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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.

CHAPTER III

METHODS

Methods

Design of the project

Personal Reflections

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.

CHAPTER IV

RESULTS

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.

Table I

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 about it. It seemed like nothing much [was done]... but anyways what you have to do is write the CEO or the president of the company so I wrote a letter and I wrote about her coming in stinking...I complained in the letter that she was coming home messy, cause it is against the law in Maryland for people to leave a care facility soiled.

One respondent, however, was faced with the dilemma that the daycare his mother attended had a problem with his care of his parent. This too led to a Providng Assistance action.

Interestingly [the daycare facility] outside of ...turning me into Adult Protective Services, never tried to work with me. Some of the services, in fact, that [the daycare] offers in terms of cleaning, they never offered. But, they did feel comfortable turning me in. Anyway I have now pulled her out of [that daycare facility].

Category 4. Dealing with It

Adult offspring learned and implemented ways of Dealing with It, the “It” being the Caregiver Wear and Tear, Time Constraints and Problems with Care of their mentally impaired parents by Providng Assistance and taking care of themselves at times.

I like to read. I like to do gourmet cooking. I love to garden and I am just content being at home. I am not the kind of person who likes to go out and party and I don't like cocktail parties and small talk and you know thatis just now my style and it never has been so staying home doesn't bother me.

Another couple talked about how they decided to include normal parts of their routine even though they were responsible for a mentally impaired parent:

We decided we might as well have a life. We've participated in the club that is actually how met my husband. And they are basically our group of friends through that.

Often this couple would include the mentally impaired parent in their club activities but noted that this could be a problem and cancel out any benefits of Dealing with It.

Sometimes I've taken my mother with us to the twice a month thing here in the last six months. She doesn't know what is being talked about or any of that but she is there and is somewhat bored. She will take her word find things and work on that but then she will get the point that she wants to go home and I'm in the middle of a card game talking to people.

Category 5. Becoming Assertive

One of the most important and effective strategies that adult offspring learned during the Providng Assistance phase was Becoming Assertive and direct with their mentally impaired parents. This did not come easily for these adult sons and daughters but once implemented seemed to make the difference in being able to continue their role as care decision-maker.

...and you have to make up your mind to do it. The first year we just let control us. She had us crazy. I said durn we are going to end up dead and we are going to still be here trying to control and groove somebody. We had to put down our law, you are the child now, we are the adults, but you have to make up in your mind.

Adult offspring learned to cope with Being Assertive with their mentally impaired parents even when parents might not be too happy about what they were being asked to do.

So she goes to the girl's ball games and she goes to the zoo with us. Fortunately she is healthy so she can walk and she does great. Sometimes she is not happy being there and I said to my sister not too long ago I said you know I don't have a problem if she is not always happy with what we do with her because I said how many people in her position has what she has.

Category Six: Feelings

Difficult feelings were surprising rarely encountered during the Providng Assistance phase of the decision-making process. This could be due to the fact that participants were changingthings for the better and learning to Dal with It and Becoming Assertive with the parent, which often avoided potential problems in the parents' behavior. Most feelings centered around the difficulty in Being Assertive with a parent.

...I said yeah I said she thinks she is getting away from me the ogre.

Interviewer: Do you feel like an ogre sometimes?

Respondent: Yeah, sometimes I do, sometimes. I will put her down on the table and I'll say sit down and eat. She'll walk in here and she'll stand here at this chair and she will look over this table and she will move this chair a little bit you know and she will get back up and go in there. I will say what is the matter? Isn't that something you want to eat? She just looks at me ...I hate to tell you but that is what we got to eat I said if you don't eat that you are going to go hungry. Then she gets up comes in and she sits down and she eats.

Interviewer: So you have to be kind of direct with her?

Respondent: Right. You can't, if I want her to go and to get in the car I gotta take her by the arm and go right to the car open the door and tell her to get in and sit down. Cause otherwise she would be walking up the street.

Some respondents family that the ability that they had to Correct Course was getting to be more difficult as the parent's dementia progressed.

Well getting away helps. So far I have been able to get away occasionally, it is getting harder and harder. I had a young woman living in the house for a while. There is almost another apartment downstairs and she lived there and she is a real sweet person. She was able to kind of shepherded [mother] around and just watch her and make sure she was okay. I just came back from a few days away, my middle daughter had a baby and I went up to be with her. But, when I came back I really had the feeling I wasn't going to be able to do it again.

