework for conceptualization of the problem i n t h i s study (see Figure 1). Within the health care system, Kleinman (1978) suggests that there are three d i s t i n c t sectors i n which sickness i s experienced and reacted to: the popular sector ( i n d i v i d u a l , family, society and community), the f o l k sector (self - h e l p groups, r e l i g i o u s p r a c t i t i o n e r s , heterodox healers) and the Figure 1 6 EXPLANATORY MODEL FRAMEWORK: HEALTH CARE RELATIONSHIPS AS TRANSACTIONS BETWEEN EXPLANATORY MODELS th e r a p e u t i c expectations v a l u e s , goals etc.) Adapted from: Anderson, J.A., 1987, p.8, and Kleinman, A., 1978, p.86 7 professional sector (doctors, nurses and other health care professionals). Interactions between professional and lay persons which occur i n health care relationships are transactions between the explanatory models of the sectors. During health care transactions, because explanatory models are determined by s p e c i f i c systems of knowledge and values centered i n the d i f f e r e n t sectors, differences between the models frequently occur, often r e s u l t i n g i n problems i n c l i n i c a l communication and i n c l i n i c a l management. Differences i n explanatory models a r i s e from differences i n the perspectives between the sectors. Within the professional, popular and f o l k arenas, Kleinman (1978) contends that sickness i s viewed i n d i s t i n c t i v e l y d i f f e r e n t ways. Professionals, he says, usually focus on the diagnosis and treatment of disease which involves "abnormalities i n the structure and function of body organs and systems", while those i n the popular and usually the f o l k sectors deal with " i l l n e s s " . Kleinman and associates (1978) have described i l l n e s s as "experiences of disvalued changes i n states of being and i n s o c i a l function; the human experience of sickness" (p.251). Problems a r i s e when professionals provide care which i s responsive to the disease while neglecting i l l n e s s . Differences between explanatory models of professionals and t h e i r c l i e n t s also occur because of differences i n personal b e l i e f s and values (Anderson, 1987; Kleinman, 1981). Sources of personal perspectives are diverse, 8 including economic background, s o c i a l background, l i f e experiences, interests and other aspects of the day-to-day world of the i n d i v i d u a l . Problems a r i s e when personal views of the professional are i n c o n f l i c t with those of the patient and family. E l i c i t i n g the patient's explanatory model provides the professional with "knowledge of the b e l i e f s the patient holds about h i s i l l n e s s , the personal and s o c i a l meaning he attaches to h i s disorder, h i s expectations of what w i l l happen to him and what doctors (professionals) w i l l do and his own therapeutic goals" (Kleinman, Eisenberg and Good, 1978, p.256). The d i r e c t influence of the explanatory model on a l l c l i e n t decisions regarding health care makes i t ess e n t i a l that the professional understands the c l i e n t ' s own model. Thus Kleinman's explanatory model framework indicates that the suf f e r i n g experienced by the caregiver as a r e s u l t of perceived s t a f f misunderstanding, and the c o n f l i c t observed by the researcher and others between family caregivers and professionals, can be understood as the outcome of differences i n explanatory models. The greater the l e v e l of professional understanding of the explanatory model of caregivers through discovery of the caregivers' own experience, the greater the p o s s i b i l i t y of negotiating care which i s appropriate for the caregiver and s a t i s f y i n g f o r both caregiver and professional (Anderson, 1981, 1987). 9 Problem Statement The i n i t i a l period of i n s t i t u t i o n a l i z a t i o n i s p o t e n t i a l l y a time of extreme d i f f i c u l t y for the e l d e r l y wife caregiver; yet no research could be found which documents the experiences of these individuals during that time. Because the decision to i n s t i t u t i o n a l i z e i s a d i f f i c u l t one, often experienced at a time of physical and emotional exhaustion, the l i k e l i h o o d that caregivers continue to require care during t h i s time must be considered. F a i l u r e to provide care which i s se n s i t i v e to t h e i r needs can r e s u l t i n s u f f e r i n g for the caregiver and c o n f l i c t between caregiver and s t a f f . Therefore, i f nurses are to provide optimal care to caregivers throughout t h i s period i n the course of Alzheimer's disease, i t i s ess e n t i a l that they recognize and understand the caregivers' experience of i n s t i t u t i o n a l i z i n g t h e i r spouses. Purpose The purpose of t h i s study i s to describe the experience of the e l d e r l y wife caregiver during the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n of her spouse with Alzheimer's disease. Research Question What i s the experience of the e l d e r l y wife caregiver during the i n i t i a l period of her spouse's i n s t i t u t i o n a l i z a t i o n with Alzheimer's disease? 10 Theoretical and Methodological Perspective of the Study According to F i e l d and Morse (1985), "For each question, there i s a best or most appropriate method, and s e l e c t i n g the method i s the most important decision i n the research process" (p. 29). This view has been widely supported ( C o l a i z z i , 1978; Giorgi, 1970; R i s t , 1979). Phenomenology was the research method chosen for the study because i t i s believed to be the best and most appropriate approach f o r answering the research question posed. The following b r i e f description of the philosophical and methodological perspectives of phenomenology w i l l reveal the reasons f o r t h i s decision. An account of the way i n which the phenomenological method was implemented i n the study w i l l be presented i n Chapter 3. The research question for the study developed as a r e s u l t of i d e n t i f i c a t i o n of a problem i n nursing prac t i c e . This problem was conceptualized with guidance from Kleinman's explanatory model as a problem a r i s i n g from differences between professional and lay caregiver explanatory models of an experience. The researcher thus i d e n t i f i e d the need to explore the experience of i n s t i t u t i o n a l i z a t i o n of a husband with Alzheimer's disease i n a way that would reveal the explanatory model of the e l d e r l y wife caregiver from her own perspective, while at the same time contributing r e s u l t s that would be s i g n i f i c a n t to the nursing profession. Phenomenology i s a t h e o r e t i c a l perspective and a research method i d e a l l y suited to both exploring the experience from the wife's perspective and contributing r e s u l t s that are s i g n i f i c a n t for nursing. Phenomenology i s a q u a l i t a t i v e research method that, unlike the more f a m i l i a r quantitative method, i s guided by the perspective that not a l l that i s human can be measured i n the mathematical sense, and further, that much of human experience cannot be revealed through a research method which i s o l a t e s i t from the l i v e d i n world (Giorgi, 1985; Lofland, 1971; Omery, 1983; Rist, 1979). Spiegelberg (1975) adds that the objective of phenomenology i s to describe phenomena "without theories of t h e i r causal explanation and as free as possible from unexamined preconceptions and presuppositions" (p.3). For these reasons, when human experience i s the focus of study, q u a l i t a t i v e research methods such as phenomenology are most often viewed as an alternate form of inquiry to quantitative or t r a d i t i o n a l s c i e n t i f i c methods (Sandelowski, 1986). The goal of phenomenology was considered to be congruent with the study of a question about what an experience i s l i k e . The e x p l i c i t goal of phenomenological inves t i g a t i o n includes discovery and description of the e s s e n t i a l structure of an experience from the perspective of those who have l i v e d i t (Merleau-Ponty, 1964; Psathas, 1977; Spiegelberg, 1970). Es s e n t i a l structure has been described by Psathas (1977) as "descriptions of those elements which are necessary to produce the appearance and recognition of an event" (p. 93), and by Merleau-Ponty (19 64) as, "that which cannot be varied 12 without the object (concrete experience) disappearing" (p. 70). Thus the v a l i d i t y of the es s e n t i a l structure of the experience as described by the researcher, rests on the recognition of the experience by those who have l i v e d i t . The outcome then i s what Psathas ref e r s to as an "i n t e r s u b j e c t i v e l y v e r i f i a b l e " account of the experience (p.93). In order to achieve the stated goal, the phenomenological method requires the researcher to be involved subjectively i n the ent i r e research process. The researcher gathers data by engaging i n t o t a l and active i n t e r a c t i o n with those who have l i v e d the experience; c o l l e c t s and analyses data i n a simultaneous, non-linear process, and derives conceptual and categorical explanations from in-depth analysis and inter p r e t a t i o n of the data themselves (Bruyn, 1970; F i l s t e a d , 1970; Giorgi, 1985; Lofland, 1971; Watson, 1985). O b j e c t i v i t y i n phenomenology does not a r i s e from objective behaviour of the researcher but from " f i d e l i t y to the phenomenon" ( C o l a i z z i , 1978, p. 52). The fact that phenomenology reveals the account of the experience through i n t e r a c t i o n with the subjects themselves was perceived as an ess e n t i a l requirement f o r discovery of the explanatory model of the experience of family caregivers. Phenomenologists recognize that behaviour that i s interpreted by an objective observer may have f o r the behaving subject "a very d i f f e r e n t meaning or no meaning at a l l " (Schutz, 1971, p.210) and that the i n d i v i d u a l and h i s 13 behaviour cannot be understood without asking how he appears to himself (Spiegelberg, 1975). In addition to i t s s u i t a b i l i t y f o r answering a question about experience, phenomenology has the p o t e n t i a l to contribute r e s u l t s s i g n i f i c a n t for nursing. Nursing i s frequently described as a profession that embraces a h o l i s t i c approach to patient care (Capra, 1982; O i l e r , 1982; Tinkle & Beaton, 1983). O i l e r maintains that t h i s approach requires the researcher to go "to people i n t h e i r circumstances where they are involved i n the world" (p. 179). The phenomenological method i s consistent with t h i s description of h o l i s t i c approach. Nurses place a high value on the subjective i n t e r n a l experiences of in d i v i d u a l s . Caring, which i s often referred to as the essence of nursing, involves an i n t e r a c t i v e , intersubjective and collaborative human to human rel a t i o n s h i p (Leininger, 1985; O i l e r , 1982; Omery, 1983; Tinkle & Beaton; 1983; Watson, 1985). "The subject of phenomenological research i s human experiences - t h e i r types, and t h e i r structures, along with t h e i r subjective meaning, essence and r e l a t i o n s h i p s " (Watson, p. 80), phenomenology therefore was determined an appropriate research method fo r t h i s study. D e f i n i t i o n of Terms The following are operational d e f i n i t i o n s of terms used i n the research question of t h i s study: 1. E l d e r l y : Persons of 60 or more years of age. 2. Alzheimer's Disease: An i r r e v e r s i b l e disease of unknown etiology which r e s u l t s i n unexpected and premature decay of the central nervous system t i s s u e and function (Whitney, 1985). 3. Experience: "An actual l i v i n g through an event; personally undergoing or observing some thing or things i n general as they occur" (Friend & Guralnik, 1958). 4. Caregiver: The family member providing care i n a care-giving dyad consisting of the care-receiver (husband) and the ind i v i d u a l providing care (wife) (Cantor, 1983, p.599). 5. I n s t i t u t i o n a l i z a t i o n : permanent placement i n a f a c i l i t y which provides care and supervision 24 hours a day. 6. I n i t i a l period of i n s t i t u t i o n a l i z a t i o n : approximately the f i r s t three months of permanent placement i n a care f a c i l i t y . Assumptions This study was based on the following assumptions: 1. The i n i t i a l period of i n s t i t u t i o n a l i z a t i o n of her spouse constitutes a s i g n i f i c a n t experience for the e l d e r l y wife caregiver. 2. The e l d e r l y wife caregiver who i n s t i t u t i o n a l i z e s her spouse i s able to describe that experience. Limitations The part i c i p a n t s i n t h i s study were considered to be q u a l i f i e d representatives for e l d e r l y wives who have experienced i n s t i t u t i o n a l i z a t i o n of a spouse with Alzheimer's disease. Only those caregivers who were w i l l i n g and able to 1 5 d e s c r i b e the experience o f i n s t i t u t i o n a l i z i n g t h e i r spouses were s e l e c t e d . S i n c e the r e a l i t y o f the experi e n c e o f the wives i s c o n s t r u c t e d w i t h i n the con t e x t o f t h e i r own l i v e s , they were a b l e t o r e v e a l o n l y the experi e n c e o f the c u l t u r a l and s o c i a l systems t o which they belong. Summary T h i s chapter has presented a d e s c r i p t i o n o f the background t o the problem, a framework f o r the c o n c e p t u a l i z a t i o n o f the problem, and a statement o f purpose. D e f i n i t i o n s , assumptions and l i m i t a t i o n s o f the study were a l s o d e s c r i b e d . A b r i e f r a t i o n a l e f o r s e l e c t i n g the phenomenological method was p r o v i d e d . The r i s i n g i n c i d e n c e of Alzheimer's d i s e a s e i n an aging s o c i e t y has r e s u l t e d i n i n c r e a s i n g l y f r e q u e n t i n t e r a c t i o n between p r o f e s s i o n a l and l a y c a r e g i v e r s when i t s v i c t i m s are i n s t i t u t i o n a l i z e d . The c o n f l i c t which f r e q u e n t l y r e s u l t s between these two c u l t u r e s has been c o n c e p t u a l i z e d w i t h guidance from Kleinman's ex p l a n a t o r y model as a problem a r i s i n g from d i f f e r e n c e s i n ex p l a n a t o r y models o f the exp e r i e n c e . The r e s u l t a n t need f o r p r o f e s s i o n a l s i n n u r s i n g t o understand the l a y experience from the p e r s p e c t i v e o f the c a r e g i v e r s themselves was i d e n t i f i e d . Because o f i t s unique focus on human experience from the s u b j e c t i v e v i e w p o i n t o f those who have l i v e d the experience, phenomenology was s e l e c t e d as the r e s e a r c h methodology most a p p r o p r i a t e t o c o n t r i b u t e the knowledge about the c a r e g i v e r s ' e x p e r i e n c e which i s needed i n n u r s i n g . Chapter 2 REVIEW OF SELECTED LITERATURE In t h i s chapter, a review of s e l e c t e d l i t e r a t u r e p r o v i d e s an overview of c u r r e n t knowledge c o n t r i b u t i n g t o unde r s t a n d i n g the experience o f c a r e g i v e r s who i n s t i t u t i o n a l i z e t h e i r spouses w i t h Alzheimer's d i s e a s e . The review i s d i v i d e d i n t o two s e c t i o n s . The f i r s t s e c t i o n r e l a t e s t o the c a r e g i v i n g experience i t s e l f . In t h i s s e c t i o n , l i t e r a t u r e c o n cerning the c a r e g i v i n g e x p e r i e n c e i n c h r o n i c i l l n e s s and i n Alzheimer's d i s e a s e , and the exp e r i e n c e o f spouses and of wives as c a r e g i v e r s i s reviewed. In the second s e c t i o n a review o f l i t e r a t u r e about the c a r e g i v e r ' s experience o f i n s t i t u t i o n a l i z a t i o n i s pre s e n t e d . L i t e r a t u r e r e l a t e d t o 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 and t o the c a r e g i v e r ' s e x p e r i e n c e f o l l o w i n g i n s t i t u t i o n a l i z a t i o n i s i n c l u d e d . The Experience o f C a r e g i v i n g C a r e g i v i n g i n Chro n i c I l l n e s s For many ye a r s , l i t e r a t u r e p e r t a i n i n g t o c a r e g i v i n g i n c h r o n i c i l l n e s s focused almost e x c l u s i v e l y on c h r o n i c a l l y i l l i n d i v i d u a l s s i n c e meeting t h e i r needs was seen as p r e r e q u i s i t e t o m a i n t a i n i n g them a t home. More r e c e n t l y , f a m i l y members who m a i n t a i n these i n d i v i d u a l s i n the home have r e c e i v e d r e c o g n i t i o n . S e v e r a l s t u d i e s have c o n t r i b u t e d t o awareness of the s i g n i f i c a n c e o f the l a y c a r e g i v e r ' s r o l e and o f the demanding nature o f t h i s r o l e . In an e a r l y d e s c r i p t i v e study o f c h r o n i c a l l y i l l and 17 disabled patients requiring home care, the r o l e of lay caregiver was l a b e l l e d the "responsor" r o l e because lay caregivers were expected to respond to and be responsible for patient needs (Golodetz, Evans, Heinritz and Gibson, 1969). Furthermore, these authors i d e n t i f i e d the ro l e as "an important resource i n the problem of medical manpower" (p. 385) . Isaacs (1971) provided support for t h i s assertion and added recognition of the onerous demands of the caregiving r o l e on caregivers. He studied reasons for admission of 280 patients from home to a g e r i a t r i c u n i t . Contrary to common b e l i e f that i n s t i t u t i o n a l i z a t i o n often occurs because of family neglect, most indivi d u a l s were cared for at home " u n t i l they became so disabled and made such heavy demands that t h e i r helpers could no longer cope" (p.284). "Intolerable s t r a i n " which was i d e n t i f i e d as the frequent cause of the patient's admission to hos p i t a l was described as "a burden of care a r i s i n g from the patient's i l l n e s s which threatened e i t h e r the physical or mental well-being of the r e l a t i v e s or both" (p. 283). Patient problems most often rel a t e d to in t o l e r a b l e s t r a i n included immobility, incontinence and mental abnormality. The r e s u l t s of a l a t e r study by Sanford (1975) provided support f o r Isaac's work. Caregivers i n the process of admitting t h e i r dependent member were asked to i d e n t i f y problems which would have to be a l l e v i a t e d i n order to restore a to l e r a b l e s i t u a t i o n at home. Sleep disturbance 18 (due to night wandering and immobility), and f e c a l incontinence were problems most often i d e n t i f i e d . A l l of these problems are c h a r a c t e r i s t i c of the Alzheimer patients. Research concerning caregiving i n chronic i l l n e s s thus has contributed to awareness of the s i g n i f i c a n c e of the caregiver's r o l e i n maintaining home care of the c h r o n i c a l l y i l l , recognition of the hardship i n f l i c t e d by the caregiving r o l e and i d e n t i f i c a t i o n of patient symptoms considered to be sources of greatest hardship. Caregiving i n Dementia Growing awareness of the es s e n t i a l contribution of lay caregivers i n keeping the c h r o n i c a l l y i l l , the disabled and the e l d e r l y out of i n s t i t u t i o n s has guided researchers concerned with dementia i n general and Alzheimer's disease i n p a r t i c u l a r to explore the e f f e c t s of caregiving on the caregiver. One of the expectations guiding t h i s research was that r e l i e f from problems such as immobility, incontinence and sleep disturbance would reduce caregiver burden and make continued home care more to l e r a b l e . Such studies have not succeeded i n i d e n t i f y i n g factors which could ease burden. They have, however, contributed s i g n i f i c a n t l y to awareness of the immediate and long-term impact of caregiving on the caregiver and on caregiver health. Z a r i t , Reever, and Bach-Peterson (1980) conducted a study of 29 people with s e n i l e dementia and t h e i r caregivers for the purpose of i d e n t i f y i n g interventions which would reduce sources of burden. Caregivers responded to a "burden 19 interview" designed to measure the degree of emotional, physical, s o c i a l and f i n a n c i a l s u f f e r i n g which resulted from caring f o r t h e i r r e l a t i v e . Degree of burden was related to measures of s o c i a l support, q u a l i t y of the r e l a t i o n s h i p and severity of the i l l n e s s . None of the behaviour variables, including those patient problems i d e n t i f i e d as contributing to i n t o l e r a b l e s t r a i n i n e a r l i e r research, correlated with perceived caregiver burden. The authors concluded that subjective factors were more important than severity of i l l n e s s i n determining the degree of burden. Gilhooly (1984) adopted a d i f f e r e n t approach to studying the e f f e c t s of the caregiving experience on the caregiver but found s i m i l a r r e s u l t s . Rather than focusing on caregiver burden, she focused on correlates or mediators of caregiver well-being. She examined relationships among variables such as l e v e l of impairment, duration of support, marital status, age, sex, r o l e r e l a t i o n s h i p and qual i t y of the re l a t i o n s h i p , and measurements of morale and mental health. Contrary to researcher's expectations, l e v e l of patient impairment was not s i g n i f i c a n t l y associated with morale and mental health of caregivers. Although the researcher assumed that the impact of caregiving f o r a demented person would be negative, the support for t h i s assumption was marginal. At the same time, however, "caregivers expressed severe d i s t r e s s during interviews and reported experiencing considerable burden" (p.40). Gilhooly's r e s u l t s , l i k e those of Z a r i t and associates demonstrate that there i s a s i g n i f i c a n t subjective 20 component which mediates the impact of other variables on the caregiving experience. Recognizing the conceptual confusion created by the varying approaches to measuring the e f f e c t s of caregiving on the caregiver, Poulshock and Deimling (1984) proposed that the concept of burden r e f e r to the subjective interpretations by caregivers of problems that r e s u l t from caregiving, while impact r e f e r to objective e f f e c t s which are more e a s i l y measured. They were c r i t i c a l of studies i n which combinations of subjective responses and objective measures were used i n the operational d e f i n i t i o n s of the e f f e c t s of caregiving. The model proposed was based on the assumption that "the burdens caregivers experience are the r e s u l t of t h e i r highly personalized and i n d i v i d u a l i z e d responses to s p e c i f i c caregiving contexts" (p.231). The r e s u l t s of t h e i r study of 233 elders who were mentally and or p h y s i c a l l y impaired confirmed the d i s t i n c t i o n between burden and impact. They found that burden measured as the caregivers' subjective perceptions was the mediating force between the elders' impairments and the impact of caregiving on caregivers. Their findings indicate that impairment, burden and impact resulted i n both independent and additive e f f e c t s on the caregiver. This explains why studies which do not d i f f e r e n t i a t e these concepts, such as those of Z a r i t and associates (1980) and Gilhooly (1984) , f a i l e d to i d e n t i f y variables, e s p e c i a l l y patient problems which, i f a l l e v i a t e d , could reduce caregiver s t r a i n . The 21 conclusion of the study supports the suggestion that the caregivers' subjective experience contributes s i g n i f i c a n t l y to the impact of the caregiving experience on caregiver l i v e s . The need for recognition of the subjective nature of the experience i s a theme appearing repeatedly i n l i t e r a t u r e concerning a l l aspects of the caregiving experience (Cantor, 1983; Chenoweth & Spencer, 1986; Goodman, 1986; Given, C o l l i n s & Given, 1988; Linn & Gurel, 1969). Therefore, to understand the caregiver's experience of i n s t i t u t i o n a l i z a t i o n as part of the t o t a l caregiving experience, i t i s e s s e n t i a l that the subjective perceptions of the caregivers be revealed. Spouses as Caregivers The s i g n i f i c a n c e of the spouses' contribution to caregiving outside of i n s t i t u t i o n s has been c l e a r l y recognized i n the l i t e r a t u r e . According to Shanas (1979) and Johnson (1983), a p r i n c i p l e of s u b s t i t u t i o n operates to determine who within a family accepts the caregiving r o l e . This p r i n c i p l e holds that support i s extended most often by one family member at a time, and that, i n s e r i a l order, the spouse functions as the primary caregiver; i n the absence of the spouse, a c h i l d assumes the r o l e ; and i n the absence of off s p r i n g , another member i s responsible. The degree of s t r a i n experienced by spouse caregivers has also been documented. Cantor (1983) conducted a study of 111 caregivers for the purpose of discovering ways of strengthening informal caregiving c a p a c i t i e s . Caregivers, who varied i n age, sex and rel a t i o n s h i p to the patient, were asked a serie s of questions designed to measure s t r a i n and the impact of caregiving on private l i f e . The re l a t i o n s h i p of the caregiver to the care-receiver contributed the greatest variance i n caregiver s t r a i n . The type of caregiver at greatest r i s k was the spouse. A l l caregivers reported a negative impact on private l i f e , but the impact was most severe i n the case of spouses. Cantor concluded that "the amount of s t r a i n and disruption of d a i l y l i f e i s very d i f f e r e n t for d i f f e r e n t groups of caregivers", and added that, "the data underscore the danger of global solutions" (p.603). In s p i t e of the degree of s t r a i n experienced by spouse caregivers, the l i t e r a t u r e provides support for the suggestion that these people, many of whom are old and f r a i l themselves, are the l a s t to r e l i n q u i s h care to professionals (Chenoweth & Spencer, 1986; Colerick & George, 1986; Smallegan, 1985; Soldo & Myllyluoma, 1983). The fac t that spouses are f i r s t i n l i n e for s e l e c t i o n as caregivers, are at greatest r i s k for s t r a i n and are most reluctant to r e l i n q u i s h care suggests that t h e i r need for support requires p a r t i c u l a r attention. Wives as Caregivers In the l i t e r a t u r e , the majority of caregivers are female, usually a wife or daughter. In fact, the prevalence of women in the caregiving r o l e prompted Sommers (1985) to describe 23 caregiving as a women's issue. Accordingly, the experience of wives as caregivers has received attention. • Fengler and Goodrich (1979) s p e c i f i c a l l y i d e n t i f i e d wives of e l d e r l y disabled men as a health care concern; they described the wives as "the hidden patients" (p.175). The researchers estimated that two t h i r d s of the men i n t h e i r study would have been i n s t i t u t i o n a l i z e d were i t not for the care of t h e i r wives. The purpose of the study was to determine the cost of the wives' contribution by examining t h e i r s p e c i a l needs and problems. Results showed that depending on the degree of d i s a b i l i t y , the wives of the disabled men suffered from low l i f e s a t i s f a c t i o n , r o l e overload, loss of intimacy and companionship, i s o l a t i o n and loss of s o c i a l support. Fengler and Goodrich concluded that, "Many of the wives need help and support as much as t h e i r husbands do" (p.183). Because wives who are caregivers represent a very large number of those who are also at greatest r i s k for caregiver s t r a i n , they have been selected as the subjects of t h i s study. The Caregiver's Experience of I n s t i t u t i o n a l i z a t i o n Research concerning the caregiver's experience of i n s t i t u t i o n a l i z a t i o n has had two major f o c i : the decision to i n s t i t u t i o n a l i z e and the experience of the caregiver following i n s t i t u t i o n a l i z a t i o n . The Decision to I n s t i t u t i o n a l i z e Approaches to studying the decision to i n s t i t u t i o n a l i z e have been directed towards finding ways of preventing or at l e a s t delaying i n s t i t u t i o n a l i z a t i o n . Regardless of t h e i r purpose, these studies have contributed knowledge about the predictors of the decision, resistance to the decision and the experience of deciding which i n turn have contributed to knowledge about the caregivers' experience of i n s t i t u t i o n a l i z a t i o n . Predictors of i n s t i t u t i o n a l i z a t i o n . Some caregivers care for t h e i r patient at home for many years while some decide to i n s t i t u t i o n a l i z e t h e i r patient much more quickly. Recognition of the importance to the health care system of prevention of premature or unnecessary i n s t i t u t i o n a l i z a t i o n has stimulated research designed to study the v a r i a b i l i t y among caregivers regarding predictors of the decision to i n s t i t u t i o n a l i z e t h e i r patients. Two such studies, one by Colerick and George (198 6) and one by Z a r i t , Todd and Z a r i t (1986) were designed to i d e n t i f y v a riables which could predict a placement decision on the part of an Alzheimer's caregiver. Structured interview methods were used i n both studies to gather data about s i m i l a r variables, the major difference being that Z a r i t and associates measured burden as a variable, and Colerick and George measured caregiver well-being. Findings of both studies indicated that subjective factors, such as caregiver perception of well-being and burden, d i f f e r e n t i a t e d those who decided to place t h e i r patient from those who continued to care for them at home while objective indicators of the severity of dementia did not. These findings mirror those c i t e d e a r l i e r regarding the importance of the subjective perception of the caregiving