In normal aging, decline in mental skills is modest with no consequential decrease in ability to care for oneself. Normally, older adults are able to maintain activities of daily living (ADLs) such as bathing, dressing, transferring, and toileting, and instrumental activities of daily living (IADLs), which include shopping, cooking, housekeeping, laundry, and handling money (Schaie, 1989). Nevertheless, one in 10 persons over 65 and nearly half of those over 85 have Alzheimer’s disease, a form of dementia (The Alzheimer’s Association, 1999) and, thus, have problems with IADLs, ADLs or both, and need assistance with care decisions. Often these decisions are left to adult offspring who are ill prepared to cope with role changes and parent-caring responsibilities (Archbold, 1980; Brody, Johnsen, Fulcomer & Lang, 1983; Brody, Kleban, Johnsen, Hoffman & Schoonover, 1987; Cantor 1883; Stoller, 1982).
What is the experience of these adult children as they negotiate their way through the their own internal voices, their family of origin and the healthcare system? Have we been asking the right questions when we assume that all is reduced to family obligation and responsibility? This project was designed to elicit and understand the experience of those adult offspring who are making care decisions for a mentally impaired parent. Chapter I includes background and significance of the project, the philosophical framework in which the project question is poised, the project question, and definition of terms.
Background and Significance of the Project
Although almost half (47%) of persons 85 and older will have mental impairment (Schaie, 1989), many elderly do not make plans for dealing with possible changes in mental status. As elderly “age in place”, it is frequently left to family members to decide about care and living arrangements. For most family members these care decisions about the care of elderly parent are difficult at best (Pfeiffer, 1995), and the number of people involved in making these decisions will increase as life expectancy increases and the population of the United States continues to age.
Life expectancy is the average number of years people born in a given year are expected to live based on a set of age-specific death rates. At the beginning of the 20th century, life expectancy at birth was 47.3 years. Today, at the beginning of the 21st century, the average life expectancy has increased dramatically at birth to nearly 77 years. In addition, life expectancy for every age group has also increased during the past century. “Based on today’s age-specific death rates, individuals aged 65 years can be expected to live an average of 18 more years, for a total of 83 years. Those aged 75 years can be expected to live an average of 11 more years, for a total of 86 years” (http://www.health.gov/healthypeople/Document/HTML/Volume1/goal.htm, August 14, 2000).
Persons older than 65 now comprise 12.7% of the population of the United States (Statistical Abstract of the United States, 1999, http://www.census.gov/statab/www/states/md.txt, August 14, 2000). By the year 2020, 20% of the population will be older than 65 years (US Bureau of the Census, 1996). The largest percentage of growth is in elders 85 and over, a group at high risk for mental disorders such as Alzheimer’s disease. Almost 19 million Americans report they have a family member with Alzheimer’s, and 37 million know someone with the disease (The Alzheimer’s Association, 1999). Since 7 out of 10 people with Alzheimer’s live at home, lost productivity of caregivers is estimated to cost American businesses $26 billion a year plus $7 billion annually related to costs for health and long-term care (The Alzheimer’s Association, 1999). Other estimates put the cost of informal caregiving at $18 billion. In a project of 7, 443 of elders seventy and over taken from a national representative survey, the cost of informal care for mild dementia at $3,630 per person with double the cost for moderate dementia relatives and almost five times the cost for severe dementia (Langa, Chernew, Kabeto, Herzog, Ofstedal, Willis, Wallace, Much, Straus & Fendrick, 2001). It is not surprising that the public is starting to ask for help with this complex issue.
Previous research sought to identify predictors of placement decisions by family caregivers with dementia (Colerick & George, 1986) when care options were few and rational mental models of decision making were thought to be superior to the human mind. At the turn of the 21st century, however, the healthcare environment offers multiple models of care for mentally impaired patients (Abraham, Onega, Chalifoux & Maies, 1994). Decision making needs to be informed by the context of continuity of care, which now ranges from home and home-like environments to part time respite or adult day care to long term care services in nursing homes. Indeed, “patients and families are often surprised if not shocked about the actual services they may receive from various community-based or institutionalized services” (Abraham, Onega, Chalifoux & Maies, 1994, p.165).
