Experiences of Adult Offspring Making Care Decisions
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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 was the only one not working at the time so I kept her like six months and I decided to go back to school so I needed to put her in daycare so that is when we decided to do it instead of putting her in a place to live.
Category 3. Role-Reversion
While safety concerns seemed to be a driving force in helping the adult offspring Find a Voice, the perception of traditional roles of parents and children often was a restraining force that prevented them from Finding their Voice. An adult son, who could state that his mother had dementia but could not define it accurately was still being influenced by this Role-Reversion:
I guess we all have, well I have sort of this stereotypical thought of my relationship to other things in my life. I don't think I had ever in that paradigm of life that I have set up thought that I would be checking my mother's panties to see if they were clean or dirty.... To do it to my mother is not something I ever thought I was going to do to....I look at my mother and she is regressing in age. I can remember, as a kid, having my mother yelling at me for not finishing cleaning something and now I look at her I go should I yell at her for not finishing cleaning something, well shit she didn't even start cleaning it, okay but she is about four years old now, she is not the mother I knew, she is my child. And she is a very young child and that is not something that my mind had set up for 50 some years now as a paradigm that I am going to work with. It messes with your mind. It changes the roles that you thought you were going to be in... it's back to when you are a six-year-old. Don't move let me clean up. But, to my six year old there is sort of a natural relationship between parent and child. To my mother I just really never thought about it. I still had to clean up diarrhea. It just all messes with your mind.
Interestingly, this was the same adult son who was reported to the Department of Aging for sending his mother to the adult daycare in an unkempt and dirty condition. Often, it was the daughter or son in law who was able to clearly see the change in roles. A daughter-in-law was able to express the difference between the way she and her husband viewed his mother. The adult son agreed with this observation:
He doesn't see her like I see her. He still sees her as his mother. I see her as a child. That is how I feel she is now.
Once, however, that the adult offspring did accept the change in roles, they could often appreciate the situation's ironies. One respondent made a comparison between her mentally impaired mother and her two-year-old nephew:
What's funny is to watch her with him because it is like having two, two- year-olds. They walk the same, actually he walks better, but they do things very similar, it is very amusing. I sit there and I look at them and think God, except he's learning and she is not.
Note the underlying feeling of this respondent as she is amused but cognizant of the fact that her mother is reverting to an earlier age while her nephew continues to grow.
Category 4. Feelings
As with the example above, many feelings were either directly or indirectly expressed as adult offspring worked through this stage of the decision-making process. One respondent used a general term to describe these feelings:
Its difficult making decisions about your parents. I have two teenage boys at the same time so I am a little more accustomed to making decisions about children than having to make decisions for parents. It's emotionally different then what you normally have to do.
Another respondent was able to describe it as both difficult and uncomfortable:
It's I guess it's difficult watching...you know you tend to think of your parents as someone who has always taken care of you and you think they will always be there for you. Now it's sort of the roles have reversed. That's not always comfortable.
One respondent, an only child, who did move in with her mother to care for her, was able to express specific feelings. This adult daughter seemed to be trapped in her anger and loss despite professional counseling.
I don't want to have somebody dependent on me. I don't want it. It is very unsettling to me and there are some feelings of entrapment and anger and loss. My mother was a wonderful conversationalist. We could always talk about something. She was an avid reader in history and particularly history and English and always interested in words. She doesn't read any more. She thinks she reads, but she doesn't even realize that she actually never really does read. So, it is very hard for me to carry on a conversation with her anymore. I can't find anything to talk about except do you like the tablecloth, isn't it a pretty color, you know.
So strong were her feelings that she invoked in the interviewer a desire to rescue her from the dilemma and the interviewer made a strong recommendation that the adult daughter attend the next support group meeting as her counselor had recommended. Complicating this situation were feelings from a difficult divorce that seemed to be replayed in this situation.
Theme II. Interpersonal Conflict
Category 1. Conscious Choice
Respondents spoke of consciously choosing to a major contributor to the caregiving and making care decisions for mentally impaired parents. The choice was one made with limited options and wishes that things could be different. One respondent expressed this by distinguishing between the choice as being embraced not as obligation.