Theme V. Self Sufficiency

When participants family that their options for Providng Assistance were getting more limited and Dealing with It by usual ways of coping did not work, they often entered in the Self Sufficiency stage of decision-making. Two ways that this phase of the decision-making process was helpful to these respondents were tolook at their situations in a more positive light by Comparing with Others and to turn to their Spiritualityto cope.

Category 1. Comparing with Others

One of the most frequent strategies that respondents used to make their situations with mentally impaired parents more tolerable was Comparing with Others in similar situations. Almost always, respondents would Express Gratitude that their situations

were better than others. One respondent noted that her mother's mental condition was better than her friend's mother, who was also mentally impaired.

I don't know if my story is that compelling. Actually my story is probably easier than many...I have friends, one in particular, her mother is just phenomenally paranoid. Everything in the world was out after her. Inanimate objects were conspiring... She's [my mother] not, she doesn't think that I am out to do her evil. Everything is positive and that makes it doable. If she were [her friend's] mother I would have no qualms about putting her in a home and that wouldn't be because it would be in her best interest, but because it was in mine. I couldn't deal with it.

Another respondent talked about how the physical care for her mentally impaired parent was much easier than others in a similar situation. Note she used this strategy right after talking about her mother's incontinence.

She recognized she was incontinent, but I was always like a child. I said "when these accidents happen, Mommy will do it all the time, let's just fix this. You know, and she, she you know, that's was OK. That was good, I mean, when I talk to other people, when I listen to other people and what they have to go through with so many parents even younger than my mother, I was very fortunate, just plain fortunate, very lucky and very blessed so my mother could still wash her face, and she had teeth, so she'd take the false out and get herself ready for her bed, put her pajamas on.

Another subject of comparison with others was involvement of family. One only adult son saw it this way:

Frankly, from what I have observed from talking to other people, I think it is better being the only kid with a wife than it would be to have siblings. Because when it is too many siblings you never get nobody to sign on the dotted line.

Another respondent, who was also an only child, however, was ambivalent about the benefits of being a sole decision-maker with no options to share the burden with siblings.

I think it would be, I could see it a lot easier if you had a bigger family helping and but I guess that has its drawbacks to. That kids can view something different. This way I can just make a decision and go ahead with it. I think it is better to have a family make the decision rather than one person. Just like I think its better for her too, such as [the daycare] to have a support group among other people who are also having memory problems.

Category 2. Spirituality

Spirituality was very much a force in some of these respondents' lives. The relationship between spirituality and coping with their difficult situations was very complicated. At times, respondents sought direct comfort and gratitude from prayer, saying “The Lord has comforted me”. At other times, concern was about the parent's state of grace:

She's staunch Catholic. I myself was in the Catholic religion. I am no longer there. But I am in a church where we just lift up the Lord Jesus Christ as our Savior and you believe on him and that is it. If you accept Him as your personal Lord and savior. We talked to her about it but we did not want to push. We wanted her to make the decision. This is not something you can push on to somebody. She just did not want to talk about it. She'd say I don't want to talk about it. So we just kind of left it. She's been in our prayers, on our salivation prayer request list and that's it. We are praying that Bonnie can get through to her. If anybody, Bonnie can and Bonnie plans on doing this. So for her spirituality I know she knows Jesus. I know she loves him, it's just that we want to hopefully impure that she you know, knows him as her personal Lord and savior. So that's where we are.

Another respondent contrasted his mother's faith with his lack of faith and seemed to regret that this was not currently an avenue he chose to take to moderate his feelings about the situation with his mentally impaired parent.

Respondent: ...that helps my mother. Cause my mother is pretty religious and I think that she draws some strength from, the rest of us are not that much. That does seem to help her. Fortunately or unfortunately I guess seeing that, that provides some strength and consolation to her I think the rest of us and I don't know what your personal religious beliefs are but as a country as a whole I think our religious beliefs have dropped down and I think that is going to make this transition even more difficult as the population increases.

Interviewer: That we don't have the spirituality and that sense of comfort that this generation seems to incorporate into their life more than we did. Has she been able to go to church?

Respondent: Oh yes. She goes to church regularly.

Interviewer: That is great. So that is really another dimension of support, which you are kind of missing it sounds like?

Respondent: Yes.