experience i n measuring the e f f e c t of the caregiving experience on the caregiver (Gilhooly, 1984; Poulshock & Deimling, 1984; Z a r i t et a l . , 1980). The impact of subjective caregiver experience on both degree of burden and the decision to i n s t i t u t i o n a l i z e prompted Z a r i t and associates to suggest that "the v a r i a b i l i t y i n caregiver's reactions i s , i n fact, of major importance for planning interventions to a l l e v i a t e t h e i r s t r e s s " (p.265). These studies again point to the need for studying the caregivers' subjective experience. Gilhooly (1986) studied factors associated with caregivers' preference for i n s t i t u t i o n a l care i n s e n i l e dementia. Data were gathered i n intensive semi-structured interviews with caregivers. Similar to the findings of Z a r i t and associates (1986) and Colerick and George (1986), regarding impact of the caregiving experience on the caregiver, neither the dementing dependant's c h a r a c t e r i s t i c s nor the objectively-measured psychological well-being of the caregiver were s i g n i f i c a n t l y correlated with preference for i n s t i t u t i o n a l care. However, r e s u l t s did indicate that preference f o r i n s t i t u t i o n a l care was p o s i t i v e l y correlated with lower caregiver age, and with employment. Since the spouse caregivers of patients with Alzheimer's disease are generally older, and not employed, these people would most l i k e l y belong to a group with l e a s t preference f o r i n s t i t u t i o n a l care. Gilhooly (1986) also found that the clo s e r the blood/role r e l a t i o n s h i p and the better the q u a l i t y of the re l a t i o n s h i p p r i o r to the development of dementia, the lower the preference for i n s t i t u t i o n a l care. She observed that "many of the spouses i n the sample took t h e i r marriage vows quite l i t e r a l l y , and said they would continue with home care x u n t i l death do us p a r t / n (p. 169). She also observed that while some caregivers f e l t unwilling to continue giving care, they strongly wished to avoid i n s t i t u t i o n a l i z a t i o n . So strong was t h e i r desire to avoid i n s t i t u t i o n a l i z a t i o n that caregivers often stated that the dementing r e l a t i v e ' s death would be preferable to i n s t i t u t i o n a l care. Reason f o r resistance to i n s t i t u t i o n a l i z a t i o n i s another subject which has received attention i n l i t e r a t u r e . Resistance to i n s t i t u t i o n a l i z a t i o n . Two major sources of caregiver resistance to i n s t i t u t i o n a l i z a t i o n have been documented: attitudes toward i n s t i t u t i o n a l care and the meaning of the caregiving r o l e . The p r e v a i l i n g negative s o c i a l attitude toward i n s t i t u t i o n a l care for the ch r o n i c a l l y i l l has been l a b e l l e d as a common b e l i e f or common stereotype (Lieberman, 1969). Davis (198 0) described t h i s stereotype i n a q u a l i t a t i v e study which included examination of the family's decision to keep a mentally or p h y s i c a l l y disabled family member at home. A composite of the responses of 30 families to open-ended questions revealed that the families described i n s t i t u t i o n s as "too regimented, breeding dependency, o f f e r i n g depersonalized rather than i n d i v i d u a l i z e d care and not meeting the patient's special needs for privacy, comfort and own developmental pace" (p. 478) . Other findings frequently c i t e perceptions that i n s t i t u t i o n s contribute to further decline i n health and even hastened death, and that i n s t i t u t i o n s are dumping grounds for unwanted e l d e r l y r e l a t i v e s (Brock & O'Sullivan, 1985; Lieberman, 1969; Shuttlesworth, Rubin, & Duffy, 1982). This negative image encourages resistance to placement and contributes to the g u i l t which caregivers experience-following a decision to i n s t i t u t i o n a l i z e (Annett, 1986; Mace & Rabins, 1981). The meaning of the caregiving r o l e for the caregiver i s another major reason for resistance to i n s t i t u t i o n a l i z a t i o n . As the r o l e expands, dominates a l l other roles and i s defined i n a p o s i t i v e way by the caregiver, i t becomes a r o l e that i s d i f f i c u l t to r e l i n q u i s h . In a longitudinal study of family supports to the impaired e l d e r l y , Johnson and Catalano (1983) demonstrated the way i n which the meaning of the caregiving r o l e was influenced by what was i d e n t i f i e d as caregivers' adaptive strategies f o r a l l e v i a t i n g the s t r a i n and burden of t h e i r r o l e s . Structured and unstructured data gathered from e l d e r l y caregivers revealed that caregivers used "enmeshing techniques" (p. 617). The f i r s t technique, used mainly by couples, was s o c i a l regression. As patient dependency persisted, the r e l a t i o n s h i p with the caregiver i n t e n s i f i e d often to the exclusion of other r e l a t i o n s h i p s . As a r e s u l t , 28 the partners were increasingly forced to depend upon each other for need s a t i s f a c t i o n . The second technique was r o l e entrenchment through which caregiving was accepted as a permanent, f u l l - t i m e r o l e that took precedence over other r o l e s . According to Goldstein, Regnery and Wellin (1981), a s i m i l a r s i t u a t i o n l a b e l l e d r o l e c o n s t r i c t i o n occurs when the caregiver becomes almost as housebound as the patient, a l l other roles and functions become subordinate, and functions of caregiving increasingly demand the caregiver's time and energy. Caregivers i n Johnson and Catalano's study managed ro l e c o n s t r i c t i o n by redefining the exchange r e l a t i o n s h i p as one which provided a l t r u i s t i c rewards of enhanced self-esteem and a sense of competence. Thus the caregiving r o l e was seen as g i v i n g meaning to l i f e . S i m i l a r l y , Davis (1980) found that maintaining the patient at home provided some family members with purpose or meaningfulness. The r e l a t i o n s h i p gave pleasure and closeness. In addition, the caregiving r o l e f u l f i l l e d what families believed was t h e i r i n d i v i d u a l and moral r e s p o n s i b i l i t y . H i r s c h f e l d (1983) reported that "mutuality" d i f f e r e n t i a t e d caregivers who placed t h e i r patients from those who continued to care for them at home. Mutuality resulted from the caregiver's a b i l i t y to f i n d g r a t i f i c a t i o n i n the r e l a t i o n s h i p and meaning from the caregiving s i t u a t i o n ; i t included perception that the impaired person reciprocated by v i r t u e of h i s or her existence. For these 29 caregivers caregiving meant never being alone. Because women, most of whom are spouses, most frequently occupy the caregiver r o l e , the meaning of the caregiving r o l e to them i s p a r t i c u l a r l y s i g n i f i c a n t . Larson (1985), i n a study of wives caring for e l d e r l y husbands at home, reported that the wives highly valued the caregiving r o l e , and that accepting the r o l e and the attendant s a c r i f i c e s was " t h e i r duty as wives" (p. 62). The wife's tenacity i n maintaining her husband at home revealed the values she held about her r o l e s as wife, homemaker and caregiver. These roles had "come to constitute her l i f e ' s vocation (p.84). S i m i l a r l y , Davis (1980) describes womens' perception of the caregiving r o l e as follows: The woman i n the family perceived the care-taking r o l e as the essence of mothering, nurture, and the apex of dependency, which she accepted as mostly p o s i t i v e under the circumstances. She placed a high p r i o r i t y on interpersonal r e l a t i o n s and a p a r t i c u l a r r e l a t i o n s h i p with the disabled adult gave her a meaningful substitute for other relationships, an a l t e r n a t i v e to g u i l t and i n many ways protected her s o c i a l l y and psychologically. With few exceptions she accepted the t r a d i t i o n a l female r o l e d e f i n i t i o n s . She often f e l t that as long as the disabled i n d i v i d u a l stayed at home she would not be l e f t alone (p.480). Thus resistance to i n s t i t u t i o n a l placement a r i s e s from the negative s o c i a l perception of i n s t i t u t i o n a l care and from 30 the f a c t that the caregiving r o l e occupies a central place i n the l i v e s of the caregivers. The reason f o r maintaining the disabled person at home for as long as possible i s generally a combination of an a f f e c t i v e bond to the patient and an aversion to nursing home placement (Goldstein et a l . , 1981). In s p i t e of strenuous resistance, however, i n s t i t u t i o n a l i z a t i o n of an Alzheimer's patient i s almost in e v i t a b l e (Whitney, 1985; Williams, 1986). The experience of deciding. Regardless of the burden and the many problems which r e s u l t from caregiving, the decision to i n s t i t u t i o n a l i z e appears to be a d i f f i c u l t one for most caregivers. In a study designed to examine the experience of fami l i e s throughout the course of Alzheimer's disease, the experiences of caregivers who i n s t i t u t i o n a l i z e d t h e i r patient were investigated (Chenoweth & Spencer,1986). Those who had i n s t i t u t i o n a l i z e d t h e i r r e l a t i v e were asked to discuss t h e i r reasons for choosing long term care and t h e i r s a t i s f a c t i o n with the decision. Reasons given for the decision to i n s t i t u t i o n a l i z e included behavioural problems, incontinence, combativeness, wandering, and lack of sleep, a l l of which had been recorded previously i n the l i t e r a t u r e (Isaacs, 1971; Sanford, 1975; Smallegan, 1981). Some said that the decision was forced upon them when they became i l l or injured during care. However, almost 75% gave as t h e i r reason that they "couldn't take i t any more" and that "24 hour care was impossible". Some said that they "simply wore out" (p.271). Some caregivers were convinced by the recommendation of the doctor or family members that i t was time for i n s t i t u t i o n a l i z a t i o n . This happened when most said that they "were too t i r e d to make decision or to think c l e a r l y " (p.271). Some resented such outside decision-making while some appreciated i t . For some, having others make the decision eased g u i l t f e e l i n g s . This s i t u a t i o n was also reported by Smallegan (1985) who found that "by the time the decision was made most patients had been cared f o r at home for a period of time and the people at home were so stressed that ... they were ready to decide on nursing home placement even though the decision was p a i n f u l " (p.284). Consideration therefore must be given to the p o s s i b i l i t y that caregivers deciding to i n s t i t u t i o n a l i z e under these s t r e s s f u l circumstances and i n spite of t h e i r strenuous resistance may themselves require care. The Caregiver's Experience Following I n s t i t u t i o n a l i z a t i o n The f a c t that caregivers may continue to require considerable support a f t e r placement of t h e i r patient can be inf e r r e d from t h e i r reluctance to resort to placement i n the f i r s t place, and from the fact that many of the problems r e s u l t i n g from the caregiving r o l e are of the type that are l i k e l y to p e r s i s t a f t e r i n s t i t u t i o n a l i z a t i o n . Problems such as s o c i a l i s o l a t i o n , loss of friendship, destruction and di s i n t e g r a t i o n of family t i e s , giving up of l e i s u r e and volunteer a c t i v i t i e s and f a i l u r e to look to the future have a l l been i d e n t i f i e d as re s u l t s of the huge impact of caregiving on caregivers 7 l i v e s (Chenoweth & Spencer, 1986; Fengler & Goodrich, 1979; George & Gwyther, 1986; Robertson & Reisner, 1982). In spite of the fact that such problems are u n l i k e l y to be solved completely with i n s t i t u t i o n a l i z a t i o n , l i t t l e research was found which was concerned with the experience of caregivers who had decided to i n s t i t u t i o n a l i z e t h e i r demented patients. Two studies, though not designed primarily to examine the caregivers' experience following i n s t i t u t i o n a l i z a t i o n , provided indications that caregivers may continue to require care. In a longitudinal study of 376 informal caregivers of older persons with Alzheimer's disease or a related disorder, Colerick & George (1986) assessed patient c h a r a c t e r i s t i c s , caregiver c h a r a c t e r i s t i c s , and caregiver burden, and compared the data for those who continued to care for t h e i r patients at home to those who had decided to i n s t i t u t i o n a l i z e . Data were gathered on two occasions, separated by one year, through administration of a questionnaire. Those who had i n s t i t u t i o n a l i z e d t h e i r patients reported more s a t i s f a c t i o n with l e i s u r e time as well as greater l i k e l i h o o d of using psychotrophic drugs and decreased support from friends. The researchers attributed the blending of negative and p o s i t i v e changes to the recency of i n s t i t u t i o n a l i z a t i o n (which i n a l l cases was within one year). In addition, the findings prompted the researchers to suggest that "upon i n s t i t u t i o n a l i z a t i o n of the patient the s o c i a l network diss i p a t e s , leaving the caregiver r e l a t i v e l y i s o l a t e d " and that r e l i n q u i s h i n g care to professionals may not r e l i e v e the caregiving burden" (p.498). This i s consistent with findings of Poulshock and Deimling (1984) described e a r l i e r , that the e f f e c t of the emotional burden of caregiving on the caregiver has both independent and additive r e l a t i o n s h i p s to the impact of providing physical care. The emotional e f f e c t may well continue even when the physical demand i s r e l i e v e d . The study by Z a r i t and associates (1986) described e a r l i e r also indicates that the need for caregiver support continues a f t e r the dependent's i n s t i t u t i o n a l i z a t i o n , and suggests that s p e c i a l consideration i s needed for caregiver wives. Wives who had placed t h e i r husbands a l l reported minimal s o c i a l support. The researchers suggested that "the prospect that some caregivers remain i s o l a t e d and unsupported a f t e r placing a spouse should be considered" (p.265). Following i n s t i t u t i o n a l i z a t i o n , problems c i t e d most frequently were lack of s t a f f preparation f o r care of the Alzheimer's patient, and a f e e l i n g of f r u s t r a t i o n with the d i f f i c u l t y of the period of t r a n s i t i o n from the family's home to the nursing home. The t r a n s i t i o n from home to i n s t i t u t i o n i s a d i f f i c u l t time f o r an e l d e r l y i n d i v i d u a l , frequently referred to i n the l i t e r a t u r e as a c r i s i s f or those involved (Chenitz, 1983; Locker, 1982; Solomon, 1983). There i s much evidence that r a d i c a l environmental change may be responsible for many of the harmful psychological and physical e f f e c t s often at t r i b u t e d to l i v i n g i n an i n s t i t u t i o n (Lieberman, 1969). D i f f i c u l t i e s experienced by Alzheimer's patients during the t r a n s i t i o n from home to i n s t i t u t i o n are understandable given t h e i r lack of adaptability. Mace and Rabins (1981) advise families that strange situations, confusion, and noises can t r i g g e r "catastrophic" reactions. H a l l and K i r s c h l i n g (1986) describe these reactions as overreactions p r e c i p i t a t e d by the b r a i n - f a i l e d person's anxiety i n "a si t u a t i o n i n which he perceives only nameless t e r r o r and desires only escape" (p.133). Catastrophic behaviours include outbursts of noisiness, a g i t a t i o n and sometimes combativeness, and withdrawal from usual a c t i v i t i e s such as eating and t a l k i n g (Hall & K i r s c h l i n g , 1986; Mace & Rabins, 1981). Certainly, admission to a new f a c i l i t y has a l l of the components necessary to t r i g g e r such a reaction. Such a s i t u a t i o n may reinforce common b e l i e f s regarding the negative 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 , thus increasing caregiver stress and g u i l t . Problems faced by caregivers who i n s t i t u t i o n a l i z e t h e i r patient have also been acknowledged. Mace and Rabins (1981) describe the adjustment as a d i f f i c u l t time i n which the caregiver, who i s t i r e d from e f f o r t s of arranging placement i s also experiencing feelings of sadness, g r i e f and loss, and g u i l t that keeping the in d i v i d u a l at home was not possible. Annett (1986) describes the experience of e l d e r l y spouses as one i n which they face major reorganization of t h e i r l i v e s while under tremendous stress. She says: Separation of a married couple i s a traumatic experience at any age, but for 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 can be the ultimate loss among many losses experienced through the aging process (p.12). In addition, the stress of adjustment f o r the e l d e r l y whose a b i l i t y to cope with excessive pressure i s already reduced, poses a threat to t h e i r mental health (Locker, 1982). I t has been the researcher's experience that professional s t a f f i n i n s t i t u t i o n s do not always recognize the s t r a i n experienced by caregivers during the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n . There i s a tendency to expect that the caregiver should be happy once the burden of providing physical care has been removed. Yet situ a t i o n s as described by Goldstein (1983) a r i s e i n which the a g i t a t i o n and demands of the caregiver spouse caused "chaos on the nursing f l o o r " (p.42). Tremendous po t e n t i a l exists for the perceptions of professionals to clash with those of caregivers at the time of i n s t i t u t i o n a l i z a t i o n . Tensions often a r i s e because the spouse attempts to defend a threatened spousal r o l e that i s incompatible with the new set t i n g (Schmidt, 1987). Discovery of incongruent r o l e expectations between families prompted the suggestion that " i t i s conceivable that some members i n eit h e r group may perceive incongruent expectations i n the other group and, therefore, be less l i k e l y to perform appropriately a p a r t i c u l a r caring task" (Shuttlesworth et a l . , 1982, p.206). Only one study (Brandwein, Postoff & Steinberg, 1979) was 3 6 found which investigated the caregiver's experience following i n s t i t u t i o n a l i z a t i o n . Because the study was unpublished, complete d e t a i l s were not av a i l a b l e ; however, the findings provide support for caregivers' continuing need for care. The study, descriptive i n design, focused on the l i f e s t y l e of spouses (N=18) who had placed t h e i r partners because of chronic i l l n e s s , 40% of whom were brain damaged. Findings related to two areas of the caregiver's l i v e s : t h e i r l i v e s while v i s i t i n g t h e i r husbands and t h e i r l i v e s i n the community. When v i s i t i n g t h e i r husbands, 50% of the spouses reported that they continued to provide physical care. D i s s a t i s f a c t i o n with the qu a l i t y of care, the need to f e e l needed, the need to be perceived by others as caring and devoted partners and the need to maintain marital s t a b i l i t y for both themselves and t h e i r partners were given as the reasons. When i n the community, they described themselves as being i n a state of limbo, having a l l of the disadvantages of being widows but none of the advantages. As a r e s u l t , they suffered c o n f l i c t , g u i l t and ambivalence. I t i s evident that the caregivers' burden i s not l i k e l y to be completely r e l i e v e d through i n s t i t u t i o n a l i z a t i o n . Also, i t i s evident that the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n i s a time during which d i f f e r i n g perceptions and expectations of lay caregivers and professional s t a f f can p o t e n t i a l l y r e s u l t i n i n e f f e c t i v e and inappropriate support for the caregiver. However, no studies were found which were designed to examine the experience of the e l d e r l y wife caregiver of the Alzheimer's patient when she i n s t i t u t i o n a l i z e s her spouse. Summary In t h i s chapter, l i t e r a t u r e which contributes to knowledge and understanding of the caregiver's experience of caregiving and of i n s t i t u t i o n a l i z a t i o n has been reviewed. Much support has been c i t e d for the notion that the way i n which caregiving i s experienced depends on the caregiver's subjective perception of that experience. Throughout the l i t e r a t u r e , the immense contribution of wives as caregivers i s recognized. Wives are among the largest group of caregivers, the group most reluctant to re l i n q u i s h care and the group of caregivers at greatest r i s k f o r negative consequences of caregiving. Studying t h e i r p a r t i c u l a r experience i s therefore important. Studies concerning the caregiver's experience of i n s t i t u t i o n a l i z a t i o n have, for the most part, been concerned with the decision to i n s t i t u t i o n a l i z e . L i t t l e has been documented about the caregiver's subjective perceptions of the caregiving experience i n predicting i n s t i t u t i o n a l i z a t i o n . Tremendous resistance to i n s t i t u t i o n a l i z a t i o n has been att r i b u t e d to the negative image of i n s t i t u t i o n a l care and to the central meaning of the caregiving r o l e i n caregiver l i v e s . In spi t e of t h i s resistance, i n the case of Alzheimer's caregivers, the decision must eventually be made, usually under s t r e s s f u l circumstances. In addition, many long-term e f f e c t s of caregiving and persistent problems 38 indicate that upon i n s t i t u t i o n a l i z a t i o n of t h e i r patient, caregivers themselves may require care. The l i k e l i h o o d that appropriate support w i l l be provided fo r caregivers i s diminished by the c o n f l i c t which often a r i s e s between professionals and family caregivers at the time of i n s t i t u t i o n a l i z a t i o n . Studying the experience of e l d e r l y caregiver wives from t h e i r own perspective i s therefore important to optimizing professional care to such in d i v i d u a l s . The need for professionals to discover the caregiver's explanatory model of the experience i s c l e a r . Chapter 3 METHODOLOGY Phenomenology was the research method of t h i s study. This method was considered to be most appropriate f o r answering the question about the caregiver's experience since the goal of phenomenology i s to describe the e s s e n t i a l structure of l i v e d experience including the meanings that the experiences had for the in d i v i d u a l who pa r t i c i p a t e d i n them (Omery, 1983). In t h i s chapter, implementation of the phenomenological approach i s described including p a r t i c i p a n t s s e l e c t i o n , data c o l l e c t i o n and analysis and e t h i c a l considerations. Selection of Participants C r i t e r i a f o r Selection C r i t e r i a for s e l e c t i o n of partic i p a n t s were as follows. They: 1. were women aged 60 years or older. 2. were of Anglo-Canadian ethno-cultural background. 3. had cared for husbands with Alzheimer's disease at home. 4. had husbands who had been l i v i n g i n an i n s t i t u t i o n for one year or l e s s . 5. were w i l l i n g and able to express t h e i r feelings about i n s t i t u t i o n a l i z i n g t h e i r husbands Rationale One s p e c i f i c group of caregivers (wives over the age of 60) was selected for study since the l i t e r a t u r e indicates that mixing of groups, for example, daughters and wives, 40 tends to obscure differences i n the experiences each may be having (Cantor, 1983). Caregivers of t h i s age, sex and re l a t i o n s h i p to the patient were selected since they have been i d e n t i f i e d as the largest group of caregivers and, as spouses, are among those most reluctant to r e l i n q u i s h care to professionals and at greatest r i s k f or s t r a i n . Anglo-Canadian wives were selected because c u l t u r a l v a r i a t i o n s might influence the experience of i n s t i t u t i o n a l i z a t i o n . Comparison of caregivers who d i f f e r i n age, sex, c u l t u r a l background and re l a t i o n s h i p to the patient was beyond the scope of t h i s study. The c r i t e r i o n of willingness and a b i l i t y to express feelings about i n s t i t u t i o n a l i z a t i o n of t h e i r husbands was necessary to obtain "the most i n s i g h t f u l data possible" (Morse, 1986, p. 183) . Recency of the experience should be considered i n phenomenology (Omery, 1983). Chenoweth & Spencer (1986) agree: "the passage of time i s l i k e l y to a f f e c t perceptions of experience" (p.272). Furthermore, the f i r s t three months of i n s t i t u t i o n a l i z a t i o n has been i d e n t i f i e d as the most d i f f i c u l t f or those involved (Brock & O'Sullivan, 1985; Chenitz, 1983; Locker, 1982). Therefore, time since i n s t i t u t i o n a l i z a t i o n was r e s t r i c t e d to one year or l e s s . During t h i s time period, caregivers were expected to be experiencing the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n or to have experienced i t recently enough to ensure accurate and v i v i d memory of the experience. 