In addition to the increasing complexity of choices, rational mental models of decision-making are in question and giving way to a more naturalistic project of how real world decisions are being made (Sloan, 1996). Rational standards, in which it is assumed people merely choose among options, do not take into consideration most contextual factors that impact on decision-making in real-world situations (Beach & Lipshitz, 1993; Cohen, 1993). There is a stark contrast between the assumptions of rational decision-making and naturalistic decision-making. In the naturalistic decision making paradigm, problems are seen as ill structured rather than artificial and well structured. Solutions to these problems are made in uncertain, dynamic environments rather than static, simulated situations. Goals are shifting, ill defined or competing rather than clear and stable. There are action/feedback loops to decision-making process not one-shot decisions. Time stress is a factor and stakes are high instead of the presumed luxury of leisurely deliberation and absence of true consequences for the decision-maker (Orasanu & Connolly, 1993; Zsambok, 1997).
Research on the experience of making care decisions for mentally impaired parents needs to take into account the way decisions are made in the real world and the numerous opportunities for care assistance that are available today. The majority of middle aged, and even young-old Americans, will be faced with making decisions about care for a mentally impaired parent at a time in life when they are dealing with their own transitional issues, as well as those of the generations before and after them. Given the resulting emotional and financial cost, it would be wise to develop health policy about mentally impaired elder citizens and their offspring based on an understanding of the experience of making decisions about the care of a mentally impaired parent. Understanding what these care decisions mean to the increasing number of persons who must make care decisions for mentally impaired parents would lay the foundation for addressing issues in getting adequate assistance for these families. It would also help to provide a framework for policy decisions about the fragmented care system for the mentally impaired elderly, and decrease the cost to society in lost productivity.
Clearly, the experience of making these decisions needs to be reexamined. Since the definition of naturalistic decision-making is “the way people use their experience to make decisions in the field setting” (Zsambok, 1997), it is incumbent upon the researcher to go into the field. Qualitative methodologies, which involve fieldwork can help build knowledge of the enormously complex and profound issue of making care decisions for mentally impaired family members.
Design of the project
Part of the process in analyzing data during a qualitative project is the use of field notes. I have to admit that the process of recording field notes after each visit was a tiresome one for me. I choose to incorporate my thoughts and feelings about the phenomenon at hand, the relationships with my respondents, and the data, in the form of tape recorded field notes immediately after each visit, which were later transcribed.
I have never considered myself disciplined enough to be a consistent and in-depth journaler but do consider myself a very reflective person. I guess what happens to me is once I start to put down thoughts and feelings into a very personal form, I don’t know when or if I can stop. I also wanted to keep some of my personal issues private and did not initially understand who might be reading these notes. In addition, the interviews were so intense and so moving that I thought I would never forget one word, one thought, one emotion, or one observation that I had experienced before, during and after the encounter with each respondent. Well I guess it easy to imagine that, indeed, I have forgotten some of my reactions. I have been impressed and surprised by how valuable reading my field notes were during this project.
When I was growing up, I was exposed to several close relatives who either had dementia or a type of mental illness where they were experienced delusions. My own grandfather experienced delusions and hallucinations when I was about 11 and was hospitalized in a mental institution for some time. I do remember some of his erratic behavior, he stayed right next door to our house, which enabled us to visit him anytime, so I had experienced being around a relative with mental conditions. I was surprised to learn that many of the respondents who had taken a mentally impaired parent into their home stated that they did not feel particularly close or even liked their parent while growing up or in subsequent adulthood. On the other hand, many family that their parents had had hard times during their lifetimes and wanted to make this part of their lives easier. Indeed, many family the parent had become part of the nuclear family and took them everywhere with them. I couldn’t help but wonder, however, that the parent’s dementia might make things somewhat easier for these adult children regarding painful memories.