If I could choose my own life at this point, I've spent a quarter of a century raising kids. I don't particularly want to spend the next ten years lowering my mother. It isn't my choice in life; it is something that I have chosen to do. If I had my druthers she would not be mentally impaired, she would be out living on her own like many people in their 80's and 90's do and I wouldn't have to deal with these issues. But, I do, and it is what I want to do. I do it because I want to, not because I feel I have to.
Another respondent also made it very clear that the choice was a conscious one:
It's an inconvenience, but I'm not going to complain outwardly about it. It is more of an inner thing that you just deal with because I made the choice and I have to live with consequences.
But another respondent while acknowledging that the choice was a conscious one attributed it partly to obligation:
You know that is my mother and that is more important than anything else... So I feel like I owe that to her. That is how I feel about it. The easy thing is to put her in a nursing home. That is the easiest thing to do. I don't think she deserves that. I didn't think she was that bad off. I know she has Alzheimer's, but if you met her you might not even know she has it.
Taking ownership of the decisions to be involved in the mentally impaired parent's life helped these adult offspring to move into negotiations with other family members about where their fidelities lay and who was willing to share the load.
Category 2. Strained Family Relationships
Many respondents talked about how the role of main care decision-maker for their mentally impaired parents fell to them. One adult son talked about the lack of contact even though siblings lived nearby.
Interviewer: Do your brother and sisters live nearby?
Respondent: Yeah, but they don't really have any contact. I think they never had....it was kind of not a good relationship to begin with. My mother was deceased about seven or eight years ago and my father was always very argumentative with his children...So they have kind of just dropped out completely. They may see him once a year, but I almost resent that to be cordial and all around Christmas for one day and not make any contact for the rest of the year. That is the way that they want it so that is the way that it is. I guess that happens.
Another respondent acknowledged that this care decision-maker role was inevitably her role in the family:
This is the house I grew up in. She refused to be moved out of it so we moved in. I'm one of seven children and the responsibility fell on me as I knew it always would. The family dynamics, I'm the family fixer, I always was. I knew this would be my job. I have a sister that lives right across the field there, doesn't call my mother, doesn't see my mother unless it is a family function somewhere else.
Another talked about the resentment from a developmentally disabled sister when she moved into the house to help care and make decisions for her mentally impaired mother:
Her thing to me is that she resents me really a lot and I moved in here, I built on and moved in here.
Category 3. Sharing the Load
Some respondents talked about sharing the load of decision-making and care taking with siblings. Two were able to express that, indeed, they had received help from siblings, although that help was limited in scope.
Well I didn't want to make decisions all by myself and she has other children and it affects her life as a whole because I see just this one side because I'm here. I don't see around the corner sometimes and somebody else can say well look at this. My sister kept pushing me for a cleaning lady after I was here for about three months. She kept saying get a cleaning lady. It took me a year and half to get a cleaning lady. I finally got one, but therapy helped.
Interviewer: Did you make that decision by yourself or in collaboration with siblings?
Respondent: With siblings. I have a brother and sister who live in Philadelphia. Both were just in situations where they could not have done as much as I was doing. My sister is a PHD student and really could not interrupt her schedule right then to do that. My brother worked at night and so he wasn't able to do it. So the decision, we talked about it and I said well fine she can go home with us. And we could arrange to do it and because again her sister lives in Baltimore. So that was a real plus.
Most of the other respondents, however, did not consult with siblings about care decisions for the mentally impaired parent. This happened for several reasons. If the respondent was an only adult child, or if a sibling was deemed unable to handle the responsibility, consultation was with the spouse:
Interviewer: Who made the decision to bring your mom here...[and place her in daycare?] ...
Respondent: Me and my wife. My wife is really anything that I have done it's a co-kind of thing. She is even on the power of attorney, she is on the checks, she's on everything, the way we've done it. It was our only resort really. It was either that or she was going to have to go to a nursing home because the constant care it really confined us to where we had no time to do anything but take care of her. And for anybody I would suggest, if it's not two people in the household this kind of situation I would not advocate it particularly if you are a man.