41 Selection Procedure In q u a l i t a t i v e research, because of the volume of data which must be analyzed the number of p a r t i c i p a n t s i s small (Omery, 1983; Morse, 1986; Sandelowski, 1986). The exact number i s not decided i n advance but i s determined by the t h e o r e t i c a l needs of the research (Morse, 1986). I n i t i a l l y p a r t i c i p a n t s are selected because they are able to illuminate the experience being studied, then additional p a r t i c i p a n t s are selected u n t i l understanding of the experience i s coherent and confirmed and no new information i s being provided (Sandelowski, 1986; Morse, 1986). Adequacy of sampling i s evaluated by quality, completeness and amount of information rather than by number of subjects (Morse, 198 6). The p a r t i c i p a n t s were not known previously to the researcher. They were contacted through the Alzheimer's Society support groups and through one long term care f a c i l i t y i n the greater metropolitan area of a western Canadian c i t y . A f t e r obtaining approval f o r the study from the agencies, the researcher met with agency representatives and support group leaders to explain the study further. Support group leaders, a s o c i a l worker from one long term care f a c i l i t y and an Alzheimer's Society volunteer d i s t r i b u t e d l e t t e r s (see Appendix A) explaining the study to p o t e n t i a l p a r t i c i p a n t s who f i t the c r i t e r i a . Attached to these l e t t e r s of explanation were forms for i n d i v i d u a l s to indicate t h e i r i n t e r e s t i n hearing more about the study and willingness to have telephone contact with the researcher (see Appendix B). The researcher contacted each of the 10 ind i v i d u a l s who returned the forms, explained the study i n d e t a i l , answered any questions and, when appropriate, arranged an appointment for an interview. In t h i s stage of the research convenience sampling was employed; the par t i c i p a n t s were not selected based on a b i l i t y to contribute but on a b i l i t y to meet sel e c t i o n c r i t e r i a , a v a i l a b i l i t y to the researcher and willingness to p a r t i c i p a t e (Morse, 1986). Two of those contacted did not f i t study c r i t e r i a and so were not interviewed. The remaining eight agreed to p a r t i c i p a t e i n the study. Participants r e c r u i t e d i n t h i s manner included s i x who were contacted through leaders of Alzheimer's Society support groups, one who was contacted through the Alzheimer's Society o f f i c e and one who was contacted through the long term care f a c i l i t y i n which her husband l i v e d . During the f i r s t v i s i t p a r t i c i p a n t s were again provided with information explaining the study and were asked to sign a consent (see Appendix C). Once written consent was obtained and a b r i e f demographic data sheet was completed (see Appendix D) the interview began. When the eight part i c i p a n t s o r i g i n a l l y r e c r u i t e d had been interviewed twice, no new information was being given, the data were coherent and preliminary meaning units were confirmed. Therefore the t h e o r e t i c a l needs of the research were s a t i s f i e d and no further p a r t i c i p a n t s were recr u i t e d . C h a r a c t e r i s t i c s Participants ranged i n age from 64 to 78 years with an average age of 72 years. Their husbands ranged i n age from 72 to 81 years with an average age of 75 years. A l l but one of the wives i n the study had been married only once. This was the second marriage for one whose f i r s t husband had died. The marriages had been long-lasting, seven of them l a s t i n g f o r more than 40 years. The longest was 54.5 years and the shortest was the second marriage of 14 years. Seven of the couples had adult children. The childr e n of one couple were the husband's from h i s f i r s t marriage. A l l but t h i s one couple had at l e a s t one c h i l d l i v i n g i n the same metropolitan area. None of the children, however, l i v e d at home. A l l of the wives l i v e d alone i n t h e i r own homes. Although the wives were a l l r e t i r e d at the time of the study, a l l but one had worked outside of the home i n various occupations. Four had worked i n o f f i c e s , one was a teacher and while none of them had been professional caregivers before t h e i r husbands i l l n e s s , three had had occupations such as therapeutic recreation or o f f i c e work which had brought them into contact with the health care industry. The husbands' occupations included two farmers, an auto mechanic, a maintenance man, an engineer, a man who ran h i s own business, a salesman and a policeman. When asked when t h e i r husbands were diagnosed with Alzheimer's disease the wives were able to give a date when the diagnosis was made; however, the approximate date when the symptoms began was more important to them. The length of time since that date ranged from 2 to 9 years. The date of diagnosis was more recent, usually long a f t e r the symptoms had begun. A l l wives had cared for t h e i r husbands at home from the time of onset of the disease u n t i l h i s placement i n a f a c i l i t y . At the time of the f i r s t interviews, the length of time since t h e i r husbands' admissions ranged from 4 months to 13 months. A l l husbands were l i v i n g i n health care f a c i l i t i e s . Data C o l l e c t i o n and Analysis In phenomenology, the researcher searches for subjective meanings through p a r t i c i p a t i o n i n s o c i a l communication with people who have had the experience being studied (Bruyn, 1970). The methodology of t h i s study was therefore not a l i n e a r process but one which integrated data c o l l e c t i o n and analysis while placing emphasis on allowing the subjects to speak f o r themselves (Bruyn, 1970; Lofland, 1971). In order to gather data i n t h i s manner, the ethnographic approach to interviewing was u t i l i z e d (Anderson, 1981b). Allowing subjects to speak for themselves required that they be considered the researcher's teachers with respect to t h e i r common experience. Spradley (1979) suggested that the word "informant" conveys t h i s special r e l a t i o n s h i p (p.25). Thus the wives who part i c i p a t e d are designated "informants" i n t h e i r accounts of the experience. The mechanism for discovery was unstructured interviewing with an interview guide (Lofland, 1971; Spradley, 1979). P r i o r to the f i r s t interview, open-ended questions were developed (see Appendix E). These were intended to e l i c i t accounts or narratives from the perspective of the i n d i v i d u a l s being interviewed ( F i e l d & Morse, 1985). These questions were used only as a guide since the intent was that the subjects be encouraged to t e l l t h e i r own story, and questions were expected to a r i s e throughout the i n t e r a c t i o n . This expectation was confirmed. In every case one question, often from the demographic data sheet stimulated the t e l l i n g of the i n d i v i d u a l ' s story. As has been described i n the l i t e r a t u r e , the wives seemed to have a d e f i n i t e need to t e l l t h e i r story (Cutler, 1985; Bloomfield, 1986). Thus, answers to questions were given without questions being asked and new questions arose as the researcher responded as openly as possible to accounts of the experience. Interviews with each of eight p a r t i c i p a n t s were conducted i n the p a r t i c i p a n t s ' homes over a period of three months. Interviews were audio-taped and transcribed verbatim. Participants were allowed to describe the experience as i t existed for them i n an unbiased way, ensuring a "naive des c r i p t i o n " (Giorgi, 1975, p. 74) . Throughout the interviews, which lasted from 45 minutes to two hours each, the researcher maintained an openness to the t o t a l i n t e r a c t i o n through a phenomenological attitude requiring openness, readiness and willingness to receive (Spiegelberg, 1970). O i l e r (1982) has referred to t h i s openness as "empathetic and i n t u i t i v e awareness" (p.179) and C o l a i z z i (1973) describes i t as " l i s t e n i n g with the t o t a l i t y of h i s being" (p.58). Upon completion of the interviews informants often shared important information, sometimes when the researcher was saying good-bye at the door. When possible, tape recording was resumed but frequently t h i s information was recorded i n written notes at the time or immediately following the interview i n order to minimize loss of d e t a i l e d and important data. Once the interviews had been transcribed, they and the written notes were analyzed according to the phenomenological method described by Giorgi (1975). F i r s t , the e n t i r e interview was read for sense of the whole. The same description was then read again more slowly to i d e n t i f y t r a n s i t i o n s or units of experience c a l l e d meaning units. Meanings are not simply descriptions of behaviours but are interpretations of behaviour among pa r t i c i p a n t s i n a s o c i a l world (Lofland, 1971). Meaning units that repeated one another were integrated, and the remaining units were c l a r i f i e d or elaborated by r e l a t i n g them to each other and to the whole. These meanings, as they were s t i l l expressed i n the concrete language of the subject were subjected to " r e f l e c t i o n and imaginative v a r i a t i o n " (Giorgi, 1985, p.17). This required that the researcher move back and fort h between the concrete t r a n s c r i p t i o n s of the interviews and her own abstract thought as she searched for meanings, categories and r e l a t i o n s h i p s . As each of the i n i t i a l eight interviews was analyzed new questions arose and the need to confirm or c l a r i f y the meanings and relationships i d e n t i f i e d through r e f l e c t i o n was i d e n t i f i e d . Therefore, a new set of questions was developed fo r each informant and second interviews were arranged. In these interviews, the beginning analysis was validated and c l a r i f i e d and gaps were f i l l e d by asking the subjects i f the analysis described t h e i r experience and by asking further questions as necessary (Lofland 1971; C o l a i z z i , 1973). Again, interviews were taped and transcribed and analyzed as before. The meanings, categories and rela t i o n s h i p s discovered were synthesized and integrated into a consistent de s c r i p t i o n of the experience. The r e s u l t of t h i s process i s a descri p t i o n of the esse n t i a l structure of the. experience of the e l d e r l y wife caregiver who i n s t i t u t i o n a l i z e s her spouse. This e s s e n t i a l structure i s derived from meanings given by the wives through i n t e r a c t i o n with the researcher, and therefore constitutes t h e i r explanatory model of the experience. Ethics and Human Rights Approval from the University of B r i t i s h Columbia's Screening Committee for Research Involving Human Subjects preceded the research. Participants were re c r u i t e d through the Alzheimer's Society and through one long term care f a c i l i t y ; approval was obtained from these agencies as well. Subjects were contacted by the researcher once they had given written permission for her to telephone them regarding the study. Before any interviews took place, subjects were 48 given written information and verbal explanations of what the study was about, what would be expected of them and how c o n f i d e n t i a l i t y would be maintained. They were assured that t h e i r decision to p a r t i c i p a t e or not would i n no way a f f e c t t h e i r husbands' care, and they were informed that they could withdraw from the study or request that any information be withdrawn from the study at any time. No subjects withdrew from the study but one subject did request that s p e c i f i c information be excluded. This was done according to her request. Once subjects had signed consents the interviews began. A l l interviews were coded so that p a r t i c i p a n t s ' i d e n t i t i e s were known only to the researcher, and a l l names were removed from the t r a n s c r i p t s . A l l par t i c i p a n t s expressed i n t e r e s t i n receiving a f i n a l report of the r e s u l t s of the study. Summary In t h i s chapter, the phenomenological method as i t was implemented i n t h i s study has been described. Participants were considered to be the experts because they had l i v e d the experience of i n s t i t u t i o n a l i z i n g t h e i r husbands with Alzheimer's disease. Data were gathered and concurrently analyzed through intensive i n t e r a c t i v e interviews, and analysis was conducted by the researcher through abstraction and r e f l e c t i o n . The r e s u l t of t h i s process i s the col l a b o r a t i v e description of the e s s e n t i a l structure of the experience of the e l d e r l y wife whose husband i s i n s t i t u t i o n a l i z e d with Alzheimer's disease. C h a p t e r 4 THE WIVES' ACCOUNTS The f i n d i n g s p r e s e n t e d i n t h i s c h a p t e r a r e composed o f t h e m e a n i n g s w h i c h were e s s e n t i a l t o t h e e x p e r i e n c e o f t h e i n i t i a l p e r i o d o f i n s t i t u t i o n a l i z a t i o n o f h u s b a n d s w i t h A l z h e i m e r ' s d i s e a s e . W h i l e e a c h w i f e ' s a c c o u n t o f t h e e x p e r i e n c e was u n i q u e , embedded w i t h i n t h e a c c o u n t s were common m e a n i n g s . The r e l a t i o n s h i p b etween and among t h e s e m e a n i n g s c o n s t i t u t e t h e e s s e n t i a l s t r u c t u r e o f t h e e x p e r i e n c e f o r t h e w i v e s . T h r o u g h o u t t h e a c c o u n t s , t h e w i v e s d e s c r i b e d t h e e x p e r i e n c e o f t h e i n i t i a l p e r i o d o f i n s t i t u t i o n a l i z a t i o n o f t h e i r h u s b a n d s a s one o f u n c e r t a i n t y . The theme o f u n c e r t a i n t y was p e r v a s i v e . I t was e x p r e s s e d i n t h e l a n g u a g e o f a l l i n f o r m a n t s . Words s u c h a s " p r o b a b l y " , " m i g h t " , "maybe", "seems", " i f " , a nd "may", and e x p r e s s i o n s s u c h a s "you n e v e r know", " y o u ' r e g u e s s i n g " , " I wonder", " I b e l i e v e " and " w h e t h e r I s h o u l d " and "maybe I c o u l d h a v e " were u s e d by t h e w i v e s t o d e s c r i b e t h e i r e x p e r i e n c e s . As w e l l , p e r s o n a l f e e l i n g s s u c h a s a n g e r , f e a r , a n x i e t y , a m b i v a l e n c e and most commonly g u i l t a c c o m p a n i e d a c c o u n t s o f u n c e r t a i n e x p e r i e n c e s , w h i l e p e a c e o f mind, s a t i s f a c t i o n and o t h e r p o s i t i v e f e e l i n g s a c c o m p a n i e d r e d u c t i o n o f u n c e r t a i n t y e x p e r i e n c e d b y t h e w i v e s . U n c e r t a i n t y a s t h e u n i f y i n g theme p r o v i d e s t h e framework f o r t h e e s s e n t i a l s t r u c t u r e o f t h e w i v e s ' e x p e r i e n c e . W i t h i n t h i s theme t h e w i v e s d e s c r i b e d t h e s o u r c e o f t h e i r 50 u n c e r t a i n t y , expressed what they f e l t u n c e r t a i n about, t o l d o f f a c t o r s which i n f l u e n c e d t h e i r u n c e r t a i n t y and r e l a t e d the ways i n which they managed t h e i r u n c e r t a i n s t a t e . The nature of t h e i r t o t a l experience was "worse than death". A model of t h i s s t r u c t u r e i s p r o v i d e d i n F i g u r e 2. S e p a r a t i o n d e s c r i b e d what happened t o the wives and t o t h e i r husbands a t the time of i n s t i t u t i o n a l i z a t i o n . Furthermore, s e p a r a t i o n had two d i s t i n c t forms: s e p a r a t i o n of husband from home, and s e p a r a t i o n of husband and w i f e . Each of these forms of s e p a r a t i o n was a source of u n c e r t a i n t y f o r the wives and each had a p a r a l l e l s t r u c t u r e c o n s i s t i n g of e x p r e s s i o n s of u n c e r t a i n t y , f a c t o r s i n f l u e n c i n g u n c e r t a i n t y and management i n the u n c e r t a i n s t a t e . The o r g a n i z a t i o n of the p r e s e n t a t i o n of f i n d i n g s r e f l e c t s the wives p r e s e n t a t i o n of t h e i r e x p e r i e n c e . They began t h e i r d e s c r i p t i o n w i t h what happened when husbands were sepa r a t e d from home, proceeded t o d e s c r i b e what happened when husbands were sepa r a t e d from wives and summed up the t o t a l e x p e r i e n c e as "worse than death". T h e r e f o r e , the p r e s e n t a t i o n begins w i t h a s e c t i o n about u n c e r t a i n t y a r i s i n g f i r s t from s e p a r a t i o n of husband from home, proceeds w i t h a s e c t i o n about u n c e r t a i n t y a r i s i n g from s e p a r a t i o n of husband and w i f e and concludes w i t h the d e s c r i p t i o n of the t o t a l e x p e r i e n c e as worse than death. S e p a r a t i o n of Husband From Home Se p a r a t i o n o f husband from home: A source of u n c e r t a i n t y S e p a r a t i o n from home removed husbands from the c a r e of Figure 2. 51 EXPERIENCE OF INSTITUTIONALIZATION OF HUSBAND ilTH ALZHEIMER'S DISEASE IS UNCERTAINTY SOURCE OF UNCERTAINTY IS /SEPARATION-. OF HUSBAND FROM HONE ^ O F HUSBAND AND HIFE FACTORS INFLUENCIH6 UNCERTAINTY ABOUT D0IN6 THE BEST THING Adaission process Quality of care Staff response to nife as caregiver Reaction of other patients Husband's responses EXPRESSIONS OF UNCERTAINTY ABOUT BEING HARRIED NIDON Living as earned Midm TOTAL EXPERIENCE IS HORSE THAN DEATH FACTORS INFLUENCIN6 UNCERTAINTY ABOUT SEINE HARRIED WIDOW: Social responses to role Husband's recognition of • i f e HAMMING IN STATE OF UNCERTAINTY ABOUT DOING THE BEST THING: Ensuring husband's veil-being ttaking hie the coeforts of hoee •vigilance Managing uncoefortable feelings •being thankful •seeking support •finding hueour ..•distancing MANAGING IN STATE OF UNCERTAINTY ABOUT BEING HARRIED NIDON: Maintaining attachment •scheduling visits •being there just in case •reaching husband Adapting to being alone •being strong •seeking support •keeping busy •being thankful t h e i r wives and from t h e i r desired home environment. This s i t u a t i o n was a source of uncertainty for the wives. The wives' recognition of the si g n i f i c a n c e of t h e i r adopted caregiving r o l e made them uncertain about t h e i r husbands' security without t h e i r care. Adjustment to t h e i r husbands' gradual cognitive regression backwards through childhood dominated the wives' accounts of l i f e at home for t h e i r husbands before admission. The following i s one of many descriptions of t h e i r husbands' c h i l d l i k e behaviour: I: I t ' s c h i l d l i k e i n a simple reason, he l e t s you take his hand, and he l e t s you dress him. And l i k e i n the f i r s t place I used to put hi s undershirt the way he was supposed to put i t on, you know, so he wouldn't get i t back to front or something l i k e that, and I ' l l put h i s socks on the bed, l i k e lay h i s clothes out. ... But i t got to the point he had no idea what to do with them. Also evident i n the above description i s the accompanying development of a caregiving r o l e c l o s e l y resembling that of I = informant R = researcher H = husband's name W = wife's name F a c i l i t y A = f i r s t f a c i l i t y to which husband was admitted F a c i l i t y B = second f a c i l i t y to which husband was admitted F a c i l i t y C = t h i r d f a c i l i t y to which husband was admitted mothers of children, which was experienced by a l l of the wives. However, looking a f t e r an adult with the cognitive presence of a c h i l d was much more d i f f i c u l t than looking a f t e r an actual c h i l d as the following informant suggests. The husbands' adult s i z e and physical s k i l l meant that the wives had to be a l e r t at a l l times frequently necessitating 24 hour-a-day care: I: And I said, you're absolutely t i e d i n , j u s t l i k e with a l i t t l e c h i l d , except with a l i t t l e c h i l d you can put a lead on a kid when you walk with them, you know, you see them at expos. You know a l i t t l e k i d i s going to do things so you kind of run a f t e r them. On the other hand when you're looking a f t e r l i t t l e c hildren you're not 75 eithe r . As caregivers, the wives accepted r e s p o n s i b i l i t y not only for the demanding l e v e l of t h e i r husbands' physical care but for protecting them s o c i a l l y as well. In an e f f o r t to s h i e l d t h e i r husbands from the disapproval of others the wives withdrew from s o c i a l contact with those who might not understand the c h i l d l i k e behaviour: I: And uh, i t j u s t gets to the point, you can't have somebody come i n and v i s i t . R: Why i s that? I: Well, he was apt to do a striptease i n there ... Come out of the bathroom without any clothes on. I could handle H. with eating, and my family could. I t ' s d i f f i c u l t f or someone who hasn't been exposed to seeing someone slobber and, and not be able to control the l i q u i d that they're putting i n t h e i r mouth or else pick up the spoon and turn i t the wrong way. And I think you get very protective. You don't want somebody to see t h i s , because you don't want them to, think badly of your husband ... not, not of yourself. You're protecting your husband, j u s t l i k e you would protect your c h i l d . Furthermore, while the wives withdrew from s o c i a l contact with others, others often withdrew from them: I: ... you lose your friends when your husband has Alzheimer's. So many men are very good hearted but, you know i t ' s only human nature, i f they come out f o r the evening they can't t a l k to t h e i r opposite number, i t ' s very d u l l . The consequence of s o c i a l withdrawal was the increasing domination of the caregiving role i n the wives' l i v e s i n a context of s o c i a l i s o l a t i o n . In s p i t e of i t s d i f f i c u l t i e s , the caregiving r o l e was a r e s p o n s i b i l i t y which seemed natural to the wives. In fact, they viewed i t as an extension of the r o l e they had always performed i n making a home for t h e i r husbands: I: I think though a wife i s kind of the homebody and that, and looks a f t e r the husband more than a husband looks a f t e r a wife. Moreover, the changes i n t h e i r husbands happened so gradually at f i r s t that the wives had scarcely been aware of the adaptations i n t h e i r f a m i l i a r r o l e s : 55 I: Yeah, you can't put s p e c i f i c times because these things happen, gradually. The Alzheimer's happened gradually with him regressing and you keep doing things that you ... You don't r e a l i z e that you changed your habits u n t i l a l l of the sudden when you look at i t and you think, my gosh, I have to do a l l t h i s . They described t h e i r acceptance of the caregiving f o r t h e i r c h i l d l i k e husbands as "mothering i n s t i n c t s " taking over. In the end giving up the caregiving r e s p o n s i b i l i t i e s was d i f f i c u l t for them: I: And you have to l e t go, but you don't l e t go e a s i l y . You know, that i s your r e s p o n s i b i l i t y . And as your r e s p o n s i b i l i t y i t ' s hard to l e t go of those r e s p o n s i b i l i t i e s . As I said, the only way I can do i t i s l i k e n i t to when your children leave home that t h i s i s another period of your l i f e and you have to accept i t . You t a l k to yourself a l o t . Giving up t h e i r roles as caregivers was made more d i f f i c u l t by the r e a l i z a t i o n that the one-to-one care and personal attention which they provided for t h e i r husbands would not l i k e l y be possible once husbands were separated from homes. The care the wives provided not only ensured physical and s o c i a l security.but had allowed the husbands to remain i n t h e i r desired home environment. Indeed, both husbands' and wives' views of i n s t i t u t i o n a l i z a t i o n made separation from home seem unacceptable: I: We had one (an i n s t i t u t i o n ) that was r i g h t next to my mother's home where we l i v e d i n P. And my mother always c a l l e d i t the vegetable bin and that was I think was what I had i n my mind. And I have seen abuse i n an i n s t i t u t i o n . You get a l l walks of l i f e working i n t h i s and you know that at times there i s abuse. One husband had expressed h i s views about l i v i n g i n an i n s t i t u t i o n before he became i l l with Alzheimer's disease. Clearly, h i s views had contributed to his wife's reluctance to separate him from his home: I: He voiced h i s opinions that he never ever wanted to be i n a nursing home. He would rather die. He hoped he didn't l i v e long enough to go into a nursing home. So I've known what hi s feelings were. Which doesn't help any. However, there seemed to be more to t h e i r desire to keep t h e i r husbands at home than simply avoiding i n s t i t u t i o n a l care. They believed that t h e i r husbands would be happiest at home and were committed to the caregiving r o l e that would keep him there. The desire to avoid separating t h e i r husbands from the home environment was often given as the reason f o r the wives' determined resistance to i n s t i t u t i o n a l i z a t i o n : I: Well, I don't think I was ready psychologically. I fought i t . But then you ask the health f a c i l i t i e s what they think and they think t h i s i s the way to go and you r e a l i z e you can't, i f things get worse, you can't carry on i n d e f i n i t e l y the way they are. So i t ' s a very hard decision to make. I know some wives f e e l they're putting t h e i r husband out of t h e i r own home and they go through t h i s trauma and they're denying them the comforts of t h e i r own home. And most people as they get on i n l i f e t h e i r home i s t h e i r c a s t l e and i t ' s everything to them. They enjoy i t . ... So you are torn betwixt what's the ri g h t decision to make. The depth of f e e l i n g about being the cause of depriving t h e i r husbands of home and happiness once he was i n s t i t u t i o n a l i z e d i s evident i n the following excerpt: I: ... But he couldn't get out and enjoy those, for that b e a u t i f u l autumn we had l a s t year, months of that, he was caged, you know. Having gone from t h i s sort of environment and walks every day, you know and the trees and the parks and along the beach to that. I t was r e a l l y hard to take. I c r i e d a l o t on the way home. Because, you know, i t j u s t seemed b r u t a l . Just because he was d i f f i c u l t i n the evenings, to have landed him i n there l i k e that, because b a s i c a l l y the family was nervous about my being alone here with him. I ju s t didn't f e e l that was enough cause to have sort of imprisoned him and i t r e a l l y was a prison, that's the way I f e l t about i t , an absolute prison. Realizing how t h e i r husbands f e l t about home, the wives attempted to continue caregiving u n t i l they f e l t sure that t h e i r husbands were no longer aware of being i n an 58 i n s t i t u t i o n . However, none of the wives were able to continue caregiving for that length of time: I: I f e e l , well, he's my husband and t h i s i s our house, and I didn't think he was ready. I r e a l l y didn't think he was ready to go i n . I kept saying "no, he's not ready to go i n . " R: What did you think "ready to go i n " meant, at that time? I: Well, I thought he would be more disoriented, l i k e , you know, l i k e some of them are, they're l i k e l i t t l e l o s t sheep, they don't understand too much. I've thought that he would ... And at times he seemed good, so I didn't think he was ready. Separation of husbands from home resulted not only i n removal of c h i l d l i k e husbands from the physical and s o c i a l security ensured by t h e i r wives' care, but from the desired environment of home. The consequence of t h i s separation for the wives was uncertainty that they were doing the best thing for t h e i r husbands. Expressions of Uncertainty About Doing the Best Thing The wives' uncertainty about doing the best thing for t h e i r husbands centered around two themes: uncertainty about entrusting t h e i r husbands' care to others and uncertainty about t h e i r r o l e i n t h e i r husbands' care i n the i n s t i t u t i o n . Uncertainty about entrusting husband's care to others. The wives continued to f e e l responsible for t h e i r husbands' well-being i n s p i t e of t h e i r admission to an i n s t i t u t i o n . They f e l t that they had delegated rather than relinquished t h e i r r e s p o n s i b i l i t y and t h e i r uncertainty centered around whether or not entrusting h i s care to others was doing the best thing for t h e i r husbands: I: ... I needed the help I think i s what I f e l t and I needed to know that he was being taken care of. Like I needed that assurance that things were working out a l l r i g h t . I t was l i k e somebody t e l l i n g you, "Yes you've done a good job and you did the r i g h t thing by putting him into the h o s p i t a l " . Uncertainty about the care t h e i r husbands were receiving sprang from the wives' awareness of the l i m i t a t i o n s inherent i n i n s t i t u t i o n a l care. The wives feared that necessary care might not be provided because they recognized that the s t a f f were busy: I: Well I'm sure there's never enough s t a f f to give one-on-one attention unless you're i n a private home and you j u s t hope that the nurses looking a f t e r your loved one are caring people. Coupled with the wives' r e a l i z a t i o n that s t a f f were busy was the awareness gained through t h e i r own caregiving experience that caring for someone with Alzheimer's disease i s p a r t i c u l a r l y challenging. The wives f e l t uncertain that the s t a f f of the f a c i l i t i e s had the knowledge and experience with Alzheimer's disease needed to provide adequate care: I: You need an awful l o t of patience with people l i k e that (Alzheimer's patients) and another thing i s that you can't argue with them either. You can't argue with those patients at a l l . They become very upset. You have to agree with everything they say, everything they do. That's where your patience comes i n . You have to be very patient with them. I. ... but when he went to the lodge I thought, 'cause I didn't r e a l i z e they accepted Alzheimer's patients, that was what was getting me for a while, and they said yes they were, and they were going to have to accept more, because i t was getting, you know, more prevalent. And I said, well they're never going to do that, they're never going to do t h i s . As well the wives feared that s t a f f lacked the personal commitment needed to care for an Alzheimer's patient: I: They're more l i k e l y to think of the patient as a r e c a l c i t r a n t c h i l d rather than someone whose brain i s dying. You can't blame them altogether you know. They've got a job, some money coming i n . They may have a c h i l d at home that's concerning them. And they can't get too involved and they just do what they have to do and then they go for t h e i r coffee and then they do another s t i n t and then they go for t h e i r lunch. Uncertainty about care also arose from the wives' d i f f i c u l t y i n evaluating t h e i r husbands' care. In t h e i r c h i l d l i k e state husbands were unable to eith e r t e l l wives about t h e i r care or request care for themselves: I: But I f e e l d i f f e r e n t now, I f e e l they're, yes I l i k e h i s room and he's ... I know they're good to him. I know they do what they can do. R: How do you know that? I: Well I don't r e a l l y know, I think, I f e e l at times, some are very short and curt you know and then again as I say some are, have the patience and extra kindness. Uncertainty about f u l f i l l i n g r o l e i n husband's care. Having entrusted t h e i r caregiving r o l e to others, the wives found that t h e i r new ro l e within the i n s t i t u t i o n s was unclear. They wanted to do what was best for t h e i r husbands but were unsure about how to accomplish that: I: ... I ju s t didn't know what I could have done to help except to ju s t v i s i t him. Oh, they did t e l l me about his clothes, that was i t , clothes that had to be washed and laundered that would wash, not wooly things that would shrink ... a f t e r they'd a l l shrunk. They did t e l l me about that ... so that's about the only thing I did to help. R: And you would have l i k e d to do more? I: Yes I would have l i k e d to do more but, but they didn't seem to want me to do anything. I: I t ' s hard to put into words. I f e l t as i f I was the person going you know, the onlooker, and that I was, you know, that was t h e i r world and you almost f e l t as i f you asked permission to do ... that was another thing, you, 62 you do have to ask permission. You see you ask i f you can take them out, "Is i t a l l r i g h t i f I take him out?". And that's hard a f t e r a l l these years of being married. I t seemed that the wives were looking to the s t a f f for d i r e c t i o n but the necessary dialogue between s t a f f and wives was e i t h e r inadequate or missing. Uncertainty accompanied attempts to carry on i n t h e i r r o l e s as mothers to c h i l d l i k e husbands. They f e l t that they must act as advocates but feared s t a f f r e p r i s a l s might r e s u l t : I: You know, what they're going through, you're s u f f e r i n g too. I t ' s rebounding on you whether you l i k e i t or not. So you do kind of respond I guess maybe, whether i t s good or bad, you get kind of t h i s motherly attit u d e . You fuss around him l i k e an old hen. Maybe nurses think i t ' s too much. I've heard through my work i n the h o s p i t a l , one case of a lady who's always fussing about her mother i n the extended care and the nurses saying well, "She's more problem than the mother". So I wouldn't want that to happen but I guess you do think these people, they can't speak for themselves, you know. You're t h e i r advocate you might say and you've got to kind of be on the look out. A combination of understanding for the s t a f f given the r e a l i t i e s of providing i n s t i t u t i o n a l care and uncertainty about s t a f f reaction to suggestions often caused the wives to take no action on t h e i r husbands' behalf, even when they f e l t 63 that action was needed: R: The fact your husband l o s t h i s glasses and h i s dentures, and that he sometimes doesn't wear h i s own clothes, that doesn't seem to trouble you too much. I: No, i t did at f i r s t but I figured out well you know, these people, the s t a f f has so much to do that they j u s t can't keep track of a l l t h i s . I'm sure that's the reason why, but I don't l i k e to mention anything because, I don't know i f i t would cause a b i t of f r i c t i o n or what. I would j u s t as soon not mention i t . R: F r i c t i o n ? I: Yeah, towards my husband, ... I thought maybe they'd take i t out on him or something and I don't want that to happen. I t probably wouldn't happen but t h i s went through my mind. So I thought I'm j u s t as well not to say anything. Another informant revealed ambivalent feelings when speaking about the difference between her s e l f and her husband had she been the one i n s t i t u t i o n a l i z e d . Fear was experienced i f wives intervened, and g u i l t was experienced i f they did not: I: I don't think he'd have the g u i l t feelings at a l l . R: Why do you think that would be? I: Because he was a much more d i r e c t person, and less a n a l y t i c a l about emotional things and sort of interpersonal things, much less a n a l y t i c a l . ... He always had a d i s t i n c t decision about anything. I can always see both sides of every question. He would say, "Those people are not doing the r i g h t thing and I'm going to complain that she i s n ' t getting for instance uh, enough vitamins i n her d i e t . And I'm going to make that s t i c k , by Goodness". So you see, I mean that's the sort of thing. Whereas I can see the d i f f i c u l t i e s and I don't want to make a hassle, and I f e e l i f you make too much of a hassle and I f e e l i f you make too much of a fuss i t reacts unfavourably on the patient. In summary, i n rel a t i o n s h i p to separation of t h e i r husbands from home, the wives experienced uncertainty about whether or not they were doing the best thing f o r him. They were uncertain about entrusting care to others who were busy and who perhaps lacked the knowledge and commitment necessary to care for Alzheimer's patients. Fear that the roles they performed might have negative repercussions for t h e i r husbands contributed to the wives' uncertainty about doing the best thing. Factors Influencing Uncertainty About Doing the Best Thing Several factors influenced the wives' uncertainty about doing the best thing when they i n s t i t u t i o n a l i z e d t h e i r husbands. These influencing factors included: the admission process, the qu a l i t y of care that the husbands received, s t a f f responses to the wives, r e s u l t s of exposure to other patients and husbands' reactions to i n s t i t u t i o n a l i z a t i o n . The admission process. The admission process made a s i g n i f i c a n t difference to the wives' feelings about whether or not they were doing the best thing for t h e i r husbands. This process included the way i n which the decision to admit was made, the f a c i l i t y chosen for admission, and the response of others to the decision to i n s t i t u t i o n a l i z e . Circumstances surrounding the decision to admit t h e i r husbands were c r i t i c a l l y i n f l u e n t i a l . Only i f the wives f e l t that they had coped with t h e i r husbands 7 care at home for as long as humanly possible did they f e e l some assurance that admission had been the best thing to do: I: And everybody t e l l s you, "Oh well, you should put them i n a home, you know, you can't do t h i s " . You cannot put them i n u n t i l you f e e l that i t ' s time. At le a s t t h i s i s my f e e l i n g . I had to r e a l l y understand that I had to put him i n , or f e e l that I couldn't handle him any longer because to l i v e the rest of my l i f e with g u i l t I couldn't do i t . Often the wives continued to cope for so long that doctors, sometimes nurses and family members, persuaded the wives that admission was absolutely necessary: I: I was beat. When he l e f t i n August, I was completely beat. I was worn out completely And there (at the day-care center) one of the nurses Mrs. W., L.W., she's the one that t o l d me, "He's gotta go i n pretty darn soon". And she's the one who got the b a l l r o l l i n g . I t ' s because of her that we were able to get him i n . 