One of the difficulties I encountered during this project was role change. I was the listener, the interpreter, and the one becoming vicariously part of their experiences. It was hard not to intrude and offer some input and advice when I family it was being solicited or challenge assumptions when needed. I was surprised and shocked about how deeply this affected me.
Another challenge was the feelings I had to deal with after each interview. It was difficult sort out at first what my feelings were versus what I had ‘empathized’ during the interview and hadn’t let go of. After many interviews I family tired, very tired and fatigued, sometimes depressed, sometimes overwhelmed and some times angry. On the other hand, some interviews energized me and where I had gone to the interview very tired after a busy day at work, I drove home feeling great until my real fatigue actually caught up with me. One helpful strategy was to have one of my committee members review some of my field notes. I learned from that feedback to pay attention to my feelings and use them to inform myself about how that particular respondent interacted with the world.
Although there were many personal issues that came up during interviews which held personal meanings for me and from which I had to distance my own reactions from the respondents, there were also professional issues which got to me. When the ‘system’, be it healthcare, political or whatever let these informants down, I took it personally. It made me very angry that in our very rich, very evolved society we do not offer supports and safety nets for those who are dealing with such difficult and challenging isse4s such as making care decisions for a mentally impaired parent. I am hoping my anger will drive me to work on legislative issues and to continue research in this area.
The five themes and nineteen categories (see Table 1) presented in this chapter emerged from sixty-seven codes rendered from the raw data. Raw data consisted of nineteen transcripts from interviews with twenty-two adult offspring who self-identified as primary decision-makers for mentally impaired parents. Findings collapsed into five main themes: Level of Contact ; Interpersonal Conflict; Personal Sharing; Providng Assistance; and Giving Gratitude. These themes suggest that, indeed, adult offspring in this project did go through a reiterative decision-making process when making care decisions for a mentally impaired parent. At various times during the course of numerous decision-making processes, adult offspring struggled to find that Level of Contact internally, as reality set in that parents were no longer able to make effective and safe care decisions. There was the need to Interpersonal Conflicty as they contemplate where they, as adult children, fit into this picture and what responsibilities they will accept while negotiating with other siblings. Other phases of the decision-making process involve: Personal Sharing as they stepped up to the plate and made and implemented decisions; inevitably having to alter course as circumstances and levels of energy changed (Providng Assistance); and Self Sufficiency where they reinforced their decisions by being thankful that their situation (or perception of their situation) was more tolerable than others in similar circumstances.
Themes and Categories
Theme I. LEVEL OF CONTACT
Category 1. Defining Condition
Category 2. Safety Concerns
Category 3. Role-Reversion
Theme II. INTERPERSONAL CONFLICT
Category 1. Conscious Choice
Category 2. Strained Family Relationships
Category 3. Sharing the Load
Category 4. Sole Responsibility
Theme III. PERSONAL SHARING
Category 1. Thread of Memory
Category 2. Guessing Needs
Category 3. Getting Information
Category 4. Finances
Category 5. Expressing Goals
Theme IV. PROVIDNG ASSISTANCE
Category 1. Caregiver Wear and Tear
Category 2. Time Constraints
Category 3. Problems with Care
Category 4. Dealing with It
Category 5. Being Assertive
Theme V. SELF SUFFICIENCY
Category 1. Comparing with Others
Category 2. Spirituality
Nineteen sub-themes or categories flowed from the five themes. Level of Contact consisted of Defining Condition, Safety Concerns, and Role-Reversion. Interpersonal Conflict involved a Conscious Choice, Strained Family Relationships, Sharing the Load and Sole Responsibility. A Thread of Memory on the part of the parent sustains adult offspring in the Personal Sharing stage of the decision-making process. In this stage, the adult offspring would be Guessing Needs of the parent, Getting Information, looking at Finances, and Expressing Goals. Caregiver Wear and Tear, Time Constraints, and Problems with Care triggered a Providng Assistance phase. Adult offspring would respond to these stressors by Dealing with It and Becoming Assertive with the parent. Finally adult offspring would use mental coping strategies to confirm their decisions and the accompanying hardships by Comparing with Others and turning to Spirituality (Self Sufficiency).