Respondents noted that siblings were uninvolved. There were various strategies for dealing with this situation. Some respondents eventually decided to directly ask for help:
I was here almost a year before I got any help at all from any of my brothers or sisters. Then I had to initiate the contact and make phone calls and I got my youngest brother to take my mother every Wednesday.
Other respondents waited for an offer of help from siblings, which never materialized.
And the family thing doesn't help any. It would be nice if your brothers would say well we'll take him for this weekend or every couple of months or something like that, but there is no support there. Just deal with it.
Category 4. Sole Responsibility:
What it really came down to for the adult offspring who chose to accept the role of care decision-maker for the mentally impaired parent was through a labyrinth of strained family relationships and often failed negotiations to share the load with other siblings, the role involved Sole Responsibility for much, if not all, of the time.
So now all the responsibility is kind of on me. I have two brothers and an older sister and I take care of his care pretty much.
Another respondent who had Sole Responsibility as a result of being an only child discussed how this impacted on her own health:
I think how wonderful it would be to come home and have a cup of tea and just curl up. The worst is in the wintertime when I get the flu and I have a temperature and I'm coughing or if I have intestinal flu and I have diarrhea. It is very very difficult to care for her because no matter how sick you are you have to get meals, you have to get her to bed, you have to get her up the next morning to go to the center. It is not easy. That is probably the most difficult of all the caregiving tasks I have.
Category Five: Feelings
During this phase of the decision-making process, where respondents were actively engaged in figuring out their role in this unexpected situation where a parent could no longer make effective and safe decisions for themselves, many feelings were evoked. The adult offspring who ended up Interpersonal Conflict went through a conscious choice, strained family relationships, negotiations about sharing the load, and, ultimately to the realization that the Sole Responsibility essentially landed on their own shoulders. This could quickly become a stressful burden.
Managing his affairs is as stressful as the other stuff because he wasn't a very good bookkeeper and I'm not a great one. Then trying to make those decisions I guess it is kind of a psychological thing. You are not prepared to be a caregiver for your parent so there is a certain psychological adjustment to that. I guess some of the stress it is almost like having a child in reverse. Whereas a child becomes more independent, the parent becomes more dependent and their condition actually goes the other way. So, it seems like no relief sometimes.
One respondent talked about how strategies learned in therapy helped her to deal with the stress and strain of dealing with her mother. She was able to assertively re-negotiate with siblings about care responsibilities:
I went into therapy last July because I just could not handle the stress and just the every day emotional strain of dealing with mom and dealing with the outside world. Because of therapy I called one of my other brothers and I said guess what Sunday's is now yours. His response was I am a busy person. And I said excuse me I have my mother seven days a week 24 hours a day, nobody is busier than I am plus I work. So, I said nobody is busier than I am. So he doesn't even take her every Sunday. The first Sunday he didn't show up and my husband was like forget it. My husband said oh no. I called him up and said where are you. He said oh I forgot. I said wasn't that convenient. I said you better be here next Sunday so I started calling him the Friday and Saturday before for about three months just to make sure he would be here. Now he comes every Sunday and now he is going out of town the next two Sundays and we were at his daughter's graduation last Sunday and we took my mother and we left. We stayed a while and we said goodbye. He was amazed that I wasn't there to take her home. I had told his daughter Sunday is your day, we're leaving grandma you bring her home. He had my younger brother bring her home. I said to him what have you done for your next two weeks when you are not going to be here? He said I didn't think about it. I said what are you going to do about it? And he looked and me and he didn't say anything. I looked at my husband and said see this is the response I get from my brothers. So he said I'll take him on Saturday and he did ask my niece to take her the following Sunday which I was surprised because I asked my niece too, but I didn't know that he had asked her. So we get Sundays off and mostly I don't work Sundays.