'Cause she talked to the public nurse here, and the public nurse got the attention of the doctor and that's when he came 66 out and t o l d me that there was a l i g h t at the end of the tunnel. ... I did everything I possibly could. I wasn't the one that said, "Take him, here he i s , " and take him and drop him o f f there. I t was the doctor and the long term (care people), they were the ones that did i t for me, and I do appreciate that, and I'm happy that they did i t for me. I never was upset, because they were behind i t . In contrast, wives whose husbands were admitted at a time when they f e l t that they could have continued to manage at home suffered increased uncertainty about doing the best thing: I: I was very distraught by i t (the admission), and I didn't think i t was necessary at a l l . But you know friends are very strange, they only look at i t from your point of view and they a l l said, "Oh well, you should've done i t weeks ago". But I didn't f e e l that at a l l . I mean, I had managed quite well and I was waiting for a calm c a l l to take him i n and i t would have been, i t would have come within the next two months I f e e l sure. And I didn't f e e l , even when he was very angry with me that I was ever i n danger. Wives who experienced pressure from others to admit t h e i r husbands before they f e l t that they could no longer cope resented the advice of those whose point of view about the decision d i f f e r e d so markedly from t h e i r own. When husbands were admitted before the wives were ready, feelings of g u i l t 67 and regret lingered: I: Then I do f e e l g u i l t y about the way he's being confined, about that o r i g i n a l sending him i n there i n that manner. I think I ' l l always regret that. But i t r e a l l y was taken out of my hands as everyone points out. Thus, i f the decision to i n s t i t u t i o n a l i z e was made when wives f e l t that they could no longer cope, they were more confident about doing the best thing for t h e i r husbands. The assistance of others i n making the decision under those circumstances added to that f e e l i n g . In contrast, when the wives f e l t that they could have coped for a longer period of time, not even the insistence of others could help them f e e l sure that i n s t i t u t i o n a l i z a t i o n was the best thing to do. The process of s e l e c t i n g a f a c i l i t y for admission was a second component of the admission process contributing to the wives' uncertainty about doing the best thing. Admissions were governed by t h e i r husbands' placement on a waiting l i s t ; therefore the timing of the admission often d i d not coincide with the decision that admission was required. Sometimes wives f e l t pressured into admitting t h e i r husbands before they were ready; more often the r e s u l t was that t h e i r husbands were admitted on an emergency basis to a f a c i l i t y other than the f a c i l i t y of choice. In ei t h e r case the wives' uncertainty was increased: I: ... he was on a waiting l i s t and that's another thing that health care professionals can't do much about ... and I heard them say, "Well the sooner they're i n an 68 i n s t i t u t i o n r e a l l y the better, but you can't always get them i n when you'd l i k e to get that r i g h t and proper care ... l i k e i n our case, i t was suggested by the long term care nurse. I think i t was her that suggested that I have my husband sent to ( f a c i l i t y A). So that was f u l l of trauma. R: For you that was f u l l of trauma? I: Yes. Just the stigma of the place and not knowing what i t was l i k e down there. And my daughter had worked there and she knew a b i t about i t . This i s the one (daughter) i n England. So she was phoning and the idea seemed repulsive to her at f i r s t . But the daughter here, I think was more concerned that something be done. R: Why did she f e e l that way? I: Well I guess that she knew that she couldn't devote a l o t of time to her dad with two small c h i l d r e n and at one point she thought I was, she worded i t , g r o v e l l i n g . When admission was necessary before the f a c i l i t y of choice was available the r e s u l t was heightened uncertainty about the care. This resulted i n husbands being moved from f a c i l i t y to f a c i l i t y as wives searched for a f a c i l i t y where they could f e e l more ce r t a i n about t h e i r husbands' care. In fact, only the three husbands whose o r i g i n a l admission had been to the f a c i l i t y t h e i r wives had selected remained i n those f a c i l i t i e s . The next informant shared her s a t i s f a c t i o n with the way i n which the f a c i l i t y was selected f o r her husband: I: They're good. Yeah. I thought they would be good. Well, L. (name) t o l d me about t h i s place where he was going. She suggested that t h i s place would be very good i f I could get him there ... And once the doctor decided t h i s i s i t , he's going i n , he put him i n that place. R: So you f e l t ahead of time that i t was probably a good place, to have him there. I: Yeah. I went i n and had a look at i t before he went i n . Went and had a look at i t . Noticed i t was clean a l l the way. That meant something to me. A t h i r d aspect of the admission process a f f e c t i n g the wives uncertainty about doing the best thing for t h e i r husbands was the responses of others toward the decision to i n s t i t u t i o n a l i z e . Some individuals supported the wives i n making t h e i r decision and some pa r t i c i p a t e d i n securing admission; the reactions of others who did not understand the decision increased the wives' uncertainty. Such in d i v i d u a l s often d i d not perceive the husbands as unwell because they were not i n close contact with them. Lack of understanding resulted, leading to lack of support for the wives: I: ...and they (the neighbours) don't t a l k to them r e a l l y , or j u s t say a "good morning", or "good afternoon", or whichever, and they don't r e a l i z e that there i s a problem. She'd (one neighbour) never r e a l i z e d there was any problem at a l l . And that's hard. R: That's hard, because of what you think they're thinking about you? 70 I: That's r i g h t . Umhm. Yeah. Oh, I think she f e l t that I was a heartless so and so, you know. Just wanted to get r i d of him. You know, I r e a l l y do, I think that ... And I think his family f e l t ... They knew the doctor had said a nursing home within a year or two, and yet three and a ha l f years l a t e r they s t i l l f e l t that I had put him into a nursing home long before he needed i t . They never said that, but I sure got the inference. R: How did you get the inference? I: "Oh, i n a nursing home? Oh, so soon? Oh, I didn't r e a l i z e " , you know, that type of thing. From a brother who i s a ... h i s brother ... who i s usually very, very t a c t f u l and when he raises h i s eyebrows, you know, d e f i n i t e l y he thinks that t h i s i s wrong. As well, comments from s t a f f sometimes contributed to the uncertainty the wives f e l t . Fortunately for the next informant a negative comment by one s t a f f member was counteracted immediately by another's p o s i t i v e one: I: Well i t was at the time when my husband was crying a l o t , and I was f e e l i n g very badly one day going out, and she said, "Well wouldn't you cry i f somebody put you i n here?". So I very q u i e t l y said, "Well I would hope that I would know enough that the person loved me, and they're doing the very best they could for me" and u n t i l she had l i v e d with an Alzheimer's victim, she should maybe read a l i t t l e more about i t . But she may have had a bad day at that time too. And I don't think i t was two minutes l a t e r ' t i l the s o c i a l worker came up and said that, you know, that they were pleased with the way that I'd looked a f t e r H. at home. A l l those l i t t l e things are what make, make you f e e l as i f you've done everything. R: You need to, to hear that. I: You need, you need to hear that, you need somebody to t e l l you that i t ' s a l l r i g h t , you've done the r i g h t thing. The e n t i r e admission process including the circumstances i n which the decision was made, the securing of admission to the f a c i l i t y of choice and the reaction of others to the eventual admission influenced the uncertainty f e l t by the wives about doing the best thing for t h e i r husbands. Quality of care. Another factor influencing the wives' uncertainty about whether or not they were doing the best thing f o r t h e i r husbands was the qual i t y of care husbands received. Two components were included i n the wives' evaluation of the qual i t y of care: physical care and personal care. Physical care was assessed along three dimensions: outward appearance, management of Alzheimer's disease, and prevention of premature loss of a b i l i t y . Physical.appearance of both the husbands and the f a c i l i t i e s was the f i r s t dimension of physical care evaluated. Cleanliness played an important part i n judgement of t h i s aspect: I: Well every time I've been there the place has been very clean. Floors are as clean as anything i n the 72 bedrooms, everywhere I go, i t ' s always clean. I usually go there about one-thirty i n the afternoons and a lady i n housekeeping i s always washing the f l o o r s where they eat, and I mentioned something one day and she said, "Oh, I do t h i s a f t e r every meal." So I know that i t ' s kept clean. His clothes are always clean. He always has clean clothes on, his hands are clean. His hair, i s sort of shiny, you know I can t e l l he's had his h a i r washed, and hi s n a i l s are done. His f i n g e r n a i l s are done. He's had hi s h a i r cut, not as often as I'd l i k e but he has h i s ha i r cut. So that makes me f e e l good you know, es p e c i a l l y to know that he has clean clothes, clean hands. That makes me f e e l good. The second dimension of the qual i t y of physical care evaluated by the wives was the a b i l i t y of the s t a f f to manage Alzheimer's patients. The wives had developed a great deal of expertise during t h e i r caregiving experience and used t h e i r knowledge to evaluate care. One approach frequently mentioned as being e f f e c t i v e i n management of d i f f i c u l t behaviour was to "take t h e i r mind o f f i t " . When t h i s and other approaches which the wives recognized as e f f e c t i v e were used the wives f e l t reassured about the qu a l i t y of care. When i n e f f e c t i v e approaches were i d e n t i f i e d the wives were disturbed by the care: I: But anyway when I went up at supper time, sure he eat his soup and he was ju s t eatin' h i s pudding, when the nurse come and she says, "Here's a p i l l " , and she pushed i t i n h i s mouth while I was s t i l l feeding him and he just backed up and Alzheimer's patients, I mean, i t scared him. So of course, he s p i t i t out and I got i t on my finger and I says, "He s p i t i t out". She'd gone across to the other bed. "Well, he's got to have i t " . So she pushed i t back into his mouth and she picked the water up o f f h i s table and she says, "Here". No more or anything else and i t j u s t run a l l down his face. I says, "Well, you are a stupid lady", I says, "You don't do that". "Oh", she says, "I assumed he was eating". I says, "You assumed a l i t t l e too much. He's j u s t eaten today. This i s the f i r s t time for two weeks he's eaten some s o l i d " ... But he wouldn't eat any more. ... I blame her for g e t t i n ' him a l l r a t t l e d , I r e a l l y do. The t h i r d dimension of physical care evaluated by the wives was prevention of premature loss of physical a b i l i t i e s , that i s , losses wives attributed to i n s t i t u t i o n a l i z a t i o n rather than to gradual deterioration r e s u l t i n g from Alzheimer's disease: I: I t ' s an old, old building and some patients were confined i n t h e i r wheelchair and strapped i n and some were, you know, very f a r gone mentally and screaming and a l l t h i s s t u f f . Some that were mobile would do nothing but pace up and down the h a l l , up and down the h a l l so that's where H. joined the pacers. And within a week he had l o s t bladder control. They a l l end up that way and I was devastated. Because medications given to husbands caused physical and mental deterioration, administration of medication contributed to uncertainty about q u a l i t y of care. A l l of the wives shared accounts of detrimental e f f e c t s of medications which had been used to manage t h e i r husbands' d i f f i c u l t behaviour: I: ... but I'm not at a l l sure that the minute these people get into an i n s t i t u t i o n i n order to be handled I'm quite sure they have to be drugged to a greater extent than they would be at home. And then that sets up a whole l o t of things. Incontinence among other things. R: The drugs do? I: Oh, yes I'm sure of i t . And strange behavior too I think. You know, of course an Altzheimer's patient has strange behavior i n any event so i t ' s very hard to separate the difference. A spouse can c e r t a i n l y t e l l the difference but an ordinary person probably can't. I: So anyway, then l a s t night he seemed as though he was ... he appeared to be under sedation a b i t , because I can t e l l by h i s eyes and the way he acted. He wanted to go to sleep, and I phoned my doctor about i t because he could hardly walk one day, and then when I l e f t him that night he had f a l l e n i n hi s room. So I asked my doctor who prescribed that new medication for him, because I f e l t i t was too much. And he said, "I did, before I went away, but i t takes a few days before they adjust to a new 75 medication. 1 1 R: Oh, I see, So he's s t i l l on i t then? I: Well I'm not ... Well I guess, yes. I don't know. One meeting I went to Alzheimer's meeting, they said that night, they never should be on medication to quieten them down, and they shouldn't be on any medication. So I don't understand that. Prevention of premature physical loss was important to the wives because they wanted t h e i r husbands to be as comfortable as possible for as long as possible. Because t h e i r husbands deteriorated mentally much more quickly than they d i d ph y s i c a l l y , the wives dreaded the p o s s i b i l i t y that i n s t i t u t i o n a l i z a t i o n would r e s u l t i n an early and long state of being bedridden, a miserable state to be avoided as long as possible: I: But the way he i s regressed, because, he ju s t , he can no longer stand up str a i g h t and uh, I do know that when he ends up i n bed i t w i l l be a case of i t ' l l be a case of h e ' l l go into the f e t a l p o s i t i o n . ... I t ' s j u s t a case of, you j u s t hope the good Lord w i l l take him before that happens. That's the only f e e l i n g I can have. Physical losses that were due to i n s t i t u t i o n a l i z a t i o n and not to disease made the wives doubt that they had done the best thing i n agreeing to admission: I: So, i n the end I thought, well, i t was a big decision. I sure thought and prayed about i t a l o t and uh, I saw my doctor and hi s recommendation was to take 76 him back (to the i n s t i t u t i o n ) and maybe bring him out for weekends ... sort of have the best of two worlds. Looking back I kind of wished I had kept him home and stuck with i t and maybe i t would have been slowed down, es p e c i a l l y h i s posture because though he was r e s t l e s s , he didn't r e a l l y need that t h i r d medication that bowed hi s head over. Because that snapped r i g h t back as soon as he was taken o f f of i t . So though these i n s t i t u t i o n s have a l l these drugs, i t s quite a t i c k l i s h balance I think. And I guess j u s t time works out which i s the best for each person but I don't think H. had reached ... I don't think he r e a l l y needed that though he was very r e s t l e s s But the e f f e c t s of his head going down ... that was devastating. Stimulating a c t i v i t y , including diversions such as bus t r i p s and physical exercise of any type were considered to be e s s e n t i a l to prevent premature loss of a b i l i t y and thus to maintain comfort. A l l of the wives indicated that i t was p a r t i c u l a r l y important that t h e i r husbands be helped to walk. One informant, when asked why walking was so important to her husband, r e p l i e d : I: Because i t s so important to have some exercise. And i f you're s i t t i n g i n a chair a l l day and you're not moving your arms and you're not moving you legs, i n no time at a l l you j u s t loose that completely. Then the next step very quickly comes and that's to be bedridden and then that could be a very long drawn out a f f a i r with 77 a great deal of discomfort i n my opinion which I mentioned e a r l i e r . Much better as long as they are able to keep a patient active. I t increases t h e i r alertness and a l l kinds of things. I t helps t h e i r digestion of food I'm sure. I t helps i n the elimination process. I t j u s t i s n ' t r i g h t to be constantly i n a chair. Now take someone l i k e Rick Hansen, of course, he i s exercising. It ' s true that he's constantly i n a chair but he i s exercising. But someone who has Alzheimer's doesn't know enough to even f l e x t h e i r wrists or move t h e i r ankles or anything l i k e that. And they j u s t become sort of leaden figures i n a chair. Another informant was very s a t i s f i e d with the new f a c i l i t y to which she had had her husband moved because the s t a f f were encouraging her husband to walk again. This, she reports, was a welcome "change around" from the two previous f a c i l i t i e s where her husband had been confined to a chair: I: And she (one of the s t a f f ) said, "Well, we j u s t decided we were going to do something d i f f e r e n t . So they came i n and he wasn't out of bed and they got him out of bed and sat him up on h i s bed edge and pushed h i s chair i n towards the bed and then put the apple way i n the corner, and said, " Now H., you do l i k e an apple don't you?". And (he) said, "Oh yes, of course, where i s i t ? " And she said, "There i t i s . And you're to get i t . Reach for i t . " And he looked at the g i r l who was standing behind the chair and he said "Would you mind getting my 78 apple?". And the g i r l said, "No, H., you're to reach i t yourself." So he ju s t looked her and he reached over and he f i n a l l y inched over enough to get the apple, turned himself 'round and sat down. And that was the s t a r t of i t . So now they have him walking. I guess they held him. You know, there'd be somebody with him of course. And he's gone 21 feet two times that I know of, and that's, well, i t s j u s t a complete change around. In summary, the wives evaluated the qu a l i t y of physical care through the appearance of both the f a c i l i t y and t h e i r husbands, through indications of s t a f f a b i l i t y to manage Alzheimer's disease and through evidence that care provided for prevention of premature loss of a b i l i t y . Personal care was the second c r i t i c a l component of the evaluation of qu a l i t y of care which influenced the wives' uncertainty about t h e i r husbands' admission. Wives wanted some kind of in d i v i d u a l recognition for t h e i r husbands, such as, c a l l i n g the husbands by name, joking with them or doing some " l i t t l e extra" for them: I: ... they used the book that I got for him and then they put up the picture that I brought. They put i t on the wall. I t was a picture of him and me, our f i f t i e t h wedding anniversary and the cake and one of h i s boats and some of h i s friends. So I was quite pleased when I saw that up, you know, i t sort of i d e n t i f i e s who you are, and then Fathers' Day cards, I brought them, the children had brought, and they stuck them up on the wall too. R: You think i d e n t i f y i n g who he i s , i s r e a l l y something very important. I: Oh, oh I think, yes. I t ' s more that he hasn't l o s t hi s i d e n t i t y . Yes 'cause they could a l l j u s t lose themselves, a l o t of sick people together. Individualized approaches to communication such as the use of humour and teasing as well as personal contact were described by the wives as making them f e e l more sure that the care t h e i r husbands were receiving was good: R: This nurse that you think i s so t e r r i f i c , does he l i g h t up when she t a l k s to him sometimes? I: Yes, yes. "Cause I was there one time and she says, "Oh there's that good looking guy again". I says, "yes," and he looks at her and he smiles, he's got t h i s f l i c k e r of a smile you know, yeah, r i g h t away, you see he NEEDS (emphasizes t h i s word) something l i k e that. I think possibly i f , even though people get t i r e d and don't have to spend much time with a person, but maybe maybe some l i t t l e compliment, some l i t t l e thing would be better than medication. Wives f e l t t h e i r husbands must be treated as persons of worth and d i g n i t y . When t h i s was not the case, they were devastated: I: So the second time I went with my daughter he was s i t t i n g there without h i s teeth, without h i s top teeth with j u s t a few on the side so i t looked as though he had no teeth at a l l . The clothes that I didn't recognize. 80 They consisted of black drawstring pants and lumberjack socks. ... I t was ju s t absolutely traumatic to see him in these dreadful clothes that didn't f i t . The pants were too small, the s h i r t was too large. Someone said well i f they're neat and clean, they may be clean but they're not neat, i f you know what I mean. And I ju s t f e l t that within 24 hours he'd been reduced from someone with a very high i n t e l l e c t much more so than my own, f a r greater range of subjects that he was almost an expert on, to someone who had no property of h i s own, who could've been anyone j u s t sort of dragged i n from the street l i k e a wino and stuck i n a wheelchair. I t , i t r e a l l y i s absolutely d i f f i c u l t to accept that. ... of course h i s i n t e l l e c t u a l q u a l i t y had gone down a great deal but he s t i l l was representative of ... But I mean you could t e l l , that he had had a l o t of i n t e r e s t s and so on, ... you could t e l l that s t i l l with H. And to suddenly see him s i t t i n g there, i n the ho s p i t a l s e t t i n g i t was, i t was dreadful but i t was a ho s p i t a l s e t t i n g and he was i n hos p i t a l clothes which you'd expect, but to see him suddenly s i t t i n g i n the lounge i n these t e r r i b l e clothes without h i s teeth, with people i n every stage of being doddering, you know. That r e a l l y broke my heart because i t had ju s t taken away a l l h i s personality and a l l h i s background and being j u s t wiped away i n a single stroke. When the wives f e l t that the s t a f f cared for t h e i r husbands 81 as i n d i v i d u a l s they were much more l i k e l y to a t t r i b u t e physical losses such as i n j u r i e s during a f a l l and even incontinence to the deterioration of Alzheimer's disease rather than to poor qua l i t y care. The contrast i n f e e l i n g experienced by the wives i s exemplified i n the following account of loss of personal possessions: I: Well one of them (jogging o u t f i t s ) he had on once i n that building, and then the other one I think he had i t about twice and I never saw them again. But that happens at t h i s place too, at the f a c i l i t y C , I was quite surprised. I bought him another one a f t e r that i n there and i t disappeared, and the nurses looked through a l l the cupboards and everything, for me and they said, "I'm a f r a i d we have a problem. There are people that l i f t things, even i f you have the names stuck on them a l l over". They take them away, i s n ' t that funny, to think they would do that. But I don't f e e l so resent f u l at t h i s place, but at that other one I c e r t a i n l y did. R: Why, what do you think the difference i s ? I: I don't know. Because they are so good here, they speak so n i c e l y to the people i n the chairs and some of them, some of them are, you know they r e a l l y are quite helpless. They're r e a l l y quite helpless, but they t r e a t them so n i c e l y and they t a l k to them, you know as i f they were friends, not ju s t something that has to be looked a f t e r . Thus personal care which provided husbands with 82 i n d i v i d u a l recognition and respect counteracted wives' uncertainty that they were doing the best thing for t h e i r husbands even when t h e i r husbands did experience lo s s . I t seemed that as long as the wives f e l t that the s t a f f had the husbands personal in t e r e s t s at heart, they could t r u s t them with t h e i r care. S t a f f response to wife as caregiver. Wives continued to f e e l responsible for t h e i r husbands' well-being a f t e r i n s t i t u t i o n a l i z a t i o n ; however, they f e l t uncertain about how to f u l f i l t h i s r e s p o n s i b i l i t y . S t a f f response to wives' a c t i v i t i e s was therefore i n f l u e n t i a l with regard to wives' uncertainty about how to do the best thing for t h e i r husbands. For the wives, i t was important that s t a f f s ' expectations and goals regarding t h e i r husbands' care were congruent with t h e i r own. Some wives expected to f u l f i l t h e i r r o l e s o l e l y by v i s i t i n g t h e i r husbands and became confused when s t a f f indicated that v i s i t i n g was not enough. On the other hand, when the wives' expectation was not met that s t a f f would appreciate working together as a "team" i n which wives could share t h e i r expertise, the r e s u l t was increased uncertainty. A l l wives expected s t a f f response to indicate that t h e i r husbands' well-being was a shared goal: I: ... but I think you know some things that maybe make l i f e