Theme I. Level of Contact
Category 1. Defining Condition
All but three of the interviews contained a category of Defining Condition of the parent. Adult offspring went through a process where they had to let go of their past preconceptions of parents’ capabilities and put their own words to the startling fact that the parent needed help with care decision making. Sometimes this became much clearer after the parent was in the household a number of years. One respondent who had taken his mother in before the onset of dementia was able to describe her condition after several years of living with her.
She used to get on the bus and run around and all that stuff. When she took that fall she developed this what I call this old person’s syndrome. She became so deathly afraid of falling again that her movements became choppier and choppier and tighter and tighter and the tighter they got the more prone she was to kind of losing her balance a little bit and then she would get scared more. She has physically gone down hill a lot since then. Mentally, well mentally she’s gone down a lot too. Dementia, as I understand, is about a ten-year disease and she is probably three to four years into it. She probably had some symptoms of dementia four years ago, but it has gotten significantly worse since then. I think it has been four years.
Although this respondent was able to clearly acknowledge symptoms of dementia, he still had difficulty accurately defining which symptoms were pertinent to the dementia and to the type of dementia involved.
I said well my mother doesn’t have Alzheimer’s, my mother has dementia. She said oh it is the same thing. I said well no it’s not, it is a significantly different thing. Alzheimer’s is a variation of dementia, dementia is a much broader category. If my mother has Alzheimer’s it wouldn’t be safe to leave her alone because Alzheimer’s, as I understand it, is a spatial disorientation to where they can feel they are not where they need to be and they need to go where they want to go. Now they may be right there, but they don’t feel it and so they go. My mother doesn’t have Alzheimer’s. She plants, she is right where she wants to be and she knows it. But she does have dementia, that mental sense of connection to what just happened. And the gal said well we treat them both the same. Well how can you do that, they are both two separate issues and for one you should do this and for the other you should do that. It’s frustrating.
This adult son as he was trying to define the condition to himself, limited his conception to physical components of Alzheimer’s however inaccurately. How he defined his mother’s condition to himself influenced what decisions he made and implemented in the Personal Sharing stage. Indeed, he had recently undergone an investigation by the Department of Aging (from which he was cleared of all charges) for leaving his mother alone and for cleanliness issues.
Another respondent described how she was able to put words to the deteriorating condition of her mother. This respondent was a registered nurse with her master’s degree and chose to define the condition through objective tests and outside opinions.
No, she was not. She was totally independent and totally well until about the age of 82. So, that is getting to be close to five years now, she is 86. Then she began to get lost driving and not to be able to do what you and I would do if we were lost to stop and find out where we were, draw a map and follow it home, she couldn’t do it anymore. At that point I took her to…I had a wonderful physician who was a geriatric specialist and she got us in touch with some psychological testing services and we went through a battery of those and came up with the fact that what she should for her level of functioning prior to that date, she was losing an awful lot of executive ability. You probably know better than I exactly what that encompassed. So that is the point at which somebody had said to me she truly has some dementia developing, it is not just normal
forgetfulness, it is dementia. Then I began to intervene with things like finances and make sure that she got to doctors. You know, just gradually taking on more and more responsibility.
Note how this daughter accurately describes and defines her mother’s condition, relying on her own observations and objective tests, a method of assessment which she probably is familiar with through her professional nursing career. Once the diagnosis was established, she got on with Personal Sharing phase by examining finances and making and keeping doctor’s appointments. This was an only child, born of parents who were also only children of which only the mother was living. These circumstances necessitated that the daughter did not have the luxury of dealing with siblings and determining her place in all of these decisions for her mentally impaired mother.
Another adult daughter defined her mother’s condition by the things she was still able to observe and how she functioned.