Theme III. Personal Sharing
Category 1. Thread of Memory
One factor that seemed very important to the identified care decision-maker of the mentally impaired parent was when the parent seemed to have a Thread of Memorywhich was connected either to them or other immediate family members. This reinforced the decision to take on such a difficult role and forge ahead in the Personal Sharingstage to make plans and stand in the parent's stead in a world the parent no longer understood.
I do believe that she is better off here than in a home. She doesn't hear very well. I've seen her at [daycare] and she doesn't interact with a whole bunch of anything. I've talked to her about how her day went when she goes to [daycare] and for what conversation we can have, she doesn't remember it.. In fact, many times she doesn't remember that she even went, let alone what she did there. And this is 15 minutes, 20 minutes after she got dropped off. I point that out only because the things that she wants to remember, she may not do well, but she remembers. Like my son moves back in the house last night, he is a college student, so school is over and he is shutting down the apartment and he is back in. My mother remembers that, but she doesn't remember all of the details associated with it. What she will do is she will ask me as Eric moved back in the house again. I might get asked that ten times. But that tells me she has a thread of memory there some place, there is something connected. It just isn't quite fully connected.
One respondent who came home to be the main decision-maker and caretaker late in the course of her mother's dementia expressed regret that this Thread of Memory did not extend to her family but noted the importance of the connection with her sister's family.
She knows her bedroom and that is her territory and no one goes in there. She keeps the door closed. But, other than that, she doesn't really know that it is her house. That kind of thing it is really sad. She doesn't know the girls are her grandchildren. She knows our association she knows the girls are mine and my husband but she doesn't know. Twice since I've been here she has referred to me as her daughter. I walked into the senior center the other day to pick her up and there's my daughter that was the second time since I've been herein August and it's twice that she has called me by name. But, she knows my sister by name and my brother by name because they've always been here. So, of course, it's said, but that was my choice to move and do my thing and by the time I came home it was too late to make that connection.
Category 2. Guessing Needs
An important part of Personal Sharing phase of the decision-making process was Guessing Needs of the parent who could no longer express precise wants and needs. The adult offspring tried to determine the parent's wishes and needs based on the parent-child relationship that had evolved throughout their lifetime. Thus,if the adult son or daughter perceived a thread of memory from the parent, it seemed to be enough of a connection to base current needs on past perceptions. One daughter based her decision to keep her mother at home on how she perceived her mother's value system about family even though this daughter had a very difficult time with this, noting that other friends had somehow ‘gotten out of it”
K: So, you've seen somebody be put in a nursing home and die?
M: Oh that's not...
K: That is not what is keeping you from....
M: That is not what is keeping me, it is her, how vocal she has been all these years about how families take care of the older generation.
K: It sounds like you take that to heart. Even though she doesn't see it as her home anymore or sometimes doesn't recognize it.
M: But still she knows these are her things and she loves her things. She has boxes of things. Many boxes of things.
This same daughter limited her time away due to her perception that her mother family abandoned when the daughter was not home for a period of time. It is unclear whether this sense of abandonment really belonged to the mother or was projected by the daughter.
M: Yes, I think it would and help her feel not abandoned.
K: What makes you think your mother feels abandoned at times...
M: She doesn't want me gone. She tells me to go, but she doesn't want me to go.
K: How does she tell you she doesn't want you to go?
M: Oh I miss you so much and when will you be back. When I call her on the phone oh it seems like so long since you've been way. I'm all right, but I can't wait to see you. I just know my mother.
On the other hand one respondent noted that he did not know his mother intimately enough to correctly guess her needs.
Am I really doing the best for her? I don't know what the answer to that is. I can't get inside her head to figure out what is the best for her. I could, if I were a significant other to you and I had been for years and I really knew you well and you knew me well, suggest what might be the best for us or you if you weren't capable of doing that. But that is because you are connected and you are here. She's not, she is someplace else and I don't know, I just guess.