easier for a nurse and i f they're r e a l l y working to make that patient's l i f e more happy or how long they have l e f t , surely they would be on the look out for ways to improve that person's (quality of l i f e ) , I would think i f they were dedicated. That's what threw me when I got t h i s negative attitude down here, ... "Do you think he needs i t (a ' f l u vaccine)?" (sarcastic tone). I j u s t ... was kind of flabbergasted when I ... but I suppose when you've got a l l kinds of patients you wish people didn't make waves or added problems. In contrast, the feelings of the next informant were much less uncertain. She was encouraged by the s t a f f to provide input into her husbands care: I: I've never seen anything I don't want to. I figure well they should do t h i s because, as they said to me, " I f you see anything you don't l i k e or anything that you want us to know, you t e l l us, and we're glad to hear and we'll t r y and remedy i t " . This wife was able to share her uncertainty with the s t a f f and f e l t r e l i e v e d as a r e s u l t : I: I got t a l k i n g to them and kind of expressed my l i t t l e fears about, well would they put h i s socks on r i g h t , or would they do his teeth, or would you know, see to him l i k e t h i s way. And they says, "See we do a l l that", and I know they do now. So I didn't f e e l quite so bad. Feeling welcome i n the f a c i l i t y also made the wives f e e l more secure i n t h e i r r o l e : I: ... I c e r t a i n l y never f e l t that I belonged at those other two ( f a c i l i t y A and B). But at uh, t h i s one, see I'm getting to know the people, the nurses, they're a l l 84 so nice to me, and i t s r e a l l y amazing... , I ' l l be going up i n the elevator, and uh, quite a l o t of them that are (a nationality) or whatever I don't know ... , and they say h e l l o Mrs. H., how are you today. And I ' l l say, "Now how did you know my name?" And t h e y ' l l say, "Well of course, you're H.'s wife." So that s e t t l e s that you see, so you r e a l l y f e e l as i f you're a part of them. Oh, I f e e l very much more at home. I used to f e e l as i f I were intruding i n those other places. R: Intruding i n what way? I: Well, i n t e r f e r i n g i n t h e i r nursing or whatever i t i s t h e i r ... , or t h e i r regulations or t h e i r routine, that I was interrupting t h e i r routine. I always f e l t l i k e that, that they didn't, you know, didn't exactly approve, of what I was doing or what I wasn't doing. Reactions of other patients to husband's behaviour. Reaction of other patients to t h e i r husbands behaviour also influenced wives' uncertainty. While t h e i r husbands were at home, wives often i s o l a t e d them from others who might not understand t h e i r behaviour; once they were admitted, such i s o l a t i o n was no longer possible. This was a source of uncertainty for the wives because they feared that measures taken to ensure that t h e i r husbands' behaviour was not disturbing to others would be detrimental to t h e i r husbands' well-being: I: ... so I went looking for him one day, went i n the dining room and couldn't see him. One of the ladies 85 said, "Who are you looking for?", and I t o l d her and she said, "Oh, he doesn't eat i n here any more". So I knew of course that there was a problem somewhere, so I f i n a l l y found him. And I said to the s t a f f , "Oh, they t e l l me that he's not eating i n the dining room any more". And she said, "No", she said, "we've had to move him. He's drooling so much that the others objected". Now I don't blame them I can see i t . ... So outside the dining room, i n the lounge area, they have maybe a dozen that they have to feed. And there's a l i t t l e table there and him and one other man are there. But my husband gets up and walks around. And they have a table, with the dessert say for a dozen people and she said he walked over there and he was drooling and she said he a c t u a l l y s p i t into the desserts. So they're going to have to put him at mealtime, ... they haven't yet ... once or twice, but they haven't yet permanently, i n one of these chairs, c a l l e d a g e r i - c h a i r that he can't get out of. Now that, you see because he walks so well, that's going to be t e r r i b l e ! And yet, how else when you're eating a meal, how else can you keep someone ... I mean I understand that, I can see that they're going to have to do i t , uh, because I wouldn't want to eat ... The problem was p a r t i c u l a r l y severe i f husbands with unacceptable s o c i a l behaviour were admitted to f a c i l i t i e s which served patients other than those with dementia. One wife expressed her r e l i e f that her husband had been moved to 86 a f a c i l i t y which served only those with brain dysfunctions: I: But i t ' s a d i f f e r e n t s i t u a t i o n down there at the lodge. They've got d i f f e r e n t kinds of patients to look a f t e r besides Alzheimer's. People are, t h e i r memory i s quite good, you know what I mean, at the lodge. And I mean, some of those people, they're old d e f i n i t e l y , and they don't understand the Alzheimer's. So they, the people, they're the ones that make i t rough for the Alzheimer's patients because they don't understand. I f he walks into t h e i r room, "Get out of here. You've no business i n here". Where, down there i t doesn't matter. He can go into somebody else's room 'cause the other fellow, "Well i f he's on that bed, I guess that i s n ' t my bed, I ' l l go on to the next one". You know what I mean. R: So everyone at f a c i l i t y B. has Alzheimer's i s that right? I: No, not quite I don't think. But diseases that's affected the brain that they're not r e a l l y with i t . I t ' s mostly Alzheimer's. Husband's responses to i n s t i t u t i o n a l i z a t i o n . Because the cognitive a b i l i t i e s of the husbands were va r i a b l e at the time of t h e i r admission, the wives were never completely c e r t a i n about how much t h e i r husbands understood or cared about being separated from home. Therefore, another factor influencing the wives' uncertainty was t h e i r husbands' reactions to being i n an i n s t i t u t i o n . Again, t h i s problem was p a r t i c u l a r l y acute at the time of admission when the husbands reactions 87 were most often negative. The husbands often t r i e d to leave the f a c i l i t i e s and sometimes even ver b a l l y complained about being admitted. T y p i c a l l y , the wives f e l t increased uncertainty when admitting t h e i r husbands under these circumstances and f e l t g u i l t y as a r e s u l t : I: When I went i n f i r s t of a l l to look around and I agreed that f a c i l i t y A would be good, I agreed, and they said i t would be about two years perhaps, around there you see, so I thought i t was a long time. I didn't r e a l i z e i t was going to come so soon. But I did f e e l g u i l t y when the time came. I said the room was empty, and he said "Well, now I've seen everything," you know. And I thought, oh, i t j u s t was harder than ever, see. Even when the husbands did not verb a l l y complain about i n s t i t u t i o n a l i z a t i o n , the fact that t h e i r varying mental acuity caused them to have "good days" and "bad days" enhanced wives' uncertainty about doing the best thing: I: Uh, for a long time, i f , i f I went down and i t was a r e a l l y good day, I came back with a r e a l g u i l t t r i p you know, "Well maybe I could take him home for a l i t t l e b i t longer". And then you'd go down maybe three or four days l a t e r and he would, you ra r e l y ever went where he had two good v i s i t s i n a row, which i s a God's blessing. Because you do go on r e a l g u i l t t r i p s . Even yet, i f they're i n good shape and able to converse with you and go out on p i c n i c s . Like I used to take him out, then you have a g u i l t . When you come home, you know, you fi g u r e , you 88 know, oh, maybe I could have coped a l i t t l e b i t longer. In summary, uncertainty about whether or not the wives were doing the best thing for t h e i r husbands i n separating them from t h e i r homes was influenced by several factors. The admission process, the qual i t y of physical and personal care t h e i r husbands received, the indications of congruency of goals and expectations of s t a f f and wives, other p a t i e n t s 7 acceptance or r e j e c t i o n of t h e i r husbands' behaviour and the v a r i a b i l i t y of husbands' responses to i n s t i t u t i o n a l i z a t i o n a l l contributed to the l e v e l of uncertainty experienced by the wives. The approaches used by the wives to manage t h e i r uncertainty w i l l be presented i n t h i s next portion of the study. Managing i n State of Uncertainty About Doing the Best Thing The wives managed t h e i r uncertainty about doing the best thing with two approaches: F i r s t , they c a r r i e d out a c t i v i t i e s to increase t h e i r confidence that t h e i r husbands' well-being was ensured. Second, they adopted strategies to help them manage the uncomfortable feelings which accompanied uncertainty. Ensuring husband's well-being. The wives attempted to ensure t h e i r husbands' well-being by providing husbands with the comfort of home and being v i g i l a n t i n order to i d e n t i f y necessary action. Providing the comforts of home i n the i n s t i t u t i o n involved providing "the l i t t l e extras" that husbands would miss as a r e s u l t of i n s t i t u t i o n a l l i f e . In doing so wives hoped to bring a l i t t l e happiness into 89 husbands' 1 i v e s : R: I am quite interested i n what i t was l i k e for you to be a v i s i t o r e s p e c i a l l y at the beginning? I: In f a c i l i t y A., you were ju s t t r y i n g to make i t an occasion for them, bring a b i t of happiness to them. There was so l i t t l e you could do. Maybe bring some food that they l i k e d or something, your tape to play music or something to make i t easier for them. Taking t h e i r husbands' favourite food was one way i n which a l l of the wives provided the comforts of home: I: But as long as he's mobile and uh, you know, I can take him out occasionally or that we can, they've got bea u t i f u l p i c n i c tables and chairs there, and I usually take down a muffin. He loves bran muffins and I take him down bran muffins and cheese, and we s i t outside and have a glass of pop. Vigilance was another way i n which the wives managed t h e i r uncertainty about t h e i r husbands well-being away from home. Vigilance provided wives with the information they required to supplement i n s t i t u t i o n a l care, protect t h e i r husbands from disapproval of others, and i f necessary, act as advocates f o r them. Thus, v i g i l a n c e was a primary reason for t h e i r v i s i t s : R: What would you say the purpose of your v i s i t s i s then? I: I t ' s r e a l l y hard to say. Just to make sure that everything's going along as good as i t can be. 90 I: I f e l t that i f there was anything I could do, I wanted to be there. The next informant described the calculated way i n which she planned her observations within the f a c i l i t y . Because she consistently observed good care, she f e l t more content: I: I can go away from H. now there and f e e l quite content. R: But you didn't at f i r s t ? I: Oh, no, no. No at f i r s t i t was a case of, as I said I wasn't sure that they were going to look a f t e r him as well as I could. And that I would go down and I'd see that h i s ha i r was combed, and I never went down on the same day. I t r i e d them out. ... I never went down on the same day or the same time. But, he was always clean, his ha i r was combed, he was always dressed so, I knew that he was being taken care of. Although the wives said that they would always continue to watch to a ce r t a i n extent, the i n t e n s i t y of t h e i r v i g i l a n c e decreased when they f e l t that they could r e l y on the f a c i l i t y to provide good care. Conversely, t h e i r v i g i l a n c e i n t e n s i f i e d as t h e i r uncertainty about care increased. Some of the wives, p a r t i c u l a r l y those not s a t i s f i e d with t h e i r husbands' physical and personal care, f e l t that the very fact that they watched helped ensure better care for t h e i r husbands: I: And also I think my very presence and I'm sure a l l 9 1 the other people that go, there's a nucleus of us that go, f e e l that our presence there maintains a c e r t a i n f e e l i n g among the s t a f f that we are there and that we do see what's going on. Because, you know, the aides are mostly not very much trained. One that I was quite fond of she only had f i v e months t r a i n i n g and didn't r e a l l y understand Alzheimer's. And there are casual workers you know, so I think that they need to know that the patient's r e l a t i v e s are observing. Vigilance provided the wives with an i n d i c a t i o n of supplementation required i n t h e i r husbands' care. When the wives discovered needs which were not being met they attempted to meet those needs themselves: I: ... because you know he has a very strong c o n s t i t u t i o n and I could foresee that i t might go on ... i t might not, but i t could go on for years. And i f he's i n a bad state as fa r as h i s skin breaking and a l l that, i t could be much worse for him. So I make sure that he gets, tomatoes, avocados and that sort of thing with h i s lunch which I think i s c e r t a i n l y adequate but often lacking i n those things. Fresh f r u i t i s almost never seen. I t s almost always canned. That's because of budgetary r e s t r a i n t s . Vigilance also alerted wives when t h e i r husbands' behaviour was becoming i r r i t a t i n g to others. When t h i s happened, i f possible, the wives took action designed to reduce the i r r i t a t i o n . They recognized that s o c i a l l y 92 unacceptable behaviour might r e s u l t i n further losses due to increased use of drugs or confinement: I: And (I have) got to get him d i f f e r e n t shoes to wear i n the h a l l because you can hear him walking - people complain below - and a l l these things I get (feel) them inside, then I worry some more ... and then I got the shoes, but you see they're always asking f o r something, and t h i s i s upsetting because I can never f e e l that ... I want to know i f that's okay, I don't want people to complain about him. But I can't do much more. I: Well i t was a very nice, clean place, and uh, they were very good about cleaning and everything l i k e that. Cause H. used to s p i t . I don't know where he got that idea from, he used to s p i t so much, and uh, oh, I'd have to clean the window, I'd clean the windows myself, cause his bed was r i g h t beside the windows. And there were four of them i n the room. Vigilance was p a r t i c u l a r l y important to the wives' r o l e as advocates for t h e i r husbands since the husbands were not able to t e l l t h e i r wives about the care they received. In t h i s respect the husbands were l i k e young childre n i n h o s p i t a l . Advocacy most often involved requesting a modification to t h e i r husbands' care or treatment: I: I did look into the drugs and he was getting a tremendous amount i n the morning and he was asleep. This was l a s t winter. Every time I went he was f a s t asleep. And I asked them i f i t was necessary and they cut i t i n ha l f . What i f I hadn't asked? What stage would he be at now? Managing uncomfortable feelings. The wives engaged i n behaviour which helped them to deal with feelings such as anger, doubt, regret, ambivalence and g u i l t generated by t h e i r uncertain s i t u a t i o n . Being thankful, seeking support of others, seeing humour i n an otherwise upsetting s i t u a t i o n and distancing themselves from the s i t u a t i o n were a l l approaches used to manage uncomfortable f e e l i n g s . In t h e i r attempts to f e e l better about t h e i r s i t u a t i o n the wives c i t e d many d i f f e r e n t reasons to be thankful. Having t h e i r husbands i n a f a c i l i t y close to home and the long and productive l i v e s t h e i r husbands had l i v e d were j u s t two of these reasons: I: I mean I could be a l o t worse o f f and have him someplace way across the r i v e r or somewhere l i k e that. I think i t would have been a t e r r i b l e thing, taken more out of me i f I couldn't have gone l i k e I had gone, you, know what I mean. I: Well I mean the point i s he i s , he has reached an age at which many, many people are s t i l l a l i v e but many people have eithe r gone or have had strokes or (are) i n some way incapacitated and i t ' s very sad and dreadful but you have to remember that there are a l o t of very young people who are facing sort of futureless existence. The above informant also indicated that f e e l i n g that others were worse o f f made her thankful since the s i t u a t i o n could have been worse than i t was. The wives often compared t h e i r husbands with others i n the f a c i l i t i e s i n order to come to that conclusion: I: And uh, there's some of them are very tormented down there. One lady i n p a r t i c u l a r , she's j u s t uh, bad memories and she's just goin' around, so upset a l l the time. I t ' s sad to see her. I f e e l sad for her and glad i n a way that H. i s n ' t quite l i k e that. Maybe h e ' l l get l i k e that, I don't know, but uh, most times he's ju s t more or les s quiet. To manage t h e i r feelings wives also sought support from others who understood what they were going through. Family members who understood Alzheimer's disease often provided t h i s much needed support. As well, Alzheimer support groups provided an opportunity for the wives to share t h e i r feelings with those who understood: I: (At the Alzheimer's meetings) I think i t ' s j u s t that you can t a l k to somebody else, and l i s t e n to somebody else without t a l k i n g to a bunch of strangers who always think you're running your spouse down. Because that's ... I think that's what people sort of think: oh, you know, your husband can't do t h i s , and he can't do that. I get the impression that .... you know ... whereas when you go to Alzheimer's everybody else has the same problem, and you can ta l k . Sometimes i t ' s nothing ... there's nothing r e a l l y said of any si g n i f i c a n c e , but s t i l l you know that there are other people i n the same boat. Knowing that others experienced s i m i l a r feelings helped the wives understand and accept t h e i r own: I: Like I go to the Alzheimer's society when they have a meeting down here, but i t ' s o f f for the summer. And you t a l k about d i f f e r e n t things and I think that that's h e l p f u l . R: In what way i s that helpful? I: Well seeing that other people have (the same problem) .... One of the ladies said, "Do you ever get over the f e e l i n g about f e e l i n g g u i l t y about putting your spouse i n a nursing home?". You know you should do i t . You know i t ' s the only thing to do. You know i t ' s r i g h t . You know you can't do anything else. You can't carry on forever. The wives also used humour to manage t h e i r feelings about having t h e i r husbands i n an i n s t i t u t i o n . Sometimes they found something to laugh at i n the behaviour of other residents of the f a c i l i t i e s . Sometimes humour was therapeutic i n an otherwise serious s i t u a t i o n : I: Well, sometimes I'd better laugh than cry. My husband did something, I can't remember what happened now and my daughter was kind of laughing. Not when he was there, mind you. My daughter and I were laughing. He didn't see me i n the kitchen and I was kind of laughing, too, and my son-in-law said "You shouldn't laugh at your dad." Well, she wasn't r e a l l y ... she wasn't r e a l l y laughing at him, but sometimes a laugh i s not a bad way to break tension ... you know. Because she's very, very sympathetic. She wasn't laughing at him at a l l , but there are ce r t a i n things that, you know, sometimes i t ' s better to laugh. F i n a l l y , some wives managed uncomfortable feelings by distancing themselves somewhat from the s i t u a t i o n . This approach was used as a way of minimizing the detrimental e f f e c t s of v i s i t i n g on t h e i r health: I: ... Now for instance, one woman goes to v i s i t her husband every day. And she says she finds i t comforting and I think i f she does that's f i n e but I don't think the s t a f f maybe ... I don't go more than once a week unless I have a p a r t i c u l a r reason for i t . I come home very, very depressed. So i t ' s not good for me. None of the wives chose to avoid v i s i t i n g altogether; even those who had chosen to r e s t r i c t v i s i t i n g continued to v i s i t at l e a s t once a week. In summary, separation of husbands from t h e i r homes and the concomitant necessity to entrust t h e i r care to others i n a le s s than desirable environment resulted i n the wives experiencing uncertainty about doing the best thing for t h e i r husbands. Uncertainty was influenced by the admission process, the qu a l i t y of care, s t a f f responses to performance of t h e i r roles, reactions of other patients to t h e i r husbands' behaviour and t h e i r husbands' responses i n the i n s t i t u t i o n . The wives managed t h e i r uncertainty by taking the comforts of home to t h e i r husbands and by being v i g i l a n t . They managed uncomfortable feelings by being thankful, seeking support from others who understood and, less frequently, by distancing from the i n s t i t u t i o n . Separation of Husband And Wife When the wives described what happened to themselves and t h e i r husbands, i n addition to separation of husbands from home they described separation of husbands and wives. This form of separation resulted i n an experience of uncertainty with an equivalent structure to that of separating husbands from home. This section of the chapter includes a description of the uncertainty r e s u l t i n g from separation of husbands and wives, expressions of the wives' uncertainty, factors influencing t h e i r uncertainty and t h e i r management of uncertainty. Separation of husband and wife: A source of uncertainty. Separation of husband and wife had two components: disruption of marriage t i e s and loss of companionship. Together, these components of separation of husband and wife were a second source of uncertainty for the wives. Upon admission, the marriage t i e s which the wives had struggled to maintain by caring for t h e i r husbands at home were broken. The poignancy was clear, not only i n the words but also i n the tears which almost always accompanied them: I: Because I think, l i k e when H. went into the lodge i t 98 was a t e r r i b l e , t e r r i b l e day. I t was the f i r s t time we've separated ... i t didn't h i t me ' t i l a f t e r I walked out with my son, "I'm leaving H.". A change i n the rela t i o n s h i p between husbands and wives had accompanied the cognitive regression of husbands into childhood and the resultant adaptation of the wives to roles as mothers; however, the emotional t i e s of marriage were no less strong: I: You develop a d i f f e r e n t love for your husband, the same love you have for a c h i l d . You know i t ' s not a passionate love of your f i r s t married days. I t ' s more of a motherly i n s t i n c t you've developed over the years and i t ' s part of you. A l l of those l i v e s , a l l those years you've had with that husband you j u s t can't wash i t down the drain, can you? Sustaining marriage t i e s had been one of the reasons for the wives to struggle to keep t h e i r husbands at home for as long as possible: I: I t ' s love, honour and cherish, and he'd looked a f t e r me a l o t of times when I was sick. And I think i t was ju s t a case of reciprocating, ... for as long as I could. You know, we had a very good marriage, and i t was j u s t one of those things. I t was part of what was happening to him ... No matter what the degree of cognitive impairment, husbands p h y s i c a l l y continued to be representatives of the husbands they used to be, and as such were valued by t h e i r wives: 9 9 I: ( I thought) I can handle i t i f i t j u s t goes along for a l i t t l e ways I can handle i t for a b i t longer. Because H. had had a very keen mind. He was a r e a l t o r . He'd been president of the Lion's club and Masonic and did, went out and did a l l sorts of work with them, t h e i r d r i l l s and that and then to see him develop the way he i s now i s was pretty rough on everyone. Marriage t i e s remained strong even when the marriage had been strained as i s i l l u s t r a t e d i n the following excerpt from the account of one wife whose husband had become v i o l e n t : I: Oh, people wondered how I even stayed with him so long, even years back. But you don't get married and leave and of course they didn't know the h a l f of i t but what they saw they wondered why I would take i t . I n s t i t u t i o n a l i z a t i o n resulted i n the wives' struggle to maintain marriage t i e s even though p h y s i c a l l y separated from t h e i r husbands. The wives had experienced p a r t i a l loss of t h e i r husbands' companionship p r i o r to i n s t i t u t i o n a l i z a t i o n as a r e s u l t of Alzheimer's disease, however t h e i r physical presence had remained important; physical separation l e f t them f e e l i n g completely alone. I: That's the loss I f e l t , I was so alone Yeah, I missed him, you know i t uh, he l e f t a void, there was a big void, you know he wasn't there any more. They spoke of the loss of t h e i r husbands not only for the present but for the future; t h i s f e e l i n g of loss occurred i n both "good" and "bad" marriages. 