Yeah. She is so observant. On the way home from [the daycare facility] the other day she said you know I am just intrigued by the cloud formations. She said I look up and I see all these configurations in the cloud. Coming down 29 she said have you ever thought about the laying of asphalt on that road, that is such a steep hill. How did they lay all that asphalt without it trickling down hill? So I mean she’s not out of it. And every Sunday morning I don’t know what triggers it she wakes up at six o’clock and says is it time to go to mass. The other mornings of the week she will say what day is today. But somehow Sunday she knows it is Sunday. She will say now what time is it. Be sure to fast long enough to go to communion. She is a big help to me with her hands. She folds all the laundry. She cleans up all the plates and Sunday afternoon she took the fern and gave it a haircut all afternoon, it took quite a while to do it. She cuts up the salad, she makes fruit salads, she will wash vegetables, she will wash beans, anything she can do with her hands.
Focusing on the positive might impact on this respondent’s ability to acknowledge continuous regression and might negatively influence the Personal Sharing phase when the inevitable physical decline begins and nursing home care must be considered.
I mean if the time comes when she can no longer go to the Center or she is so feeble I would then have to make the choices to whether I was going to have somebody come in during the day to care for her and then I would be the caregiver until I got home from school until the next morning or put her in assisted living. I doubt that she will ever need nursing care, although one never knows. I mean nursing home care. She would be more likely to go into an assisted living. And as to where I would take her I don’t know.
Two other respondents defined their mother’s and mother’s-in-law mental impairment by attributing it to being taken advantage of by a preacher.
Respondent: I truly believe that the religious aspect of this deteriorating her rather than helped her. I’ve had extensive kinds of confrontations on her about she and God. This man always prayed with her and just a week ago did she say I believe in God. I think this man was her avenue and had her believing she was an avenue to God.
Wife: And she’s been in church all of her life and taught Sunday school.
Respondent: I think it was a brainwash. I think this lady right now could still be playing the piano and doing everything she wanted to do if she hadn’t of gotten too involved with him.
Interviewer: So you think some of her thinking difficulties have to do with being involved with the church.
Respondent: I know so. Three years, two years or more before this happened she always raised money for the preacher. She was the league chairman. She was going to give him this appreciation and I told her I was not taking her back there for her to take a bunch of money a thousand dollars or so out of the bank to give to some preacher. She said if you don’t take me I’ll catch the bus. It took her fourteen hours to go to West Virginia. It almost killed her.
They continued talking about their journey to define in their own words what was happening to their parent despite what others were telling them.
Wife: Then the people told us that she had gotten to the point where she was not bathing, had weird stuff on her hands, dirty, nasty stinking and he was steadily draining her and the neighbors and the church people had been telling us this and of course we didn’t believe it not as strong a woman as momma was. But, they said she was even begging in the church for money for him and she would call us here and people kept sending bank statements to them that checks were bouncing. And he found out because he asked about a savings account and she said what savings account and we know that his father left her plenty of money. She doesn’t have a dime except for money that she gets ……
Respondent: And we have a beautiful house like this in West Virginia and we have borrowed on it. We go there and live four weeks out of the year. Two months out of the year we are there, we just came back. But, yeah I really think that this man really deteriorated her mind. Any time something would go wrong for him…I hadn’t paid attention to it. She would tell Wife that she called the preacher and he prayed with her and things were okay. I think that can happen to an old person and its called brainwash. Brainwash is a strange thing.
The respondents kept coming back to the fact that their mother was taken advantage of by a preacher but incorrectly attribute this as a cause of her mental impairment rather than a consequence of it. On the other hand, they were able to seek out a doctor’s opinion and had some understanding of dementia.
And I started questioning him about her and he said why don’t I just get the chart and discuss it with you. I said because I am going to be taking her away from here and she can not get over here to see you properly. She has to pay somebody for everything that they do. So, he started out with dementia and I said what is dementia. I said is that Alzheimer’s what is it. He said a form of it. He said she will do well for a good while and I can’t tell you how long, but he said she will start deteriorating and this will take over and it will appear to be almost like Alzheimer’s. He said she always has some deficiencies here in the spine at the base and that is going to be crippling and she would be wheelchair bound. He said other than that there was some enlargement of the heart which is normal for this age, 95 or 96. That is how we found out. There was always no problem everything is all right. Because we never went to see her business because she took care of everything. But when we found it out that is when we made the decision. She had always said she would come and live in her room at the right time and the room was fixed, it was all ready …Of course she has been unhappy many, many times in the beginning when we brought her here. She always wanted to send money back to the preachers wife, which she used to always buy her clothes all the time and making commitment always for that group. I guess people like who they like. I think they took advantage of her, I know so.