Summary

At various times during the course of numerous decision-making processes, adult offspring struggle to Find a Voice internally, as reality sets in that parents are no longer able to make effective and safe care decisions. Level of Contact consisted of Defining Condition, Safety Concerns, and Role-Reversion. Interpersonal Conflict involved a Conscious Choice, Sole Responsibility, Strained Family Relationships and Sharing the Load. 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).

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. 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. 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.

As adult children moved through the Level of Contact phase, they inevitably encountered issues about the safety of the parent's behavior. 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.

Respondents spoke of consciously choosing to a major contributor to the caregiving and making care decisions for mentally impaired parents. 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.

Many respondents talked about how the role of main care decision-maker for their mentally impaired parents fell to them while some respondents talked about sharing the load of decision-making and care taking with siblings. If the respondent was an only adult child, or if a sibling was deemed unable to handle the responsibility, consultation was with the spouse: Respondents with siblings noted that sisters and brothers were uninvolved. Some respondents eventually decided to directly ask for help. Others waited for an offer of help from siblings, which never materialized.

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, Sole Responsibility for much, if not all, of the time.

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 memory, which 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 Sharing stage to make plans and stand in the parent's stead in a world the parent no longer understood.

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. This, if the adult son or daughter perceived a thread of memory, which connected the mentally impaired parent with them personally, seemed to be enough of a connection to base current needs on past perceptions.. On the other hand one respondent noted that he did not know his mother intimately enough to correctly guess her needs.

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. Other respondents turned to the Department of Aging for information about care for their mentally impaired parents.

Inevitably, respondents cited Finances as an important part of the picture when they were making choices about mentally impaired parents' care. 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 .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    

Caregiver Wear and Tear was a stimulus for the Providng Assistance stage of decision-making.. 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.

Other respondents cited the lack of time they had to attend support groups: Time Constraints acted as both a driving and restraining force in the Providng Assistance stage of decision-making. Many respondents took this factor into consideration when choosing or changing a daycare placement.

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.

Adult offspring learned and implemented ways of Dealing with It, the It being the Caregiver Wear and Tear, Time Constraints and Problems with Care of their mentally impaired parents by Providng Assistance and taking care of themselves at times.One of the most important and effective strategies that adult offspring learned during the Providng Assistance phase was Becoming Assertive and direct with their mentally impaired parents. This did not come easily for these adult sons and daughters but once implemented seemed to make the difference in being able to continue their role as care decision-maker.

Adult offspring learned to cope with Being Assertive with their mentally impaired parents even when parents might not be too happy about what they were being asked to do.

When adult offspring family that their options for Providng Assistance were getting more limited and Dealing with It by usual ways of coping did not work, they often entered in the Self Sufficiency stage of decision-making. Two ways that this phase of the decision-making process was helpful to adult offspring decision-makers was to look at their situations in a more positive light by Comparing with Others. Some respondents also turned to their Spirituality to cope.

One of the most frequent strategies that respondents used to make their situations with mentally impaired parents more tolerable was Comparing with Others in similar situations. Almost always, respondents would Express Gratitude that their situations

The relationship between spirituality and coping with their difficult situations with mentally impaired parents and all that entailed, was very complicated. At times, respondents sought direct comfort and gratitude from prayer, saying “The Lord has comforted me”. At other times, concern was about the parent's state of grace:

CHAPTER V

DISCUSSION

Decision making

Naturalistic Decision Making

Adult Children as Decision Makers

One of the barriers that adult offspring encounter when trying to recognize that their parents might need help with decision making is making the leap of seeing their parents as unable to make safe and effective decisions. This could be initially understood as role reversal where two people exchange roles. Power and role-taking theory argues that social structural arrangements influence face to face communication processes. In a review of theory, research and practice, Forte (1998) examined 26 quantitative studies, which supported propositions regarding the relationship of unequal power to role taking propensity, accuracy and empathy. Further examination of 8 qualitative studies helped with theoretical refinements of asymmetrical role taking while 15 effectiveness studies suggested that role-taking processes in asymmetrical relationships could be changed. The social structure of a family assumes that parents are capable and in charge. Indeed, the justice system has protections in place should children face unsafe conditions at home. The mind frame of the adult child is still of the capable parent, independent and strong (Bowlby, 1979; Krause & Haverkam, 1996). As one respondent in this project put it:

...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.