100 Wives found i t necessary to l i v e alone even though t h e i r husbands remained a l i v e . They were "married widows" (Brandwein and associates, 1979), a state which was a source of uncertainty about how they should l i v e t h e i r l i v e s . Expressions of Uncertainty About Being a Married Widow Uncertainty about l i v i n g as a married widow. Wives with husbands who were a l i v e but separated mentally by the disease and p h y s i c a l l y by i n s t i t u t i o n a l i z a t i o n l i v e d i n the state of being neither wife nor widow yet both wife and widow. In t h i s ambiguous state the wives experienced uncertainty about how they should l i v e t h e i r l i v e s . I: You know you wondered where you were going and what i t was a l l about. So I ju s t f e l t i s o l a t e d as i t were even though the children were r e a l l y good. But when you're used to having someone with you j u s t can't get used to i t you know ... not the same way. I: ... then when he went i n , i t was almost, I shut myself o f f . That you know, now I was going to be free and to do the things I want to do. You're unhappy and you don't want to do near the things you thought you did. Li v i n g alone, the wives experienced d i f f i c u l t i e s s i m i l a r to widowhood: I: I t was d i f f i c u l t doing things (now) that you're by yourself and everyone else i s , i s with someone. And 47 years of marriage i s a long time. 101 I: I f i n d i t hard being alone. You're l i k e a f i f t h wheel, you know. You're l i k e a f i f t h wheel when you go out with anybody. Even though l i f e alone made them f e e l l i k e widows, a f t e r many years of being married, the feelings of s t i l l being married dominated t h e i r l i v e s . The strength of the attachment they s t i l l f e l t f o r t h e i r husbands created ambivalence about enjoying l i f e alone while making adjustment to t h e i r s i t u a t i o n d i f f i c u l t i f not impossible: I: I would think that i f he'd had a quick heart attack and gone, by now, a year l a t e r , I would have adjusted. Because, you know I'm a reasonably balanced sort of person and you have to r e a l i z e that that's l i f e , you know. But you can't r e a l l y adjust to t h i s sort of semi-state as well, as e a s i l y . You can't make any new beginnings. In the above account the informant compares her d i f f i c u l t y i n adjusting to her husband's i n s t i t u t i o n a l i z a t i o n with her expected adjustment had he died. One informant, currently i n a second marriage, had experienced the death of her f i r s t husband. She confirmed the notion that while adjustment to a husband's death wasn't easy, her present s i t u a t i o n was more d i f f i c u l t as i t l e f t her not knowing what to do: I: I know, a f t e r time, and then you make your way when my husband ( f i r s t husband) died before, well, i t was very hard, because he died beside me, and we had a wonderful l i f e . But i n time you see time heals and then I'd know more what to do, how to go about things, and I wouldn't have t h i s constant, constant f e e l i n g that I should go and see H. today, and I wonder how he i s today and ... Uncertainty about l i v i n g as married widows was compounded by uncertainty about t h e i r importance as wives to t h e i r husbands. This uncertainty was r e f l e c t e d i n the ambivalence expressed by the wives about the importance of v i s i t i n g t h e i r husbands: I: ... because who knows what these people are thinking. They can't verbalize i t . So they may know that you're there and they may very well miss you i f you're not and wonder why you haven't come i n . Since they don't remember that you were i n at lunch, by dinner time then they think, "I haven't seen her for a long time and I wonder why". So, you know, "Has everybody deserted me?". That would be quite normal to think that i f you couldn't remember. Sometimes I don't know i f he r e a l l y wants you there or not. My son went up the other day and talked to him for a while and another couple - a lady that was v i s i t i n g -they got up and walked away and my husband got up and walked with them - with my son s i t t i n g there, forgetting he was there. So I don't r e a l l y know how much good we do. But maybe i t makes me f e e l better to know that I'm not neglecting him, and yet when I come home I'm always 1 0 3 depressed. The next informant suggests that she was unsure about whether or not i t was important to her husband that she v i s i t e d every day, but she f e l t that she might miss him i f she didn't. I: I s t i l l been going to see my husband every day. I know, l i k e some people say i t i s n ' t important. Maybe i t i s n ' t important to him either as fa r as that goes. I think I would be the one maybe more, probably to miss him. Thus, feelings of uncertainty about how to l i v e as married widows pervaded a s i t u a t i o n i n which the wives f e l t strongly attached to t h e i r husbands and yet were separated from them p h y s i c a l l y and mentally. Ambivalence about enjoying l i f e , d i f f i c u l t y adjusting to the s i t u a t i o n and uncertainty about the importance of v i s i t i n g were expressions of the wives' uncertainty about l i v i n g as married widows. Factors Influencing Uncertainty About Being a Married Widow Two factors influenced the wives' uncertainty about being married widows: s o c i a l responses to t h e i r r o l e and t h e i r husbands' responses to them as wives. So c i a l response to ro l e . No recognition e x i s t s for the s o c i a l status of "married widow"; consequently, s o c i a l guidelines for these women were ambiguous. Ambiguity was enhanced by the confused reactions of others and by c o n f l i c t i n g s o c i a l expectations. Friends, family and others often were unsure about whether to re l a t e to the women as 104 wives or as widows. Soc i a l confusion i s evident i n one informant's description of a neighbour's remark: I: Unfortunately, Dad i s here but he's not here. The next door neighbour said to me, "You know you should j o i n the widows club. Oh, but you're not a widow". But you're alone. I t ' s the same thing but you're not a widow. And she said, "I didn't mean that". You know, but a c t u a l l y to a l l intents and purposes you are. The d i f f i c u l t y experienced i n explaining married widowhood to others i s i l l u s t r a t e d i n the following comment: I: ... i t ' s very d i f f i c u l t to explain t h i s to somebody that, that t h i s person r e a l l y has died, your husband i s gone, you're now looking a f t e r t h i s l i t t l e old man who you care for, you give a hug or a k i s s when you go i n , and then you walk away and you are leaving them. The wives found themselves i n a s i t u a t i o n i n which the loss of t h e i r husbands was not s o c i a l l y recognized or supported and yet they were expected to behave as i f t h e i r husbands were gone. The wives f e l t l i k e widows i n many ways but lacked the s o c i a l support that a widow would have received following the death of a husband: I: Well when they're dead, they're dead, they're gone. There's nothing you can do for them. A l l t h e i r friends, you know sympathy cards ... , people f e e l sorry for you and everything. They get you over a t i g h t spot. In a nursing home si t u a t i o n , a l o t of people think, "Oh, she j u s t didn't want to be bothered". And you get no 105 sympathy. You've got no background, nothing to f a l l back on. Whereas, I'm not saying I wish they were dead, I don't mean that. But I mean i n comparison. I have a s i s t e r that died of cancer, a brother that died of cancer ... When they had died, at l e a s t that's a point. The family r a l l y 'round. Everybody knows, you know, that there's problems. The requirement that the wives obtain power of attorney i n order to maintain control over t h e i r f i n a n c i a l a f f a i r s resulted i n s o c i a l confusion f o r some wives. Fortunately, most of the wives had been advised early enough or had encountered professionals w i l l i n g to sign the necessary papers despite t h e i r husbands' mental incompetence. When power of attorney could not be obtained, being caught between wife and widow was a source of anger, f r u s t r a t i o n , regret and g u i l t : I: I didn't have power of attorney. Our w i l l i s so that i f H. died everything i s mine but without having power of attorney, I have j u s t had to go through a committeeship and I am so angry. I think i t ' s something that the s t a f f should, and hospitals should r e a l i z e too, that t h i s happens to a wife f a r more than i t w i l l happen to a husband, because a husband's pension comes into t h e i r name, so they always have money. But the courts w i l l step i n . They wouldn't have only that I wanted to s e l l the house and the house i s i n j o i n t tenancy. So I had to get committeeship which has cost me $1300. The 106 government said that a l l they would allow me was $500 a month out of mortgage money the re s t has to be accounted for. You can't l i v e on $500 d o l l a r s a month. I had taken money and put i t i n my own name out of our j o i n t account so I was a l l r i g h t But i f I hadn't done that, i f I hadn't had somebody saying to me, which they did, look a f t e r yourself you can always put i t back i n the j o i n t account. But i t makes you f e e l l i k e a crook, that you're st e a l i n g , money. An apparent contradiction existed, however, i n that wives were often expected to behave as i f t h e i r husbands were act u a l l y gone: I: Well, because i t was so far away and because my doctor f r i e n d said to me, "You shouldn't go every day, you know". He said most cases, these cases don't l a s t more than a year or two and he won't know whether you're there or not since he's ... , so don't go often, but I did go about every other day. For those informants whose marriage t i e s were very strong, the c o n f l i c t between what they f e l t they must do and what others expected was a source of d i s t r e s s : I: So i t ' s always good to be there. But I have friends who have given me a very hard time about t h i s and i n fact the doctor who f i r s t sent my husband to f a c i l i t y A., said to me, "Twice a week i s quite enough". And I don't know on what basis he said that. ... And you know, admittedly that was a t e r r i b l y long way to go and I didn't go every 107 day. But I don't f e e l that twice a week i s quite enough for someone you know, who's been very important i n your l i f e and so on. You can't j u s t do that. I t ' s funny i s n ' t i t that people would expect you to. I don't understand that point of view. Doctors and nurses often offered advice about how often the wives should v i s i t . The advise sometimes r e l i e v e d wives of having to decide for themselves, and was often followed, e s p e c i a l l y i n i t i a l l y while the husbands were ex h i b i t i n g d i f f i c u l t y adjusting and while the wives were recovering from the exhaustion of caregiving. However, not a l l of the informants f e l t comfortable i n following the advice of others. One woman could not comprehend that i n d i v i d u a l s who had not experienced a husbands' i n s t i t u t i o n a l i z a t i o n f or Alzheimer's disease should have f e l t competent to give advice: I: I know I couldn't have him home. But i t ' s hard. I don't care what anyone says. Some people say "Oh, you should go out. Go out and do things and have a good time," and I wish sometimes people wouldn't t a l k to me l i k e that, because they don't understand. They don't understand how I f e e l , 'cause they haven't gone through r e a l l y anything i n t h e i r l i f e , as yet. Such advice prompted the wives to avoid these friends; therefore they suffered increased i s o l a t i o n and lack of support. Assuming the husbands were gone also resulted i n the 108 tendency f o r others to stop v i s i t i n g . Wives were convinced by even the smallest response that t h e i r v i s i t s were needed, and expressed sorrow that others were unable to see the purpose i n v i s i t i n g someone who did not remember the v i s i t : I: I wish some of his friends would go. One man i n (place name), he'd known for many many years, went to see him one time, a long time ago when he was i n the swing bed at (a f a c i l i t y ) . And he said, not much sense i n me going, he doesn't remember that I was there anyway. But I said, " I f people would understand i t ' s while you were there that's counting, not a f t e r you leave". I t ' s while you're there. With the recognition, they could t a l k about things i n the past and that's great. But they seem to, "I'm ju s t there, he won't remember I was there, so why go?" you see. But I hope that people w i l l go and v i s i t , 'cause i t ' s while you're there. And that's to everyone that has someone, well even a f r i e n d . I would say, "Please v i s i t " , because they l i g h t up when they see you. Even i f you're there for 15 minutes, you made that person f e e l great. A l l wives experienced withdrawal by at l e a s t some family or friends; some continued to receive much needed support. When withdrawal occurred, wives f e l t even more s o c i a l l y i s o l a t e d than when they were s t i l l caring for t h e i r husbands at home. Wives then f e l t more alone that i f they had been widowed. 109 Husband's recognition of wife. The wives' uncertainty about t h e i r l i f e s i t u a t i o n was d i r e c t l y influenced by t h e i r husbands' recognition of them as wives. Because t h e i r husbands' l e v e l of cognitive a b i l i t y was d i f f i c u l t to evaluate, any responses which indicated recognition made the wives f e e l that t h e i r husbands were responding personally to them and strengthened t h e i r attachment: I: I'm a f a m i l i a r face now and he, I always know when he doesn't know who I am now because he says, "Oh, i t ' s nice to see you. I didn't expect you today and you know r i g h t then, (he's thinking) "I don't know who you are today". R: His greeting i s d i f f e r e n t when he remembers you? I: Yeah, yeah, I uh he's always c a l l e d me W. (nickname) and uh and h e ' l l say "Hi W.". Most wives experienced a stage at the time of admission when t h e i r husbands did not want them to leave. This was an uncomfortable form of recognition which made separation from t h e i r husbands more d i f f i c u l t : I: ... when I leave i t ' s so, such a hard thing because he, he doesn't want me to go, (he asks) why can't I stay longer, why can't I stay and t h i s upsets me and i t upsets him. The degree of recognition, when the wives came to v i s i t , although by no means consistent, was sometimes su r p r i s i n g . U n p r e d i c t a b i l i t y of recognition enhanced the continued attachment to t h e i r husbands, but made adjustment to l i v i n g 1 1 0 alone more d i f f i c u l t : I: On the phone sometimes he says "I wish you'd come and see me. I'm lonely," you know. And I say "I can't come tonight, H., but tomorrow." - "Well, i t ' s no good tomorrow,11 but tomorrow he's forgotten. But then when he says that at night I think I should've gone. I: Although yesterday when I went down. He says, "Don't you get fed up with comin' down here?". I've been goin' every day and I thought well, "You must know", and I says "No, I come to see you". He pulled me to him and kissed me yesterday. He hadn't done that for a long time. ... i t meant a l o t to me yesterday. I thought, "Well I didn't come for nothing". So, he didn't mention my name, but he hugged me but r i g h t away, he kind of forgot again, he j u s t sat and I held h i s hand and he dozed. None of the wives were able to continue caregiving at home u n t i l husbands no longer recognized them, although several wives had planned to do so. Wives sadly explained that i t would be easier to adjust to separation from t h e i r husbands i f husbands did not recognize them any more. As long as t h e i r husbands recognized them, wives remained firmly attached and found i t d i f f i c u l t to e s t a b l i s h l i v e s of t h e i r own. I: Oh, well of course I'm always pleased (when he recognizes me) but I know so much about the disease because I've read a l l about i t , you know and I know i t ' s I l l only a matter of time. But at lea s t i t makes i t worthwhile going, I do f e e l t h e r e ' l l come a time when he doesn't know me and i t ' s probably better then when I probably won't go twice a day l i k e t h i s , because i t r e a l l y uses up your l i f e . In summary, inconsistent s o c i a l response to the r o l e of married widows and husbands' varying and unpredictable responses to wives, e s p e c i a l l y i n terms of recognition were factors which increased wives uncertainty about t h e i r l i f e s i t u a t i o n . The way i n which wives managed t h e i r l i v e s as married widows r e f l e c t e d the struggle to cope with t h i s uncertainty. Managing i n State of Uncertainty About Being a Married Widow Unlike managing uncertainty about doing the best thing, the wives were unable to d i r e c t l y reduce t h e i r uncertainty about being married widows. Instead, they managed by doing whatever made them " f e e l better". Feelings about being married were managed by maintaining attachment and feelings of being widowed were managed through adaptations to l i v i n g alone. Maintaining attachment. Managing uncertainty about maintaining married attachment required the wives to manage uncertain feelings about how much they should v i s i t t h e i r husbands. I t also required that they manage uncertain feelings about t h e i r husbands' responses to them as wives. A l l of the wives maintained attachment with t h e i r husbands by being with them i n the i n s t i t u t i o n s ; however, 1 1 2 much of the wives' uncertainty was centered on the frequency of v i s i t i n g . A l l wives established v i s i t i n g schedules varying from twice a day to once a week, that helped them to sustain t h e i r marriage t i e s and made them f e e l comfortable i n t h e i r r o l e as wives: I: (My son) thinks I go down too often. I have to go twice a week because that's what I'm comfortable doing. And I have come to a conclusion now, what I f e e l comfortable doing i s what I ' l l do. Being with t h e i r husbands was e s p e c i a l l y important on spe c i a l celebration days such as birthdays, Christmas and anniversaries: I: ... but I guess I ju s t had to be with him because i t was our anniversary. ... I t was just , I can't r e a l l y say, i t was a rough day. I t ' s very d i f f i c u l t to t e l l you what you f e e l inside. As I said, I ju s t had to be there, you know, so, and that's f o r me rather than f o r H. Maybe next year i t w i l l be d i f f e r e n t but t h i s year, I had to be there. For most wives, maintaining attachment made going away any distance d i f f i c u l t , i f not impossible: I: I know a l l my grandchildren are going to be home i n Saskatchewan for Christmas. Like my son's here and h i s wife and two kids. And I've been there every Christmas for years. They haven't been a l l together, l i k e l a s t Christmas one of them from Ontario wasn't there but she said, "I'm going to be home Grandma for Christmas so we're a l l going to be home". I said, "Well don't count on me because", I says, " I f Dad's here I'm not coming". I said I couldn't leave him there and me be away there. The wives anticipated decreasing t h e i r v i s i t s when t h e i r husbands no longer recognized them. They described t h i s time as a time when they expected to f e e l freer. However, they f e l t that maintaining attachment would be e s s e n t i a l for t h e i r peace of mind as long as t h e i r husbands l i v e d . Wives also had to deal with uncertainty about t h e i r husbands' responses to them as wives. They dealt with t h i s by being there, j u s t i n case they were missed: I: He has t r i e d to say, "Why am I here?". But he couldn't quite get that out. Something sounded l i k e i t . And I said "You haven't been very well and you aren't walking well and I can't manage i t dear. I can't manage to get you i n and out of the car and up the s t a i r s at home. So u n t i l you're able to do that you've got to be here". But I said, "It's very nice and cheery and bright, i s n ' t i t ? And I come twice a day so you needn't worry. I c e r t a i n l y haven't forgotten about you". They also managed these feelings of uncertainty by reaching the husbands "wherever they were". Husbands who had regressed toward childhood were most often l i v i n g i n the past. Wives who had shared that past were able to reach t h e i r husbands there. One informant offered advice about t h i s to the husband of another Alzheimer's victim: I: When he goes down he says, "Well she's not with i t " . 114 Look I said, "Well you j u s t have to take her as she i s l i k e I take H.". I says, " I f he t a l k s to me, and t e l l s me something, even though there's no bearing, I j u s t have to accept i t and answer him i n that respect." I said, "Maybe a l i t t l e while a f t e r " , I said, "we'll get somewhere else. I t doesn't matter". A l l wives shared examples of what reaching him "wherever he was" meant. Some wives gave examples of responding to t h e i r husbands as i f they were t h e i r mothers or s i s t e r s and some talked of going back with t h e i r husbands into t h e i r childhood. One wife returned with her husband to an e a r l i e r time i n t h e i r marriage: I: I can t e l l him things, you know, happy times and things l i k e that. Once i n a while we used to r e l a t e back a l i t t l e b i t and he'd, you know, remember these things. But now he's t a l k i n g . He's j u s t going back himself and i f you don't get a d r i f t of what he's t a l k i n g about you've no idea of what he's saying. He t a l k s a l o t of the farm i n a way. And when he's moving the furniture, I don't think he's a c t u a l l y moving the furniture, I think he's ... he t o l d me something about he had to get the horses into the place. And he says he's got to make room for the c a t t l e i t ' s getting cold ... which we d i d i n the winter time. We kept the c a t t l e i n and I said, "Well that's f i n e " . I says, "I think somebody else i s doin' that for you now, you may as well relax". (He said) "Do you think so?". I says, "Oh, I'm sure, I'm sure i t ' s a l l 1 1 5 s e e n t o " . (So he s a i d ) "Oh, O.K.". The w i v e s managed u n c e r t a i n t y a b o u t t h e i r m a r r i e d l i v e s b y m a i n t a i n i n g a t t a c h m e n t t o t h e i r i n s t i t u t i o n a l i z e d h u s b a n d s p r i m a r i l y t h r o u g h d e c i d i n g on a v i s i t i n g s c h e d u l e w h i c h made t h e m f e e l c o m f o r t a b l e a n d a l l o w e d t h e m t o be t h e r e j u s t i n c a s e t h e i r h u s b a n d s n e e d e d them. R e a c h i n g t h e i r h u s b a n d s w h e r e v e r t h e y w e r e h e l p e d t h e w i v e s t o d e a l w i t h u n c e r t a i n t y a b o u t t h e i r h u s b a n d s r e s p o n s e s t o t h e m a s w i v e s . A t t h e same t i m e t h e y managed u n c e r t a i n t y a b o u t t h e w i d o w e d p o r t i o n o f t h e i r l i v e s b y a d a p t i n g t o b e i n g a l o n e . A d a p t i n g t o b e i n g a l o n e . W i v e s managed f e e l i n g s o f u n c e r t a i n t y a b o u t t h e i r r o l e a s m a r r i e d p e r s o n s l i v i n g a l o n e i n f o u r w a y s : b e i n g s t r o n g , s e e k i n g s u p p o r t , k e e p i n g b u s y a n d b e i n g t h a n k f u l . W i v e s w e r e n o t p r o v i d e d w i t h , a n d d i d n o t f e e l e n t i t l e d t o s o c i a l s u p p o r t f o r g r i e v i n g b e h a v i o u r . C o n s e q u e n t l y , one way i n w h i c h t h e y managed was b y b e i n g s t r o n g : R: Y o u s a i d t h a t e a r l i e r y o u d i d y o u r c r y i n g i n t h e c a r a n d t h a t y o u w o u l d n ' t l e t y o u r s e l f mope. I: W e l l , I t h i n k i t ' s v e r y b a d , t o g e t i n t o a s t a g e o f m o p i n g . I know H. w o u l d n ' t w a n t me t o . A n d i t c e r t a i n l y d o e s n ' t h e l p y o u t o m a i n t a i n y o u r h e a l t h . A l s o y o u t e n d more t o , I s u p p o s e , w a n t t o t a k e t h i n g s t o make y o u f e e l b e t t e r w h i c h I w o u l d n ' t w a n t t o do. I w o u l d n ' t w a n t t o h a v e a n y t h i n g t o l e a n o n , y o u know, s o i t ' s v e r y i m p o r t a n t , a n d a l s o I h a v e my r e p u t a t i o n t o k e e p up my f r i e n d s s a y I'm a v e r y t o u g h b i r d . So I ' v e g o t t o maintain that reputation. And the children would be so hurt i f they saw me t e r r i b l y upset and there's a l o t of, a l o t of in t e r e s t i n g things i n l i f e . You know H. wouldn't want me to do that. They struggled to be strong, by concealing t h e i r emotions. They reported "crying alone" or "doing t h e i r crying i n the car", often i s o l a t i n g themselves from others i n the process: I: ... but no, I'm adjusting. I mean, we maybe now ju s t come a l i t t l e you know. But I can t a l k about i t . ... For a while there I didn't r e a l l y want to go out and meet people, I didn't want to t a l k about i t . Not because I didn't want to t a l k about i t , I just wasn't able to t a l k about i t . I didn't want them to ask me, because I knew they were a l l interested, and I knew they were a l l , they weren't asking out of c u r i o s i t y , ... ju s t the idea I couldn't cope. I couldn't handle i t without breaking down, and I f e l t , very inadequate to do, you know, I couldn't do i t , you know I couldn't harden myself. The wives shared t h e i r feelings that s o c i a l l y they must "get going", or that they "should" or that they "planned to", but most had been unable to act u a l l y succeed: I: However, I f e e l a l i t t l e more content about i t a l l 'cause I know I can't, I'd love to look a f t e r him but I know I can't. So I have to r e a l i z e that but he's i n good hands and I have to s t a r t looking a f t e r myself and thinking that l i f e ' s going to be good a f t e r a l l . I ' l l have to make i t ... i t ' s only myself that can do i t , no 117 one else can do i t for me, I have to work at i t . Frequently, the only steps taken towards reestablishing s o c i a l connections consisted of seeking support from those who had experienced s i m i l a r feelings. Alzheimer's groups, widowed friends or widows' groups often f u l f i l l e d t h i s need. Wives managed the uncertainty of l i f e alone by keeping busy. However, t h i s management strategy did not usually begin upon admission. Most wives went through a period when they were eithe r too t i r e d to do anything or when they did not f e e l l i k e doing anything. The period of doing nothing lasted for varying lengths of time: I: ( L i f e a f t e r admission) was very vast, you know. There was something missing. I t was lonely. Yes. But I was t i r e d . I j u s t went (MAKES COLLAPSING SOUND) you know. And i t was l i k e that for months. I t took me s i x months to get over i t . I kept t e l l i n g the doctor, "I'm t i r e d . I'm so t i r e d . Isn't there something that can be done?". "Well," he says, "after what you've been through," he says, " i t takes time to get over i t . " I t took me at l e a s t s i x months to get over i t . Completely, anyway — R: What would a day be l i k e for you during that s i x months? I: Nothing. I didn't do anything. Not a thing. I couldn't do anything. I j u s t washed the dishes and made my meals and made my bed, and that was i t . I couldn't do a thing. 118 Once the wives recovered from the period of exhaustion, they began to cope by keeping busy. Keeping busy helped them avoid the ambivalent feelings of being at home while being drawn towards being with t h e i r husbands: R: How would you describe a day, a t y p i c a l day for you a f t e r he was admitted? I: Well I didn't go out of the house very much. I was busy and kept working around here. I didn't j u s t s i t down and cry and cry and cry. I ju s t kept myself busy. I thought well I ' l l have to do t h i s and do that and that. And I l i k e to do these things. I even did some painting i n the kitchen. I did everything I could think of you know. When the wives spoke about t h e i r a c t i v i t i e s they spoke i n a tone of resignation. They seemed to f i n d l i t t l e joy i n l i v i n g alone: I: Well, uh there was ju s t me, myself, and the house. But now I've kind of adjusted to that and people are good and phone and I do t r y and go ... well I go to church a l l the time and I go to the ladies meetings and I belong to two other groups and I go there once a month. So that i t breaks the time and I'm not just reading the paper. Finding ways of being thankful was another way of managing feelings about l i v i n g alone: I: But I know we had a good l i f e and I think, most of the time that's what's taking me on. I figure, well, we've had a l o t of good years, we've had nothing to look 119 back on and think well, "What'd we do that for, what'd we do t h i s for?" In summary, separation of husbands and wives disrupted marriage t i e s and resulted i n loss of companionship. When combined with the fact that t h e i r husbands remained a l i v e t h i s placed the wives i n the uncertain s i t u a t i o n of being married widows. Varying responses of husbands toward them as wives and confused and c o n f l i c t i n g s o c i a l responses to t h e i r r o l e contributed to t h i s uncertainty. Wives managed t h e i r uncertain s i t u a t i o n as wives by maintaining attachment to t h e i r husbands through v i s i t i n g and reaching him "wherever he was". They managed t h e i r uncertain s i t u a t i o n as widows by being strong, seeking support from those who understood, keeping busy and being thankful. Total Experience i s Worse than Death "Worse than death" was the way i n which wives described the t o t a l experience of i n s t i t u t i o n a l i z i n g of t h e i r husbands with Alzheimer's disease. The phrase summed the wives' feelings about a l l parts of the experience: the disease i t s e l f , separation of husband from home, separation of husband and wife and the encompassing theme of uncertainty. A l l the feelings of sadness, regret, anxiety, doubt, fear, g u i l t , anger and f r u s t r a t i o n generated by t h e i r uncertain state were contained within t h i s phrase. Having a husband with Alzheimer's disease was "worse than death": I: I t ' s you know, there's things i n l i f e worse than 120 death. And i t ' s hard, i t ' s hard to watch. That they don't know i t , i t ' s a kind disease as f a r as the person goes. They don't know but i t ' s very hard on the family, to watch them become t h i s vegetable, and there's no other way to put i t . It's just t h i s , with H. now, he i s n ' t a vegetable, but i t ' s a case of t h i s l i t t l e old man that, that you know, i s incontinent. He can't feed himself properly. He can't dress himself any longer, you know, so i t ' s , i t ' s pretty rough. L i f e for t h e i r husbands i n the i n s t i t u t i o n was "worse than death". Watching t h e i r husbands die, l i t t l e by l i t t l e , having no idea how long he would continue to l i v e was extremely d i f f i c u l t . I: I'd much rather have a quick heart attack and i t ' s over you know, I ju s t don't want to see him dying by inches kind of thing. But funnily enough the things you worry most about are more easy to handle than you think. R: Are you thinking then of the end possibly? I: Well, from time to time but I think i t ' s a long way of f . Because he had l o s t a l o t of weight at the f i r s t f a c i l i t y he weighed about a hundred pounds, but he's back up now to almost a hundred and t h i r t y , and, you know, looks reasonably well. And uh, unless he got pneumonia or something I think we've got a long haul. I t ' s hard to say. ... I t depends what sort of condition he's i n for the longest part. I hate to see anyone, I see enough of them there, I see enough of them bedridden to know i t ' s 121 not pleasant you know, but I s'pose i t ' s worse for the person looking. And t r u l y i t i s n ' t pleasant now because he has the i n d i g n i t i e s of incontinence and the i n d i g n i t i e s of not getting h i s teeth brushed. The separation of husbands and wives was described as "worse than death": I: You know and he, i t ' s j u s t l i k e i t ' s worse than death 'cause he's gone and he s t i l l i s n ' t gone. He's s t i l l there but I can't communicate with him. I can't share nothing with him any more. The uncertainty of the s i t u a t i o n and i t ' s e f f e c t on t h e i r l i v e s were described as worse than death: I: ... e s p e c i a l l y i t s a very protracted kind of i l l n e s s , i t i s pretty hard. You don't know whether to take a holiday for instance, or get away from i t a l l , or whether you should. And you see him kind of die inch by inch which i s not ... I suppose you're kind of looking for new symptoms a l l the time too, and thinking, well, l a s t year he could do t h i s and that's denied him now and i t s always a step down i s n ' t i t ? When the researcher asked the following informant about t h i s state of "worse than death" she t o l d of her f e e l i n g of being caught between wife and widow: I: I wouldn't want to prolong H. xs l i f e because he's not getting very much out of i t . In fact almost nothing I would say. And yet he i s n ' t dead, you know what I mean. So you can't sort of turn over a new l e a f . I don't even 122 l i k e to get r i d of a l l his clothes and things. You know. I t ' s awkward. I've s t i l l got them ... a l o t of them I've given away that were old. But some of h i s best things, I ju s t can't bring myself to sort of act as though he no longer existed which would be much easier to do i f he weren't a l i v e . Of course I haven't experienced the other (having a husband die) so i t s a l i t t l e d i f f i c u l t to say. One wife who had experienced the death of her f i r s t husband described her feelings about her husband's l i f e and her l i f e as worse than death: I: A c t u a l l y I l o s t my f i r s t husband to death and I think t h i s i s fa r worse. R: In what way? I: Well, t h i s seems ... The other, the g r i e f was very deep but, you know, you gradually ... you don't forget your loved one or the nice times or the l i f e you had together but t h i s i s a kind of a l i v i n g death. He's not there and yet he i s there. Can you understand what I'm t r y i n g to say there? Because when they're once gone i t ' s hard but t h i s i s very very hard, which I didn't r e a l i z e how many people I spoke to that had loved ones that have Alzheimer's, what they were going through. You have to have i t yourself before you can r e a l l y f e e l what that person's going through. That's day and night i t never seems to be away from you at a l l . I t seems to be with you a l l the time ... And of course you can't help the 123 g u i l t f e e l i n g . I think. When he was i n that other ward I couldn't stand the time, the times he wasn't too bad and he came and he ju s t held on and he started to cry and he said, "Surely I have earned something better than t h i s " . That was hard to take. Summary The e s s e n t i a l structure of the experience of i n s t i t u t i o n a l i z a t i o n of a husband with Alzheimer's disease as i t was discovered within the accounts of wives has been presented i n t h i s chapter. Uncertainty was the unifying theme which provided the framework for the e s s e n t i a l structure and therefore for the presentation of findings as well. Upon i n s t i t u t i o n a l i z a t i o n , the wives experienced two forms of separation: separation of husbands from home and separation of husbands and wives. Each form of separation was a source of uncertainty, and each source of uncertainty had i t s own structure including expressions of uncertainty, factors which influenced uncertainty and management i n the state of uncertainty. The wives summarized t h e i r t o t a l experience as "worse than death". Separation of husband from home was a source of uncertainty because husbands were taken from t h e i r desired environment and removed from the comfort and security ensured by t h e i r wives' care. The r e s u l t was uncertainty f o r the wives about whether or not they were doing the best thing for t h e i r husbands. Expressions of t h i s uncertainty centered 124 around doubts about s t a f f providing adequate care f o r t h e i r husbands. In addition, the wives were uncertain about t h e i r expected r o l e and about what ro l e would both meet t h e i r husbands' needs and be accepted by the s t a f f . Several factors enhanced or reduced uncertainty about doing the best thing. These included the circumstances of t h e i r husbands' admission and the f a c i l i t y to which he was admitted; the qu a l i t y of physical care and the degree of respect shown for the husbands' personal worth and dignity; the response of s t a f f to wives a c t i v i t i e s i n the f a c i l i t y ; and the husbands' responses to i n s t i t u t i o n a l i z a t i o n . Wives managed uncertainty d i r e c t l y through actions and i n d i r e c t l y through coping with t h e i r uncomfortable fe e l i n g s . Wives managed uncertainty about t h e i r husbands' comfort and well-being by taking them the comforts of home and through v i g i l a n c e which provided information needed for supplementing care and for guiding a c t i v i t i e s as advocates. They managed t h e i r feelings by being thankful, seeking support from others who understood Alzheimer's disease, using humour and sometimes by distancing themselves from the s i t u a t i o n . Separation of husbands and wives was a second source of uncertainty. This form of separation placed wives i n the s o c i a l l y unrecognized r o l e of married widow and caused them to express uncertainty about t h e i r l i f e s i t u a t i o n . S o c i a l responses to t h e i r r o l e i n the form of confused reactions and c o n f l i c t i n g expectations contributed to t h e i r uncertainty as did t h e i r husbands' unpredictable responses to them as wives. 