Category 3. Getting Information
As the adult child was connecting with the mentally impaired parent through a Thread of Memory and the perceived ability to Guess Needs of the parent, it set the stage for the adult decision-maker to go about Getting Information. Many respondents obtained information from neighbors, acquaintances and, sometimes, health professionals.
Interviewer: You said you had gotten some conflicting information about day care, how did you sort that out?
Respondent: all you have to do is ask people around. Beauty parlor, church, people that....we are catholic and we always going and associating with other people and went to a Baptist church down here, all you have to do is ask. The lady at the clinic we go to had a been a trained nurse at one of them, the one I'm talking about, she said don't go there. She said some of the people in there are absolutely nothing. Don't bother him, leave him alone, he ain't going to do nothing no way and she said they had a bad attitude so I knew don't go there.
Other respondents turned to the Department of Aging for information about care for their mentally impaired parents.
I knew that respite care existed and I also knew it wasn't easy to find someone available. Originally, about two years ago, I talked to the senior program director and she had given me a list. I had to get a new list out of the Office for the Aging, which fortunately is right over here within a couple of miles. Went through it and found the ones that handled her level and then called the closest one. It was odd because my mother is 84 and the woman who is running it is 84 and the lady that she shares a room with when she is over there is 84. It is very convenient. They all have the same references. Same years of experience.
Category 4. Finances
Inevitably, respondents cited Finances as an important part of the picture when they were making choices about mentally impaired parents care. This was an important part of the Personal Sharing phase of decision-making.
I have very few options. If I were to put her in assisted living I would have about enough for her resources to keep her in assisted living for about a year. But, if she lived longer than that, and she is very healthy, you know she takes no medication except Prozac, then we would be in big trouble. So, I don't have the option with putting her in assisted living.
The above respondent was able to place her mother in daycare 5 days per week but other respondents had difficulty affording an entire week of daycare.
So she goes on Thursday because [daycare] is expensive for us. We use her pension and her social security to pay for it. I mean really, I could do it five days a week but there are others things that I need to take care of for her. So to do [daycare] five days a week was really going to be expensive. Her sister said well don't do five days a week, bring her here. She can come spend the weekends with me.
Interviewer: So you do the three days?
Respondent: Right we do the three days to give her some structure.
Category 5. Expressing Goals
As respondents moved through the phase of Personal Sharing, they moved to Expressing Goals for the mentally impaired parents based on a Thread of Memory, Guessing Needs, Getting Information and an evaluation of Finances.Most of these goals included mental stimulation and adequate nutrition for the parent.
She goes every day and the van comes in the morning and picks her up and they have breakfast and lunch and a snack and they have activities. She is severely hearing impaired. She has become progressively hearing impaired so her interaction center is visual and tactile, but they do try to put her closest to the person who is doing the activity and also closest to the TV when they are seeing a program or a movie. But, I think that going there every day has helped her mental processes.
Another respondent was able to express goals for her parent hoping the parent would realize and like the daycare but could acknowledge that this was not happening.
I went around to look at the day care centers and decided that it would be a reasonable option. She would get a good meal, she would have social interaction, she would have some physical activity and I thought she might eventually like, but I don't think it is ever going to happen.
Category Six: Feelings
Feelings during the Personal Sharing stage included guilt as the adult decision-maker struggled with the fact that perhaps their decisions weren't the most ideal.
I feel so guilty on the days when I am home if I don't take her somewhere and do something with her. And that is not working out real well either. I really think I need to take her five days a week.
At other times, dealing with the care system and the costs of healthcare provoked feelings of anger.
They look at how much income you have and how much they can subsidize. It was kind of interesting when I told them here that I was going to pull him out they automatically said well we'll drop the price, which I thought was kind of strange. If they were able to drop the price why did they raise it in the beginning? Do they say the same thing to someone who doesn't complain? Are they willing to drop the price so it's kind of like if you don't complain they will see how far they can push it and then when you are ready to leave we will try to accommodate you somewhat, whereas rather than raise it in the first place. I don't know what their census is here whether it has fallen ...or what. I didn't appreciate that. I appreciated them maybe dropping the price, but I didn't like the way they went about doing it.