This paradigm shift involves overcoming strong memories as parent as powerful. However, instead of simple role reversal where the parent became the child and the adult offspring the parent, mentally impaired parents became younger and younger while a normal child would progressively learn more skills as they grew older. This could be called a type of role reversion where there is backsliding and decline on the part of the parent. In response to this situation, the adult offspring does not truly play the role of a normal parent but must cope with uncertain and unusual circumstances. This respondent talks about how her mentally impaired mother does not recognize her own house.

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.

Later in the conversation, the adult daughter acknowledges that her mother will grow even more forgetful and disoriented. There is no expectation that her mother will make the connection to family and environment whereas the expectations of mental connections are present as young children grow up.

In contrast to academia, where researchers and theorists (Ackerman, 1958; Perlman, 1968; Speigel, 1971) used role theory as a way of understanding human interactions, Blatner (1991) theorizes about a construct of role dynamics that takes the empirical into the practical application of everyday life. Giving credit to Moreno whom was a pioneer in the field of role theory, Blatner contrasts role dynamics with role theory:

Role dynamics uses a dramaturlogical model of human experience. People's interactions are seen as involving both expressed and unexpressed elements, and these unfold in a dialectical process that cannot be easily classified in terms of personality types. People play a variety of roles; these often conflict, both intrapsycically and interpersonally...[role dynamics is a] pluralistic model (as differentiated form a reductionistic model) of human experience [which] encourages a wider range of involvements. In the realm of drama, many roles may be played, not only basic social and organizational roles but also character roles, combinations of roles, and roles that are played in different ways...Instead of attempting to interpret human in terms of a few basic drives or mental mechanisms, role dynamics celebrates the possibility of thousands of motivations and ways that people interact. In this sense it represents a more humanistic approach to psychology that recognizes that the human psyche is far more complex and subtle than the nervous system of laboratory animals (Blatner, 1991, pp. 33-42).

Blatner (1991) goes on to say that the pluralism of role dynamics help individual to conceptualize themselves as having many parts. Indeed, he playfully names this ‘multiple personality order' (as opposed to disorder) where there is a “truly flexible and vigorously open-ended sense of self” (pp. 33-42) with many parts rather than one true definable and unified self. Realization that one can coordinate the various parts of self and also achieve role distance by reflecting on, reevaluating, redefining, and renegotiating various life roles, could create a sense of power and control in adult offspring who are undergoing role reversion with a mentally impaired parent. It might be easier and faster for them to acknowledge that the parent is no longer in the role of older, wiser one when the insight is reached that both they and their parents are more than beings immersed in mindless roles and, therefore, not identical to parts they play. Human “existence is more complex, transcending any and all of obvious roles [one] plays” (Blatner, 1991, pp.33-42). Thus by keeping intact the existence of a parent but relinquishing one's conceptualization of the parent role, the adult offspring might be more likely to be able to find an internal voice where they would move toward treatment more rapidly. This is especially important as earlier and more effective drug therapies are developed for early dementia.

Caregiving

Adult Children as Caregivers

Since all respondents had a mentally impaired parent living within their own household, they were at once both decision-makers and caregivers. The caregiver role has been described as a career, which is somewhat “self-directed, chosen and governed by personal decisions...The career person is in charge, shapes the trajectory and develops mastery of the career situation” (Lindgren, 1991, p. 214). In the caregiver career, the caregiver manages the care recipient's illness and use of outside services. Everyday activities become a matter of obligation and can be seen as unending since the end of the career cannot be predicted. Lindgren (1993) studied the caregiver role as career in a descriptive qualitative project of 10 caregivers of demented spouses and found three stages of the caregiving career. These stages, the Encounter stage, the Enduring stage, and the Exit stage can be compared to the decision making stages of adult offspring making care decisions for mentally impaired parents found in the present project.

In the Encounter stage, caregivers experience the “loss of loved ones as healthy robust persons and begins to realize an unchangeable course of chronic illness is ahead''...[this stage] requires significant adaptation to the monumental changes in their lives. Often they have to relinquish hope that things are going to get better and replace it with the realization that changes are permanent” Lindgren, 1993, p. 216). Caregivers use seeking information as a strategy to cope with stress and ward off hopelessness. In the this stage, Lindgren (1993) recommends that caregivers need information about the illness and about how to acquire the skills needed to take care of the mentally impaired parent. In addition, support groups would help them adjust to this new role in their lives, particularly if the group is composed of members that are in similar stages.