This man was also an only child and it is evident that he moved into the Personal Sharing phase with the support of his wife while short-circuiting the Interpersonal Conflict stage due to his clear place in the family and no siblings with whom to negotiate.
Category 2. Safety Concerns
As adult children moved through the Level of Contact phase, they inevitably encountered issues about the safety of the parent’s behavior. They were often still unsure about whether these safety concerns were real since many times at the beginning of the course of the mental impairment, they were being told of these behaviors by others and not directly observing them for themselves. Thus presented quite a dilemma. The adult offspring were still struggling with defining the parents’ condition and not believing that the parent they knew could no longer be counted on to behave in an appropriate and safe manner. Looking back on being told of his mother’s erratic behavior about finances and being drained of her life savings by a local preacher, one adult son remarked:
Well it really was at a point that something I should have addressed ten years ago when I was told by distance relatives and friends and classmates there in the town that he was doing this. I just came to grips to where I just didn’t believe it and you all told me and I didn’t do anything about it. You all were right. I should have called this guy on the carpet way back. Hey man what are you doing. As I tell Wife I’m not sure that would have been right either because then it is hearsay.
This respondent was much more comfortable intervening in the situation once he had concrete evidence of the unsafe manner in which his mother was handling her finances and ability to live on her income.
What happens is I have fact. I have the canceled checks. I know things that he’s done. I have people that have seen him take her to the stores where she can cash checks and wait on the money, all of that.
Safety Concerns whether they were about finances, getting lost in familiar surroundings, leaving appliances on such as stoves, falling or being unable to perform routine activities of daily living particularly eating regularly were effective at helping the adult offspring to move through the Level of Contact phase only when they were real to the adult son or daughter. The implications of seeing a formerly competent parent falter at taking care of themselves in an appropriate and safe manner seemed to be almost impossible until unsafe behaviors were personally observed. One adult daughter put it this way:
Um, so it went on like that and then, what really brought it to a head was one morning I knew she needed milk. She could get her cereal but for some reason that was the thin that she really wanted so that’s what she did, um, and I thought, well I’ll drop the milk by and she’ll have milk for her cereal and then I’ll come by at lunchtime and see, you know, see what’s going on. So ordinarily, my mother slept very well and slept a little bit later in the morning, so I thought, well, you know, I let myself in and put the milk in the refrigerator and then thought, well, I’ll just take a little peek, maybe she’s awake, and I went around the corner and my mother, yeah she was awake but she was also on the floor surrounded by her covers, didn’t know how she’d gotten there, didn’t know who she was, didn’t know who I was at first, but she was so upset and you know, didn’t have any idea how long she’d been there, so I got her back up on the bed. She didn’t hurt anything, cause the bed was low and she just sort of slipped off of it. I think she used to take a medication. Sometimes it would make her a little sleepy, you know and she used to get up in the middle of the night to go to the bathroom and I think that maybe when she went back she may have missed the bed for some reason. I don’t know how she did it, but she was OK, so I called my husband, I called my job and I called the doctor…from then on it just seemed that things just went very quickly…
Another adult daughter talked about the time she realized that it was no longer safe for her mother to live alone.
What happened one day, my mother stayed with them, they had a house and what happened was my mom she went to the dentist and they gave her some anesthesia and I think it just made her more confused and she was lost, we couldn’t find her. She had left the house about ten o’clock that morning and everybody was wondering where is mother, where is mother and we couldn’t find her. So I think around like ten o’clock or something like that we called the police and eventually we found her. She was over in the old neighborhood where she used to live prior to staying with them. So, I just took her at my house and I kept her like six months because I
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