Theme IV. Providng Assistance
Category 1. Caregiver Wear and Tear
It is well documented that caregiving affects the health of the caregiver. Many respondents noted this Caregiver Wear and Tear, which eventually became one of the stimuli for the Providng Assistance stage of decision-making. One respondent noted how painful it was to move her mother, a situation that had being going on all spring:
This has all been this spring. Sometimes I am in a lot of pain and I still have to move mother and sometimes it hurts me to move her. Although the therapist was teaching me, in the few sessions I had, how to move her so I didn't injure myself anymore. But I didn't get a chance to go to many so now I am dealing with the knee which is still...the shingles are getting better. I won't say I'm without pain but I am no longer taking the pain medication. I pray a lot.
Another respondent noted her full day and how wearing it was to care for husband, cats, mother, and work full time.
...lots of things don't get done. Mostly the sweeping the floor and dusting doesn't get done. I do things I have to do. I've never broken my husband from wanting to do the dishes when I am fixing supper. It is such a great time to do the dishes. He sees it as being in the kitchen with me. I feed the cats, I do the laundry and that is about it, then I try to get her to bed. Which is a project, it takes two hours to get her to bed. One hour of her asking the same three or four questions over and over. It's wearing and I'm tired to start with and I have a possibility of a job that will pay a lot more which would be great because I can get more into social security and I fully intend to double dip. It will give us a little more to set aside because there is going to be that transformation between when her money runs out and when Medicaid, Medicare will start paying for that.
Note that both of these respondents were thinking ahead or had already made corrections in their decision-making process, one by thinking about a new job that would permit her to bring in more income, thus ensuring more help with her mother. The other respondent had already instituted a change by attending physical therapy sessions.
Category 2. Time Constraints
Time Constraints were another problem, which posed huge concerns for the adult offspring decision-maker. Sometimes this impacted on decisions about care, especially when a transportation issue was involved.
I think it would be very difficult to drop her off and then go to school and that is a big plate issue in the morning. The other center will not allow their people to be on a bus more than 20 minutes and so they wouldn't pick up mom because she would have been on the bus more than 20 minutes or someone else would have been on the bus more than 20 minutes. But [the daycare I chose] doesn't seem to be concerned about that and mother doesn't seem to care how long she is on the bus. She just looks around and enjoys the scenery.
Other respondents cited the lack of time they had to attend support groups:
Interviewer: Have you been able to go to any support groups or education groups?
W2: Most of the time you'll be so tired that you don't really feel like going to support groups.
Interviewer: Right you don't want to go and talk about it.
W1: Haven't had time really and the different things that we had planned to go to we thought it would be better if all of went instead of probably one or two. There is no way all of us could go.
Time Constraints acted as both a driving and restraining force in the Providng Assistancestage of decision-making. Many respondents took this factor into consideration when choosing or changing a daycare placement. On the other hand, many also were stymied by Time Constraints when considering Providng Assistance with outlets like support groups.
Category 3. Problems with Care
Problems with Care of the mentally impaired parent also precipitated a Providng Assistance stage of decision-making. Problems with Care occurred both in respite and daycare settings. Many respondents noted that it was very difficult to find an overnight bed for respite care. When one was attained often adult offspring had to deal with sudden cancellations on the part of the facility or with substandard care.
Well, the first time she went to respite care was when I went to conference in Phoenix and when I went back to pick her up after four days she was in bed without any nightie. They had put her in bed without it. Her nightie was packed. All her nightie's were packed in the suitcase because she was supposed to come home the next morning. But, she was in the bed without any clothes and I wasn't real happy. They had also misplaced her hearing aid and it took me a week of calling every day until they finally found it in the laundry room under at table. So, but when she came back from respite care she didn't have any comments.
In another situation, the parent was returning from daycare soiled. The respondent Corrected Course in this case by being persistent about notifying the health care facility of her concerns.
She would come home and she would smell so bad. Her clothes would be piss soaked so finally I complained a couple of times abo
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