The first three stages of decision making for mentally impaired parents found in the present project seem to correlate with the Encounter stage detected in Lindgren's (1993) project. Similar to the Encounter stage, the Level of Contact stage includes the task of accepting the mental decline of the parent as adult offspring struggle to Define the Condition amid Safety Concerns and Role-Reversion. In the Interpersonal Conflictstage, the adult offspring made a Conscious Choice to accept Sole Responsibility for making decisions and caring for the mentally impaired parent. And, finally, in the Personal Sharing phase, the adult offspring is Getting Information about care options and Finances.Findings in the present project indicate that adult offspring would benefit from information about the disease process so they can recognize symptoms early on and seek treatment for the mentally impaired parent. This would need to take place in the context of attachment theory and the internal working model of the parent-child relationships, which adult offspring carry with them from childhood (Pearson, Cowan, Cowan & Cohn, 1993). Since the Level of Contact stage is usually invisible to health care professionals, a public health campaign to inform the public of abnormal mental changes in the elderly possibly including billboards and television commercials would be helpful. This would need to be done in a way that would contrast normal and abnormal changes so that ageism is not promoted. Other interventions could include individual and group counseling. Several respondents in the present project stated that personal counseling had helped them a great deal to understand themselves and their families in this difficult transition.

The Enduring stage described in Lindgren's (1993) project can be compared to parts of the Personal Sharing stage and the Providng Assistance stage found in the current project. Lindgren (1993) describes the Enduring stage as characterized by heavy work, adjusting to the role and establishing routines for handling different caregiving situations. Caregivers adopt a one-day at a time coping strategy and give little thought to the future. Social isolation becomes a problem and caregivers might feel overwhelming frustration and loss. During this stage, Lindgren (1993) recommends that healthcare professionals assess the social support system of the caregiver and the caregiver's physical and mental health and self-care.

As in the Enduring stage described in Lindgren's (1993) project, the Personal Sharing phase of decision making is where the adult offspring begins to Express Goals for the mentally impaired parent. In the Providng Assistance stage, the adult offspring is in the thick of caring and making decisions for the mentally impaired parent, experiences Caregiver Wear and Tear, Time Constraints and Problems with Care. In contrast to Lindgren's (1993) three stages of caregiving, this project found that in the Providng Assistance stage, adult offspring sought coping strategies such as Dealing with It and Becoming Assertive. In addition, they went through an Self Sufficiencystage where they were favorably Comparing with Others in similar situations and turning to Spirituality. It seems that these adult offspring caregivers had moved on to coping strategies as compared with the spouse caregivers in Lindgren's (1993) project.

Appropriate interventions during the Personal Sharing stage would be would be to help the adult offspring decision maker to make realistic goals and to match these goals with available Finances and what the Guessed Needs of the parent are as perceived by the adult child. Respondents in this project turned to the Department of Aging and neighbors and friend for information about community resources but often did not understand profits from non-profits. Non-profit daycare centers offered similar services for lower cost but frequently did not provide transportation. In addition, several respondents stated that guidelines need to be much clearer about tax deductions and the different types of power of attorney.

In the Providng Assistance stage, Caregiver Wear and Tear needs to be assessed and addressed. In a review of the literature concerning the impact of dementia on family caregivers, Connell, Janevic & Gallant (2001) found that “the evidence linking dementia caregiving to negative mental health outcomes is compelling and consistent. Caregiving has been “associated with increased levels of depressive symptoms and a higher prevalence of clinical depression and anxiety. Psychotropic drug use is also higher among caregivers than noncaregivers” [Schultz, O'Brien, Bookwala & Fleissner, 1995] (pp. pp.179-187). Several respondents in the current project reported that they were taking psychotropic drugs, which proved to be very useful in helping them to cope with such a difficult situation. Given the new class of antidepressants on the market, which have been shown to modify brain chemicals to alleviate depression, obsessive thoughts and other psychiatric symptoms, it would be in the best interest of caregivers to know that these drugs are acceptable to use when warranted, do not mean that they are “crazy” and that the drugs are nonaddictive. On the other hand, anti-anxiety drugs need to be taken with caution and careful monitoring given their addictive nature.