125 Separation of husbands and wives divided the l i v e s of the wives into two components: one i n which they maintained t h e i r marriage t i e s and one i n which they adapted to l i v i n g alone l i k e widows. Wives managed feelings of uncertainty about the married component of t h e i r l i v e s by maintaining attachment to t h e i r husbands through v i s i t i n g and through reaching them "wherever they were". The widowed portion of t h e i r l i v e s was managed by adapting to l i f e alone. Being strong, seeking support from those who understood, keeping busy and being thankful were a l l ways i n which wives managed l i f e alone. F i n a l l y , wives described the t o t a l experience as worse than death. "Worse than death" was a summary phrase used to convey feelings about separation of husbands from home, about separation of husbands and wives, about l i v i n g with Alzheimer's disease and about the whole encompassing uncertain state. Death, though not welcomed, was seen as a source of ce r t a i n t y i n t h e i r l i v e s . The findings describe the wives' explanatory model of the experience of i n s t i t u t i o n a l i z i n g husbands with Alzheimer's disease. Understanding the wives' experience i s valuable to both professionals and non-professionals with whom wife caregivers come i n contact. Such understanding can p o t e n t i a l l y guide negotiation of e f f e c t i v e and appropriate support f o r wives during the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n of t h e i r husbands. 126 Chapter 5 DISCUSSION OF FINDINGS Kleinman's explanatory model framework provided d i r e c t i o n for conceptualization of the problem of t h i s study. The perspective derived from Kleinman's framework explains the problem as one i n which professional understanding of the caregivers' perception of t h e i r experience fosters negotiation of appropriate care, while lack of understanding often r e s u l t s i n inappropriate care and c o n f l i c t . In t h i s chapter, the findings of the study, which constitute the caregivers explanatory model of the experience, w i l l be presented i n r e l a t i o n to the professional perspective found i n the l i t e r a t u r e . This discussion w i l l demonstrate ways i n which the study of the caregivers' perspective contributes to current knowledge about the experience of i n s t i t u t i o n a l i z i n g a husband with Alzheimer's disease. Caregiving l i t e r a t u r e reviewed i n Chapter 2 as well as other l i t e r a t u r e relevant to the findings w i l l be included. The presentation of the discussion w i l l follow the structure of the findings. I t w i l l begin with uncertainty as the unifying theme of the caregivers' experience. Following that, findings within each section of the uncertainty framework, including separation as a source of uncertainty, expressions of uncertainty, factors influencing uncertainty and the description of the t o t a l experience as worse than death w i l l be discussed. 127 Uncertainty as the Unifying Theme Although uncertainty i s often mentioned i n the caregiving l i t e r a t u r e i n association with the caregiving experience (Kapust, 1982; Shuttlesworth et a l . , 1982), i t would appear that t h i s concept has not been i d e n t i f i e d as a s i g n i f i c a n t part of the experience. Perhaps t h i s i s because l i t t l e research was found regarding the caregiving experience from the caregivers' perspective and even less was found concerning t h e i r experience following i n s t i t u t i o n a l i z a t i o n . One suggestion of the importance of uncertainty i n connection with i n s t i t u t i o n a l i z a t i o n was found i n an unpublished d e s c r i p t i v e study of the spouses' experience following i n s t i t u t i o n a l i z a t i o n i n which the authors report that "feelings of doubt and uncertainty as to r o l e i d e n t i t y create anguish" (Brandwein et a l . , 1979, p.2). S i m i l a r l y , the wives i n t h i s study provide accounts of anguish as a r e s u l t of uncertainty with regard to both t h e i r r o l e i d e n t i t y i n the i n s t i t u t i o n s and t h e i r status as married widows. However, these findings indicate that uncertainty i s not only experienced i n terms of r o l e i d e n t i t y but as the unifying theme of the experience as a whole. Uncertainty i s most often considered to be a perceptual state (Christman, McConnell, P f e i f f e r , Webster, Schmidt & Ries 1988; Hilton , 1988; Lazarus and Folkman, 1984; Michel 1984) . As a perceptual state uncertainty has been examined i n various ways: as a property of a l i f e event (Suls & Mullen, 1981) as a s i t u a t i o n factor influencing appraisal of 128 a l i f e event (Lazarus & Folkman, 1984) and as a source of stress (Michel, 1988). Regardless of the way i n which i t has been viewed, uncertainty has been consistently linked with stress i n that i t contributes to perception of an event as s t r e s s f u l (Lazarus & Folkman, 1984; Michel, 1984; Suls & Mullen, 1981). According to Lazarus & Folkman (1984), uncertainty forces consideration of f i r s t one possible outcome and then another, and when a decision cannot be made "fear, excessive worrying and rumination and eventually anxiety can r e s u l t " (p. 92). The s t r e s s f u l nature of the s i t u a t i o n for caregivers following i n s t i t u t i o n a l i z a t i o n i s recognized i n the l i t e r a t u r e (Hall & K i r s c h l i n g , 1986; Mace & Rabins, 1981; Z a r i t et a l . , 1985); however, research, which has focused almost exclusively on the caregiving experience, thus f a r has only suggested that the caregiving burden may not be rel i e v e d by i n s t i t u t i o n a l i z a t i o n and that there may be a continuing need for care (Chenoweth & Spencer, 1986; Colerick & George, 1986; Z a r i t et a l . , 1986). The finding of t h i s study i s that the burden does indeed continue for caregivers a f t e r i n s t i t u t i o n a l i z a t i o n and that the burden i s uncertainty with i t s associated stress. The need for continuing care for the caregiver, therefore, i s also confirmed. Separation as a Source of Uncertainty Two forms of separation were found to be sources of uncertainty i n t h i s study: separation of husband from home and separation of husband and wife. Separation removes 129 husbands from the security of wives' care and from t h e i r desired home environment. Separation also disrupts marriage t i e s and r e s u l t s i n loss of companionship for the wives. Uncertainty i n separation arises from attitudes to i n s t i t u t i o n a l care and from the meaning of the caregiving r o l e both of which have been documented as reasons for resistance to i n s t i t u t i o n a l i z a t i o n . Wives report that negative expectations regarding i n s t i t u t i o n a l care contribute to uncertainty once t h e i r husbands are admitted. Some of t h i s uncertainty a r i s e s from a negative stereotype s i m i l a r to that reported i n the l i t e r a t u r e (Brock & O'Sullivan, 1985; Lieberman, 1969; Shuttlesworth et a l . , 1982). However, much of i t a r i s e s from the wives' personal experience that care of an Alzheimer's patient i s demanding and from the r e a l i z a t i o n that the in d i v i d u a l i z e d care and the s o c i a l protection which they provided for t h e i r husbands at home i s not possible i n the i n s t i t u t i o n . Davis (1980) reported that caregivers continued to keep t h e i r patient at home because they considered the disabled i n d i v i d u a l a person who had cer t a i n r i g h t s . The s p e c i f i c r i g h t s which the wives i n t h i s study f e e l are v i o l a t e d by i n s t i t u t i o n a l i z a t i o n are t h e i r husbands' r i g h t to in d i v i d u a l i z e d care provided by t h e i r wives, and t h e i r husbands' r i g h t to l i v e i n the comfort of t h e i r own homes. The findings indicate that separation prevents wives from f u l f i l l i n g commitments to keep t h e i r husbands at home. The 130 greater the strength of the commitment, the more vulnerable the i n d i v i d u a l i s to stress (Lazarus & Folkman, 1984). Maintenance of the caregiving r o l e as a means to preserve marriage t i e s and to ensure companionship has also been recorded (Davis, 1980; Gilhooly, 1986; Hirschfeld, 1983). The findings of t h i s study confirm that disruption of marriage t i e s and loss of companionship are outcomes of i n s t i t u t i o n a l i z a t i o n . However, while i t has been suggested that the better the q u a l i t y of the r e l a t i o n s h i p the lower the preference f o r i n s t i t u t i o n a l i z a t i o n p r i o r to admission (Gilhooly, 1986) , the q u a l i t y of the marriage does not appear to a f f e c t the degree of uncertainty experienced by wives following i n s t i t u t i o n a l i z a t i o n . The findings of t h i s study indicate that disruption of marriage t i e s and loss of companionship r e s u l t i n uncertainty for wives of both "good" and "bad" marriages. Marris (1974) contends that because human beings depend on p r e d i c t a b i l i t y and f a m i l i a r i t y i n t h e i r environment, s o c i a l change, such as that which occurs when any r e l a t i o n s h i p i s disrupted, r e s u l t s i n uncertainty and arouses a c o n f l i c t i n g "conservative impulse" (p.5). Thus the findings of t h i s study contribute awareness that the negative feelings towards i n s t i t u t i o n a l i z a t i o n and the reluctance to r e l i n q u i s h the caregiving r o l e because of i t s meaning are sources of uncertainty following admission. The suggestion i s that sources of resistance p r i o r to i n s t i t u t i o n a l i z a t i o n become sources of uncertainty afterwards that the wives are doing the best thing for themselves and t h e i r husbands. The fact that separation r e s u l t s i n both disruption i n commitments and s i g n i f i c a n t s o c i a l change provides additional evidence of the continuing burden experienced by caregivers following i n s t i t u t i o n a l i z a t i o n and thus provides further i n d i c a t i o n of the continuing need for care for caregivers. Expressions of Uncertainty Wives experience uncertainty about doing the best thing fo r t h e i r husbands and about t h e i r s i t u a t i o n as married widows. Examination of the l i t e r a t u r e on uncertainty i d e n t i f i e s and explains the l i n k between c h a r a c t e r i s t i c s of the caregivers 7 s i t u a t i o n and these expressions of uncertainty. C h a r a c t e r i s t i c s of situations about which i n d i v i d u a l s report that they f e e l uncertain include vagueness, lack of c l a r i t y , u n p r e d i c t a b i l i t y , inconsistency, p r o b a b i l i t y , multiple meanings and lack of information (Michel, 1981) . Lazarus and Folkman (1984) d i f f e r e n t i a t e three types of uncertainty: event uncertainty, the l i k e l i h o o d of an event occurring; temporal uncertainty, not knowing when an event w i l l occur; and ambiguity, lack of s i t u a t i o n a l c l a r i t y . In t e s t i n g a t o o l developed to measure uncertainty i n i l l n e s s , Michel (1984) found that these c h a r a c t e r i s t i c s collapsed into two: ambiguity and u n p r e d i c t a b i l i t y . Ambiguity and u n p r e d i c t a b i l i t y are c h a r a c t e r i s t i c s of s i t u a t i o n s about which wives i n t h i s study express uncertainty. The wives report that f e e l i n g uncertain about 132 doing the best thing i s related to uncertainty about entrusting husbands' care to others. I n a b i l i t y to predict the kind of care husbands w i l l receive and ambiguity involved i n evaluating care because of husbands' lack of awareness contribute to t h e i r uncertainty. Their expressions of uncertainty also center around the ambiguous nature of t h e i r r o l e i n t h e i r husbands' care i n the i n s t i t u t i o n and around the ambiguous nature of l i v e s i n which they f e e l l i k e widows but continue to be wives. One i n t e r e s t i n g f i n d i n g i s that communication with s t a f f which could conceivably reduce the u n p r e d i c t a b i l i t y and ambiguity of t h e i r s i t u a t i o n i s often lacking i n s p i t e of recognition i n the l i t e r a t u r e that families should be involved i n t h e i r members' care (Annett, 1986; Goldstein, 1983; Locker, 1981). Uncertainty About Doing the Best Thing The findings of t h i s study indicate that uncertainty about doing the best thing for husbands i s c l o s e l y related to the wives' perception that t h e i r husbands are vulnerable as a r e s u l t of i n a b i l i t y to assume r e s p o n s i b i l i t y for t h e i r own well-being. In fact, wives compare t h e i r s i t u a t i o n both during caregiving and following i n s t i t u t i o n a l i z a t i o n to that of mothers caring for children. From t h i s perspective the l i t e r a t u r e that describes parents' experiences when they have young children i n hospital illuminates the wives' s i t u a t i o n . A central feature of t h i s l i t e r a t u r e concerns the "dilemma of t r u s t " (Kirkpatrick, Futterman & Hoffman, 1974, p.169). The dilemma of t r u s t relates to the parents' 133 recognition that they must r e l y on the knowledge and s k i l l s of health care professionals while at the same time recognizing t h e i r l i m i t a t i o n s . Robinson (1985) has described t h i s s i t u a t i o n as a "double bind" or "no-win" s i t u a t i o n i n which no matter what the parents do they fear, and sometimes experience, negative consequences for the c h i l d . She reports that parents recognize the expectation that they must consider professionals to be the "experts" and fear negative repercussions for the c h i l d should they not comply. At the same time parents consider themselves to be "expert" with regard to t h e i r own c h i l d ' s care and fear that i f they don't act as advocates t h e i r c h i l d w i l l s u f f e r . Thus, not only do they f e e l uncertain about entrusting the care of t h e i r c h i l d to others but i n addition they f e e l uncertain about t h e i r r o l e . Being a parent of a c h i l d i n h o s p i t a l had been described as "having a job without a job d e s c r i p t i o n " (Knox and Hayes, 1981, p.223). What parents expect i s that they w i l l share r e s p o n s i b i l i t y for care with the professionals and that mutually acceptable care w i l l be negotiated, but that expectation often i s not f u l f i l l e d (Knox & Hayes, 1981; Robinson, 1985). The findings indicate that wives' perceptions of the experience of i n s t i t u t i o n a l i z i n g t h e i r husbands c l o s e l y resemble the findings i n the l i t e r a t u r e about parents of h o s p i t a l i z e d children. During the caregiving experience at home, wives learn to care for t h e i r husbands and become adept 134 at managing most behaviour. They are uncertain about r e l y i n g on s t a f f to do a l l that they have learned to do, e s p e c i a l l y i f s t a f f don't seem prepared to manage a patient with Alzheimer's disease. They too are caught i n a "double bind" as they f e e l g u i l t y i f they don't intervene i n order to ensure good care, but fear that actions as advocates might have negative consequences for t h e i r husbands. Contrary to suggestions i n the l i t e r a t u r e that caregivers " r e l i n q u i s h " care to professionals (Colerick & George, 1986; Smallegan, 1985; Soldo & Myllyluoma 1983), l i k e the parents of h o s p i t a l i z e d children, wives do not r e l i n q u i s h care e n t i r e l y but rather delegate i t . They r e t a i n ultimate r e s p o n s i b i l i t y f o r t h e i r husbands well-being but do not know how best to f u l f i l that r e s p o n s i b i l i t y . Uncertainty About Li v i n g as Married Widow Wives i n the study express uncertainty about the ambiguous state of l i v i n g alone and yet continuing to be spouses. The fa c t that t h i s r o l e i s s i m i l a r l y documented and d e s c r i p t i v e l y l a b e l l e d by Brandwein and associates (1979) as "married widow" prompted the researcher to use t h i s term. These authors report that the spouses whose partners were i n s t i t u t i o n a l i z e d were " i n limbo", or "neither here nor there", since i n some aspects of t h e i r l i v e s spouses experience the negative a t t r i b u t e s of widowhood but at the same time they are not free to engage i n new r e l a t i o n s h i p s or s t a r t a new l i f e (p.7). The married widow.state described i n t h i s study may also 135 be described as "betwixt and between" i n that wives describe f e e l i n g as i f they are neither wives nor widows and yet both wives and widows. Turner (1970) has described c u l t u r a l l y defined periods of being "betwixt and between" as t r a n s i t i o n a l stages i n the r i t e s of passage from one state to another. Rites of passage or ceremonies which a s s i s t the i n d i v i d u a l to move from one c u l t u r a l l y defined p o s i t i o n to another include preliminal r i t e s ( r i t e s of separation), l i m i n a l r i t e s ( r i t e s of transition) and post l i m i n a l r i t e s ( r i t e s of incorporation) (van Gennep, 1960). Examples of t r a n s i t i o n s which s o c i e t i e s often recognize through r i t e s of passage occur at puberty, marriage and death. T r a n s i t i o n a l beings i n recognized states of being betwixt and between experience ambiguity, paradox and confusion since society's d e f i n i t i o n s do not allow for the existence of someone who i s neither here nor there (Turner, 1970). The uncertainty experienced by wives about how to l i v e as married widows arises from the contradictory state of being neither wife nor widow and yet both. This uncertain state i s as uncomfortable for them as i t i s for anyone i n a t r a n s i t i o n a l state; however, t h e i r p a r t i c u l a r experience of uncertainty i s increased because t h i s t r a n s i t i o n a l state i s not s o c i a l l y recognized and because i t i s not possible to predict when i t w i l l come to an end. The findings indicate that because friends, family and others also f e e l uncertain about the married widow state, they contribute to uncertainty about the r o l e wives should perform. 136 Factors Influencing State of Uncertainty Several findings concerning factors influencing the wives' uncertainty contribute to understanding of the experience as presented i n the l i t e r a t u r e . Findings concerning the admission process, the qu a l i t y of care, and the responses of others to the wives' roles are p a r t i c u l a r l y s i g n i f i c a n t i n t h i s regard. The caregiving l i t e r a t u r e reviewed e a r l i e r describes the d i f f i c u l t y involved i n making the decision about admission and reports that subjective factors such as the caregivers' perception of well-being or burden determines whether or not the dependent i n d i v i d u a l i s admitted to an i n s t i t u t i o n (Colerick & George, 1986; Z a r i t et a l . , 1986). A common reason for admission was found to be that the caregiver "couldn't take i t any more" (Chenoweth & Spencer, 1986, p.271). The findings of t h i s study confirm the d i f f i c u l t y experienced by caregivers i n making the decision and indicate that the admission process, including the circumstances surrounding admission, the f a c i l i t y chosen for admission and the reactions of others to admission, continues to influence the wives' experience following i n s t i t u t i o n a l i z a t i o n . One i n t e r e s t i n g finding i s that the caregivers' subjective perception that they can no longer cope i s necessary to reduce t h e i r uncertainty about doing the best thing. This finding suggests that "not being able to take i t any more" i s not only a reason for admission as recorded i n 137 the l i t e r a t u r e but i s the c r i t e r i o n used by the wives to decide when the time for admission has come. The f e e l i n g that they can no longer cope d i f f e r e n t i a t e s wives who appreciate the recommendations of others that they have t h e i r husbands admitted from those who consider such suggestions to be unwarranted. Furthermore, when wives agree to admission before they f e e l ready they experience l i n g e r i n g resentment and regret. This finding suggests that admitting husbands i n order to protect wives from reaching the stage of i n a b i l i t y to cope can contribute to long-standing uncertainty that agreeing to i n s t i t u t i o n a l i z a t i o n was the best thing to do. The s i g n i f i c a n c e of the qual i t y of care i n influencing the wives' uncertainty i s not an unexpected finding. D i s s a t i s f a c t i o n with care i s one of the experiences following i n s t i t u t i o n a l i z a t i o n i d e n t i f i e d i n previous research (Brandwein et a l . 1979; Chenoweth & Spencer, 1986). The findings of t h i s study contribute to awareness of what qu a l i t y of care means to wives. The wives' confidence i n health care providers i s determined by evaluation of the qual i t y of care according to ce r t a i n c r i t e r i a . Care which increases confidence includes cleanliness i n appearance of husbands and f a c i l i t i e s , prevention of premature loss of a b i l i t y , and consideration for husbands' i n d i v i d u a l dignity and worth. Study findings also indicate that the wives expect that the goal of the s t a f f should be consistent with t h e i r own goal of keeping t h e i r husbands as comfortable as possible i n the time 138 remaining. When interventions such as confinement and administration of medications are used i n s p i t e of t h e i r detrimental e f f e c t s on husbands, the goal of the s t a f f i s seen to be incongruent with expectations, and uncertainty i s increased. Lack of confidence i n health care providers and lack of congruence between what i s expected and what i s experienced have both been i d e n t i f i e d as factors influencing uncertainty i n i l l n e s s (Michel, 1988). A s t r i k i n g finding i s the degree to which uncertainty i s increased by s o c i a l reactions which demonstrate that others, e i t h e r lay persons or professionals, f a i l to share the wives' point of view. The reactions of others during the admission process, the reactions of others toward the wives' r o l e i n the i n s t i t u t i o n , and s o c i a l expectations about how wives should l i v e as married widows a l l have s i g n i f i c a n t influence i n t h i s regard. This finding i s congruent with Kleinman's explanatory model framework (Kleinman, 1977, 1978) which explains that problems a r i s e i n interactions i n which explanatory models of r e a l i t y d i f f e r . The wives' point of view r e f l e c t s t h e i r knowledge, values, goals and expectations and constitutes t h e i r explanatory model of the experience of i n s t i t u t i o n a l i z a t i o n of t h e i r husbands. Differences between the explanatory models of the wives and the explanatory models of others regarding t h i s experience create the problem of uncertainty for the wives. Kleinman's model focuses on problems i n health care re l a t i o n s h i p s which occur because of differences i n 139 explanatory models between three sectors: popular, professional and fo l k . The findings of t h i s study indicate that differences i n explanatory models within the popular sector can cause problems for c l i e n t s i n the health care system as well. Wives experience enhanced uncertainty as a r e s u l t of d i f f e r i n g views of friends, r e l a t i v e s and others i n t h e i r s o c i a l world as well as d i f f e r i n g views of professionals. D i f f e r i n g views are considered by wives to be indications of lack of support and r e s u l t i n withdrawal from those expressing them. The r e s u l t for wives i s an increase i n already s i g n i f i c a n t s o c i a l i s o l a t i o n . Lack of s o c i a l support has been found to be another factor which has been found to increase uncertainty i n i l l n e s s (Michel, 1988). Management i n State of Uncertainty The strategies used by the wives to manage t h e i r uncertainty and to manage uncomfortable feelings associated with uncertainty have been documented previously as strategies of coping with stress generally and with uncertainty s p e c i f i c a l l y . Since uncertainty i s d i r e c t l y linked with stress i t i s understandable that ways i n which wives cope with uncertainty mirror the ways of coping with stress as presented by Lazarus and Folkman (1984). These include distancing, s e l f - c o n t r o l (keeping feelings to s e l f ) , seeking s o c i a l support, accepting r e s p o n s i b i l i t y , escape-avoidance, p l a n f u l problem-solving and p o s i t i v e reappraisal (finding meaning). To t h i s l i s t Michel (1981) adds v i g i l a n c e and information seeking as coping strategies 140 s p e c i f i c a l l y related to coping with uncertainty i n i l l n e s s . The use of s i m i l a r coping strategies has also been documented i n studies of i n d i v i d u a l s managing uncertainty i n s p e c i f i c i l l n e s s e s such as breast cancer (Hilton, 1988). One s i g n i f i c a n t finding i s that management strategies often place wives i n c o n f l i c t with others. The existence of c o n f l i c t between s t a f f of i n s t i t u t i o n s and families i s recognized i n the caregiving l i t e r a t u r e (Brandwein et a l . , 1979; Goldstein, 1983; Schmidt, 1987; Shuttlesworth et a l . , 1982). Two possible causes for t h i s c o n f l i c t are frequently suggested: f i r s t , that the c o n f l i c t r e s u l t s from displacement of family emotions such as anger and regret regarding the necessity to i n s t i t u t i o n a l i z e onto s t a f f ; second, that c o n f l i c t r e s u l t s because of the d i f f i c u l t y the spouse has i n r e l i n q u i s h i n g the caregiving r o l e (Brandwein et a l . , 1979; Kapust, 1982; Schmidt, 1987). In contrast, from the wives 7 perspective, c o n f l i c t r e s u l t s when factors such as uncertainty about the q u a l i t y of care increase the use of management strategies such as v i g i l a n c e and advocacy. Another perspective regarding the c o n f l i c t i s that doubts concerning the degree to which professionals can be trusted place families i n a "no-win s i t u a t i o n " i n which t h e i r e f f o r t s at advocacy often r e s u l t i n them being l a b e l l e d as trouble-makers (Robinson, 1985). According to Robinson & Thorne (1984), behaviours that professionals l a b e l as trouble-making are manifestations of the c o n f l i c t , f r u s t r a t i o n and anxiety which are inherent i n what they have 141 c a l l e d "the stage of disenchantment". During t h i s stage i n health care relationships, family t r u s t i n the congruency of t h e i r own point of view with that of health care professionals i s shaken. This perspective regarding health care relationships i s congruent with the findings of t h i s study which indicate that behaviours such as v i g i l a n c e and advocacy which often bring wives into c o n f l i c t with professionals are manifestations of uncertainty. Robinson & Thorne (1984) describe the stage of disenchantment as uncomfortable and recommend that professionals encourage movement towards the stage of "guarded a l l i a n c e " . In t h i s stage the strengths and l i m i t a t i o n s of health care providers are acknowledged thus opening the door for "negotiating mutually s a t i s f y i n g care" (p.599). Kleinman's framework suggests that not only the strengths and l i m i t a t i o n s of health care providers but the explanatory models of both professional and lay sectors must be acknowledged i n order to negotiate such care. The wives i n t h i s study who had experienced negotiation with s t a f f did indeed report s a t i s f a c t i o n as a r e s u l t of decreased uncertainty about care. The findings of t h i s study also indicate that s t a f f recognition for the personal worth and di g n i t y of the family member would be key to entering a stage of "guarded a l l i a n c e " . When wives perceive that s t a f f have the personal i n t e r e s t of t h e i r husbands at heart, they are more l i k e l y to believe that the s t a f f are doing the best that they can under 142 d i f f i c u l t conditions, and more l i k e l y to a t t r i b u t e t h e i r husbands' physical deterioration to Alzheimer's disease rather than to s t a f f neglect. Maintaining attachment i s a management strategy which requires further discussion. Although the strength of the marriage t i e s between caregivers and t h e i r spouses has been recognized (Brandwein et a l . 