In contrast to the clear findings that dementia caregivers' mental health is affected by the stress of caregiving,

...the association between caregiving and negative physical health outcomes, however, is more equivocal. Although caregivers report that their overall health is worse than noncaregivers, evidence of the impact on chronic illnesses and conditions, self-reported symptoms, health behaviors, cardiovascular functioning, and health care use is inconsistent”...A small but growing body of literature provides evidence that health behaviors may represent an important mediator of health outcomes in the caregiver stress process. Compared to noncaregivers, caregivers are more likely to experience inadequate time for sleep, self-care, and exercise [Burton, Newsom, Scultz et al,1997; Schultz, Newson, Mittlemark et al, 1997] . Dementia caregivers, in particular, report sleeping less and having more sleep problems [Kiecolt-Glaser, Dura, Speicher et al, 1991; Fuller-Jonap & Haley, 1995], lower levels of exercise [Fuller-Jonap & Haley, 1995; Vitaliano, Russo, Scanlan & Greeno, 1996], and significant weight gains [Vitaliano, Russo, Scanlan & Greeno, 1996; Fredman & Daly, 1997] compared to noncaregivers. Some studies, however, show that caregivers may not be at a disadvantage in terms of health behaviors. For example, several studies [Burton, Newsom, Scultz et al,1997; Kiecolt-Glaser, Dura, Speicher et al, 1991; Fuller-Jonap & Haley, 1995; Bumgarten, Battis& Battista, 1992] have demonstrated that smoking rate and alcohol consumption may be similar or even lower among caregivers than noncaregivers( pp.179-187).

In this project, several respondents reported difficulty taking care of themselves when they had an acute illness. The main factor in this lack of self-care seemed to be Time Constraints. Although health problems of caregivers is beyond the scope of this project, Caregiver Wear and Tear did emerge as category of Providng Assistance and needs to be understood in terms of how it affects the decision making process of the adult offspring who is making care decisions for a mentally impaired parent. It does seem evident that the issue of Time Constraints needs to be addressed. This issue even showed up when the caregiver sought respite care. Convenient and timely transportation became an important factor in choosing daycare. Overnight respite sometimes became a nightmare when multiple forms needed to be filled out and arrangements made long in advance were canceled by the facility at the last moment. Perhaps legislating that admission forms be identical so one form will “fit all” and mandating that a certain number of beds in long term facilities be designated as “respite only” would help caregivers feel a sense of certainty when reserving accommodations when they need a break.

Limitations of the Project

One of the limitations of the project was the sample. The researcher initially intended to interview respondents who were at various points in making decisions about a wide range of care options. Subjects, in this project, however, were adult offspring who had made a decision to bring the mentally impaired parent into their homes and to also use respite services, including daycare and, in some cases, overnight respite care. Therefore, any differences in the decision making process for those considering other care options such as long term care was not examined.

Another disappointment in recruiting respondents for this project was the ethnic diversity of the sample. Although there were four African-American respondents were from Baltimore City, three were sisters interviewed together. Two other Black respondents from Columbia, an ethnically diverse community, were also interviewed together as the adult son and daughter-in-law of a mentally impaired mother. Since this represented decision making about only two mentally impaired parents, the data is limited in scope. The difficulty in recruiting minorities for this project might be reflective of the fact that minorities have little access to caregiving options and do not enter into supplemental, formal caregiving systems. These facilities might be prohibitive because of location and/or finances. Efforts by the researcher to include at least one facility that served a Black population went unanswered even after the facility administrators initially agreed to provide a list of possible project participants.

The researcher, being a novice at this type of research, failed to reduce the initial transcripts into relevant data. This presented an overwhelming amount of both relevant and irrelevant data, which slowed the process of coding and, perhaps, confounded the findings. The use of the software package ATLAS.ti, however, did help in making the line by line coding orderly and coherent despite the extensive amount of wandering off the point by project participants.

In any qualitative project, the reader must be cautioned that the findings are specific to the population studied in a particular context and, therefore are not generalizable to all situations where adult children are making care decisions for mentally impaired parents. It does, however, provide a unique insight into what some of this population goes through as they work their way through the minefields of childhood memories, family dynamics, parental expectations, difficult emotions and actual, realistic options and goals. Since these are such universal themes, it is not unreasonable to expect that others go through a similar process when making care decisions for mentally impaired parents. Indeed, Steeves (2000) talks about an instance where he received criticism from the editors of a journal he had submitted an article to that he had gone beyond the data. After reflection Steeves (2000) decided this critique was actually a compliment. He had used the data to “think about the world in a broader way...[which he called] ‘thinking with the data'” (pp.97, 98), a term he attributed to Geertz.

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