1979; Colman, Sommers & Leonard, 1982; Gilhooly, 1986; Laurence, 1985), the findings indicate that wives attempts to maintain t h e i r marriage t i e s are often misunderstood. Wives are distressed by pressure from family, friends, and health care professionals to reduce the time spent with t h e i r husbands. Wives are also distressed by suggestions that they "get out and do things" as i f t h e i r husband were "gone". The l i t e r a t u r e suggests that s o c i a l i s o l a t i o n following i n s t i t u t i o n a l i z a t i o n may r e s u l t from withdrawal of friends and family p r i o r to i n s t i t u t i o n a l i z a t i o n or from the f a i l u r e of others to recognize the need for support once i n s t i t u t i o n a l i z a t i o n has taken place (Colerick & George, 1986; Z a r i t et a l . 1986). The findings of t h i s study support both of these suggestions. An additional finding, however, i s that wives withdraw from those who demonstrate lack of understanding for t h e i r need to continue attachment to husbands. Hir s c h f e l d (1983) found that the a b i l i t y to perceive impaired persons as reciprocating i n re l a t i o n s h i p s by v i r t u e of t h e i r existence d i f f e r e n t i a t e d those who continued caring at home from those who gave up more 143 r e a d i l y . The findings of t h i s study indicate that t h i s a b i l i t y remains following i n s t i t u t i o n a l i z a t i o n . Wives are able to f i n d comfort i n simply being with t h e i r husbands. They learn to u t i l i z e the past to reach t h e i r husbands and f e e l rewarded by any response. In summary, management strategies such as v i g i l a n c e , advocacy and maintaining attachment which are often the cause of c o n f l i c t between wives, families, friends and professionals can be understood as ways of managing uncertainty. Lack of understanding of these strategies i s another source of burden experienced by wives following i n s t i t u t i o n a l i z a t i o n . Total Experience i s "Worse Than Death" The finding that the t o t a l experience of i n s t i t u t i o n a l i z a t i o n i s "worse than death" confirms the f e e l i n g expressed by caregivers and recorded i n the caregiving l i t e r a t u r e that death would be preferable to i n s t i t u t i o n a l i z a t i o n (Gilhooly, 1986; Hirschfeld, 1983; Locker, 1981). " I t ' s worse than death" i s the phrase used by wives to sum up t h e i r experience. The l i t e r a t u r e on loss and g r i e f helps to explain t h i s finding. Anticipatory g r i e f occurs whenever the impending nature of death permits " g r i e f work" to begin before the actual death (Gerber, Rusalem, Hannon, Battin & Arkin, 1975; Rando, 1986). Rando (1986) contends that anticipatory g r i e f focuses on three actual losses rather than on the i n d i v i d u a l who i s dying: losses that have already occurred, ongoing losses such 144 as progressive d e b i l i t a t i o n , and losses yet to come such as the future together. Unfortunately, the findings of t h i s study indicate that t h i s form of grieving i s not recognized by wives or by others. The confusion created by t h e i r married widow state stems from lack of norms for appropriate behaviour for t h e i r g r i e f and lack of s o c i a l support such as would be provided i n the event of t h e i r husbands' death (Fulton & Gottesman, 1980; Lezak, 1978). Thus wives do not allow themselves to grieve but instead manage by being strong, keeping busy, seeking support from those who understand and being thankful. The wives consider that slow death i n an i n s t i t u t i o n i s worse than death for t h e i r husbands. The l i t e r a t u r e supports t h i s finding with recognition of the s t r e s s f u l nature of the experience of watching a spouse slowly die (Gerber et a l . , 1975). Slow death with Alzheimer's disease i s p a r t i c u l a r l y d i f f i c u l t . As Toynbee (cited i n Kapust, 1982) has said: "This premature death of a human s p i r i t i n advance of the death of i t s body i s more appalling than premature death i n which s p i r i t and body die simultaneously. I t i s an outrage committed by nature on human di g n i t y " (p. 81). F i n a l l y , the entire state of uncertainty was experienced by the wives as worse than death. "Worse than death" i s a summary statement describing a l l of the d i s t r e s s i n g feelings which were generated by t h i s uncertain state. These included anxiety, fear, anger, f r u s t r a t i o n , regret, depression, g u i l t and sorrow which have a l l been recorded previously as 145 outcomes of uncertainty (Hilton, 1988; Michel, 1981, 1988). Dealing with uncertainty has been described as a "major adaptive task" (Lazarus & Folkman, 1984, p.91). The d i s t r e s s experienced by wives who i n s t i t u t i o n a l i z e t h e i r husbands i s a further i n d i c a t i o n of the l i n k between uncertainty and stress and an further i n d i c a t i o n that care needed for the caregivers involves assistance i n reducing and managing t h e i r uncertain state. The wives des c r i p t i o n of the t o t a l experience as worse than death, i s a c l e a r i n d i c a t i o n of t h e i r continuing emotional burden following i n s t i t u t i o n a l i z a t i o n . Summary In t h i s chapter, the findings of t h i s study were discussed i n r e l a t i o n to relevant l i t e r a t u r e for the purpose of demonstrating the contribution of t h i s study of the wives' experience to current knowledge. Findings r e l a t i n g to each section of the uncertainty framework which constituted the wives' explanatory model of the experience were discussed. The findings of t h i s study of the experience from the wives' perspective, d i f f e r s from, confirms and amplifies various aspects of e x i s t i n g knowledge. Two major contributions to current knowledge a r i s e from the d e t a i l s of the discussion. One i s confirmation of the suggestion i n the caregiving l i t e r a t u r e that the burden of caregiving may remain following i n s t i t u t i o n a l i z a t i o n necessitating continuing care for the caregiver. Caregivers i d e n t i f y t h e i r burden as uncertainty, describe various 146 factors influencing t h e i r uncertainty and provide accounts of management i n t h e i r uncertain state. Confirmation of the need f o r continuing care for caregivers following i n s t i t u t i o n a l i z a t i o n i s found i n t h e i r summary of t h e i r experience as "worse than death". A second contribution to current knowledge re l a t e s to the wives' experience of differences between t h e i r explanatory model and the explanatory models of professionals and others i n t h e i r s o c i a l world. As predicted by Kleinman's explanatory model framework, problems such as lack of support and c o n f l i c t are experienced as a r e s u l t . Wives experience increased uncertainty whenever these differences occur. Only through the study of the experience of caregivers from t h e i r own perspective can such differences be i d e n t i f i e d and taken into account. 147 Chapter 6 SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING In t h i s chapter a summary of the study, the conclusions a r i s i n g from the findings and the implications f o r nursing practice, nursing education and nursing research w i l l be presented. Summary and Conclusions Most victims of Alzheimer's disease are cared for at home for lengthy periods, however, eventual i n s t i t u t i o n a l i z a t i o n i s almost i n e v i t a b l e . Therefore, as the incidence of Alzheimer's disease increases along with the increasingly aging population, the frequency of i n t e r a c t i o n between professional and lay caregivers w i l l increase as well. Because e l d e r l y wives are members of the largest group of caregivers, the group of caregivers at greatest r i s k f o r s t r a i n and the group of caregivers most r e s i s t a n t to rel i n q u i s h i n g t h e i r caregiving r o l e they were selected as par t i c i p a n t s i n t h i s study. A review of the l i t e r a t u r e provided evidence that caregiver burden was not l i k e l y to be completely r e l i e v e d upon i n s t i t u t i o n a l i z a t i o n of the patient. However, differences i n perceptions and expectations between lay caregivers and professionals reduce the p o s s i b i l i t y that caregivers w i l l receive appropriate support. The i n i t i a l period of i n s t i t u t i o n a l i z a t i o n was chosen f o r study since the t r a n s i t i o n from home to hospital was i d e n t i f i e d as a d i f f i c u l t time having great pot e n t i a l for c o n f l i c t between 148 the two groups. The problem of c o n f l i c t between professional and lay caregivers was conceptualized as a problem of difference i n explanatory models between cultures (Kleinman, 1977, 1978). The need to explore the experience from the caregivers 7 point of view was therefore i d e n t i f i e d . Phenomenology was selected as the research method because of i t s unique focus on revealing the experience from the perspective of the par t i c i p a n t . This approach was consistent with the conceptualization of the problem and with the objective of contributing r e s u l t s which would be s i g n i f i c a n t for nursing. The eight women who par t i c i p a t e d i n the study were contacted through two agencies i n the metropolitan area of a western Canadian c i t y . They were were Anglo-Canadian women between 64 and 78 years old whose husbands with Alzheimer's disease had been l i v i n g i n i n s t i t u t i o n s for between 4 and 13 months. Data were gathered through i n t e r a c t i v e interviews which were taped and transcribed. Each p a r t i c i p a n t was interviewed twice. Analysis was a non-linear r e f l e c t i v e process accomplished by going back and forth between concrete t r a n s c r i p t i o n s of the interviews and abstract thoughts of the researcher i n order to discover and val i d a t e meanings, categories and rel a t i o n s h i p s . The insights achieved were synthesized and integrated into a consistent description of the experience. This de s c r i p t i o n constitutes the ess e n t i a l structure of the experience from the perspective of the e l d e r l y wife. Because 149 i t was derived from the accounts of the wives themselves i t i s also t h e i r explanatory model of the experience. Throughout the accounts of the experience, uncertainty was the pervasive and unifying theme. The source of uncertainty experienced by the wives was two forms of separation: separation of husband from home and separation of husband and wife. These forms of separation had p a r a l l e l structures including expressions of uncertainty, factors influencing uncertainty and management i n a state of uncertainty. The summary description of the t o t a l experience fo r the wives was that i t was worse than death. Separation of husbands from home was a source of uncertainty about whether or not the wives were doing the best thing for t h e i r husbands. In re l a t i o n s h i p to doing the best thing wives expressed uncertainty about entrusting husbands' care to others and about t h e i r r o l e i n t h e i r husbands' care. The admission process, the q u a l i t y of care which husbands received, s t a f f responses to wives as caregivers, reactions of other patients to husbands' behaviour and husbands' responses to i n s t i t u t i o n a l i z a t i o n influenced the wives' uncertainty. Wives managed uncertainty by doing a l l that they could to ensure t h e i r husbands' well-being by taking them the comforts of home and by being v i g i l a n t . Through v i g i l a n c e wives gathered information needed to be advocates for t h e i r husbands and to supplement t h e i r care. They managed d i s t r e s s i n g feelings by being thankful, seeking support of others, finding humour and 150 distancing themselves from the i n s t i t u t i o n . Separation of husbands and wives was a source of uncertainty because, as a r e s u l t , wives became married widows. Lack of s o c i a l recognition f o r t h i s state and lack of norms fo r r o l e performance resulted i n uncertainty. Inconsistent s o c i a l responses and v a r i a b i l i t y i n husbands' recognition of them as wives influenced t h e i r uncertainty. The wives managed uncomfortable feelings generated by uncertainty by maintaining attachment to t h e i r husbands and by adapting to being alone. Maintaining attachment was accomplished by establishing a comfortable v i s i t i n g schedule, by being there j u s t i n case t h e i r husbands were aware, and by finding ways of reaching husbands. Adapting to being alone was accomplished by being strong, seeking support from those who understood, keeping busy and being thankful. The wives' summary description of the experience was that i t was worse than death. "Worse than death" described the way the wives f e l t about Alzheimer's disease, having husbands i n i n s t i t u t i o n s , l i v i n g as married widows and about the encompassing state of uncertainty. Death, though undesirable, was seen as the source of c e r t a i n t y f o r themselves and f o r t h e i r husbands. Two major conclusions can be drawn from the findings: one regarding the caregivers' burden and continuing need f o r care and one regarding the s i g n i f i c a n c e of d i f f e r i n g explanatory models of the experience. F i r s t , the findings confirm that the i n i t i a l period of 151 i n s t i t u t i o n a l i z a t i o n i s an extremely d i f f i c u l t time f o r the e l d e r l y wife caregiver. Upon admission, the wives delegated rather than relinquished care. Thus they continued to carry the burden of r e s p o n s i b i l i t y . An additional burden suffered as a consequence of i n s t i t u t i o n a l i z a t i o n of husbands was the state of married widowhood. Uncertainty was the way i n which these burdens were experienced by the wives. Because of the established l i n k between uncertainty and stress, the continuing need for support for caregivers during the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n i s cl e a r . Second, i t i s cl e a r that i f appropriate care and support i s to be provided for caregivers i t i s e s s e n t i a l that t h e i r explanatory models of the experience be recognized. The findings indicate that d i f f e r i n g explanatory models r e s u l t i n c o n f l i c t between professionals and lay caregivers and that these differences enhance the burden of uncertainty experienced by the wives. This was the case when the differences existed between professionals and caregivers and also when differences existed between caregivers and others i n t h e i r s o c i a l world. Therefore, i t i s imperative that the explanatory models of the experience be recognized and used as a guide for providing support which i s s e n s i t i v e to the caregivers' needs. Implications for Nursing Practice Many implications for nursing practice a r i s e from the findings of the study. These implications are s i g n i f i c a n t not only f o r nurses working i n the f a c i l i t i e s to which the 152 husbands are admitted but to nurses i n the community as well. One important implication i s that nurses must explore the in d i v i d u a l explanatory models of those whose spouses are i n s t i t u t i o n a l i z e d with Alzheimer's disease. When explanatory models are acknowledged, care can be negotiated which provides needed reassurance, prevents c o n f l i c t and reduces caregiver burden. A l l of the implications following are based on the explanatory models of eight wives. Their accounts had i n common the es s e n t i a l structure of the experience as presented; however, i n addition, within each of t h e i r accounts there were i n d i v i d u a l differences which should influence care. Because of the continuing e f f e c t of the admission process on caregiver burden following i n s t i t u t i o n a l i z a t i o n , implications f o r practice begin p r i o r to admission. Following i n s t i t u t i o n a l i z a t i o n , f e e l i n g that they could not have coped any longer i s esse n t i a l to reassure wives that they are doing the best thing. Awareness of the resentment, regret and g u i l t experienced when t h i s i s not the case should a f f e c t the way i n which others attempt to influence the caregiver's decision. Nurses should be prepared to a s s i s t caregivers to i d e n t i f y c r i t e r i a f or judging when they should no longer attempt to cope but should nevertheless be prepared to recognize when caregivers are not ready. Also, because caregivers must usually be desperate before agreeing to admission, nurses should work towards es t a b l i s h i n g services which would be available on a short-term basis which could 153 prevent admission to a f a c i l i t y that i s unacceptable to the caregiver or inappropriate for Alzheimer's patients. Even when such an admission i s temporary, the r e s u l t can be permanent physical loss for the patient and long-term g u i l t for the caregiver. The e s s e n t i a l structure of the experience of i n s t i t u t i o n a l i z a t i o n of a husband with Alzheimer's disease was framed by the unifying theme of uncertainty. Wives uncertainty about doing the best thing i s not su r p r i s i n g given t h e i r commitment to maintaining t h e i r marriages and keeping husbands i n t h e i r own homes. When spouses are admitted, nurses should therefore be prepared to support caregivers who are i n an uncertain state. Supporting caregivers who are uncertain should include attending to factors which influence uncertainty. Uncertainty could be reduced i f nurses demonstrated that t h e i r goal for the care of the spouse was the same as that of the caregiver: to provide not just custodial care but both physical and personal care which attends to the q u a l i t y of l i f e and demonstrates respect for i n d i v i d u a l i t y , worth and dig n i t y of each patient. The use of medication should be avoided as much as possible since medications not only contribute to premature loss of a b i l i t y but convince caregivers that t h e i r spouses' well-being i s not of primary concern. Communicating an attitude of caring towards the in d i v i d u a l patient has a remarkably comforting e f f e c t on family caregivers. 154 Nurses should ask caregivers what i s important to them about care. Caregivers should be considered to be experts about management of t h e i r spouses 7 behaviour and should be included as much as possible i n decision-making about care. Being included i n decision-making should also reduce apprehension about what w i l l happen i f others object to t h e i r spouses' behaviour. A suggested goal would be that caregiver and s t a f f reach a stage of "guarded a l l i a n c e " i n which "t r u s t that acknowledges the strengths and l i m i t a t i o n s of health care providers" i s established (Robinson & Thorne, 1984, p.599). Caregivers should be encouraged to f e e l that they have a mutually acceptable and recognized r o l e on the health care team. Nurses could reduce wives' uncertainty about being married widows by recognizing the s i t u a t i o n as caregivers see i t . No matter what the qual i t y of the marriage, and no matter what the degree of cognitive impairment, the desire to maintain the marriage t i e s remains strong. Caregivers do not assume that t h e i r spouses are unaware but u t i l i z e i n d i v i d u a l approaches to evaluate and appreciate t h e i r responses. As well, caregivers e s t a b l i s h a v i s i t i n g schedule that i s comfortable f o r them. Nurses and others who c r i t i c i z e the amount of v i s i t i n g f or being eit h e r too much or too l i t t l e create discomfort for the caregiver and distance themselves as sources of support. Caregivers also experience uncertainty about l i v i n g l i f e alone. Nurses could help caregivers to understand that they 155 are a c t u a l l y grieving for losses, past, present and future, incurred by t h e i r husbands' disease and by t h e i r i n s t i t u t i o n a l i z a t i o n , and that allowing themselves to express these feelings may be therapeutic (Rando, 1984). Although findings of the study confirm that support groups are h e l p f u l f o r some wives for sharing feelings, others may benefit more from contact with an in d i v i d u a l who demonstrates understanding of t h e i r experience as they see i t . Nurses are needed as educators regarding Alzheimer's disease and i t s e f f e c t s on caregivers. The findings of the study indicate that reactions of those who do not understand the experience s i g n i f i c a n t l y increase the wives' uncertainty. Information sessions could be arranged f o r family and friends of persons diagnosed with Alzheimer's disease. Findings indicate numerous ways i n which increased awareness of the caregiver's experience on the part of family, friends and others with whom the caregiver comes i n contact could be of benefit. For example, others need to know that because v i s i t s from f a m i l i a r people make the patient happy, regardless of the fact that the patient doesn't remember, they are an important source of comfort f o r the spouse. They should also know that although the caregivers may withdraw completely for a period of time a f t e r the spouse i s i n s t i t u t i o n a l i z e d , the need f o r support remains and friends, family and nurses should continue to be avai l a b l e to provide support when i t i s required. 156 Implications for Nursing Education The findings of the study also hold implications for nursing education. The f i r s t implication i s that nursing education should prepare nurses to e l i c i t the explanatory models of c l i e n t s and families and to u t i l i z e t h i s knowledge to negotiate appropriate care. I t i s p a r t i c u l a r l y important that nurses recognize p o t e n t i a l differences between explanatory models of lay persons and professionals. However, nursing education should also prepare nurses to recognize that differences e x i s t not only between but within conventionally recognized c u l t u r a l groups. Education regarding q u a l i t y nursing care should include the f a c t that families search for evidence that professionals respect the personal d i g n i t y and in d i v i d u a l importance of every patient regardless of the patient's apparent state of awareness. Only i n the presence of such evidence can families f e e l reassured that professionals can be trusted to care f o r t h e i r loved one. The findings of the study indicate that conveying respect for the in d i v i d u a l does not take a great deal of time but can be achieved through approaches such as the use of humour, c a l l i n g the i n d i v i d u a l by name, giv i n g a hug, putting up personal pictures or providing something extra. Education i s needed to prepare nurses to manage patients with Alzheimer's disease. The increased incidence of the disease ensures that nurses w i l l come into contact with i t s victims at some time during t h e i r careers. Nurses who do not 157 know how to manage behaviours associated with the disease are l i k e l y to provide inappropriate care which i s disturbing for patients and upsetting for fam i l i e s . Since most Alzheimer's patients are i n s t i t u t i o n a l i z e d i n intermediate or long-term care f a c i l i t i e s where the majority of s t a f f are care aides, courses i n gerontology should prepare nurses to teach and to provide leadership regarding the care of Alzheimer's patients for whom they are responsible. Preparation i s needed within nursing education to a s s i s t nurses to support caregivers as well as patients. The uncertainty experienced by the wives i n t h i s study indicates that i t would be necessary to study uncertainty as a concept i n order to provide appropriate support. Understanding uncertainty, i t s sources, the factors that influence i t and i t s management can help to avoid c o n f l i c t and ensure e f f e c t i v e care. Implications for Nursing Research Several implications for nursing research a r i s e from the findings of the study. This study explored the experience of ju s t one p a r t i c u l a r group of caregivers. The study of other groups, and comparisons of d i f f e r e n t groups are needed as well. Also, studies comparing explanatory models of caregivers with professionals and with family members would be h e l p f u l i n i d e n t i f y i n g the source of the problem when differences occur. For example, i t would be h e l p f u l to understand a l l points of view i n si t u a t i o n s i n which 158 professionals and family pressure caregivers to admit t h e i r spouses while caregivers f e e l that they are s t i l l able to cope. This study focused on the i n i t i a l period of i n s t i t u t i o n a l i z a t i o n . Studies are needed which reveal the experience of caregivers at d i f f e r e n t times i n the experience. Experiences following lengthy i n s t i t u t i o n a l i z a t i o n and experiences following the death of the spouse may provide further indications of necessary support. Research designed to reveal the expertise of family caregivers could provide valuable information regarding management of d i f f i c u l t behaviour associated with Alzheimer's disease. The findings of the study indicate that caregivers often use great ingenuity during t h e i r caregiving experience at home. Their knowledge and experience should be u t i l i z e d i n professional care. Research i s needed for the purpose of fin d i n g ways of managing disturbing behaviours such as those which often occur at the time of admission. Alternatives to medication need to be explored with respect to management of a l l behaviour which i s l i k e l y to be experienced by others as obj ectionable. In conclusion, dementia has been described as a "bio-psycho-social phenomenon i n which the b i o l o g i c a l aspects are not currently treatable but the psychosocial are often amenable to intervention (Kahn, c i t e d i n Z a r i t et a l . , 1985, p.2). 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The Gerontologist. 26(3), 260-266. 169 APPENDIX B Consent for Telephone Contact INSTITUTIONALIZATION OF A SPOUSE WITH ALZHEIMER'S DISEASE: A PHENOMENOLOGICAL STUDY OF THE EXPERIENCE OF THE ELDERLY WIFE CAREGIVER I would l i k e to hear more about t h i s study. I give permission f o r Sandra Whytock to telephone me I would not l i k e to hear more about t h i s study I f you would l i k e to hear more about t h i s study, please provide your name and telephone number i n the space provided below. Thank you. Name: Telephone: APPENDIX D Demographic Data Sheet I n i t i a l s : Interview code Interview date: . Age: Birthplace: Occupation: Husband's Age: Husband's Occupation: Children: Residence of children: Other occupants of residence Date of Husband's Diagnosis: Date of Admission to care f a c i l i t y : 172 APPENDIX E Interview Guide 1. What would a t y p i c a l day be l i k e for you before your husband was admitted to a care f a c i l i t y ? 2. Can you t e l l me about how the decision was made that your husband should be admitted to a f a c i l i t y ? 3. What d i d you think about care f a c i l i t i e s before your husband was admitted? 4. Can you describe what the day of your husband's admission was l i k e ? What was i t l i k e to leave him at the f a c i l i t y ? How did your husband react? 5. How would you describe your l i f e (a t y p i c a l day) i n the f i r s t few days or weeks following your husband's admission? 6. What was i t l i k e for you to v i s i t him i n the f a c i l i t y at f i r s t ? What i s i t l i k e now? 7. Is i t d i f f e r e n t for you to have him i n a f a c i l i t y now from what i t was l i k e at f i r s t ? 8. Is there anyone or anything that was h e l p f u l when your husband was admitted? 

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