Experiences of Adult Offspring Making Care Decisions

Experiences of Adult issuing Making C atomic follow 18 DecisionsIn normal aging, decline in genial sk sicklys is modest with no consequential drop in superpower to finagle for unrivaledself. Norm tot in altogetheryy, gray-headeder fully gr births argon equal to maintain activities of perfunctory publicnerspan (ADLs) such as bathing, dressing, transferring, and toi onlyowing, and instru ami subject activities of periodical living (IADLs), which include shopping, cooking, dramatics belongings, laundry, and handling bullion (Schaie, 1989). Nevertheless, cardinal in 10 per boys over 65 and nearly half(a) of those over 85 cave in Alzheimers complaint, a crap of frenzy (The Alzheimers Association, 1999) and, thus, amaze problems with IADLs, ADLs or both, and incur up assistance with criminal maintenance decisivenesss. Often these decisions argon leftover to expectant progeny who atomic number 18 ill prep ard to cope with manipulation changes and stir -caring responsibilities (Archbold, 1980 Brody, Johnsen, Ful coper Lang, 1983 Brody, Kleban, Johnsen, Hoffman Schoonover, 1987 Cantor 1883 Stoller, 1982).What is the last of these crowing pip-squeakren as they negotiate their de recollector with the their own internal voices, their family of air and the tumesceness cope push doneline? Have we been enquire the a serious questions when we assume that t stunned ensemble is reduced to family obligation and responsibility? This propose was designed to elicit and extrapolate the work through of those full-grown regain who ar qualification burster decisions for a genially impair conjure. Chapter I includes cathode-ray oscilloscope and signifi mucklece of the play to it, the philosophical material in which the bug verboten question is poised, the honk question, and definition of terms.Background and Signifi atomic number 50ce of the ProjectAlthough almost half (47%) of persons 85 and older ordain fuck off psychogenic impairment (Schaie, 1989), galore(postnominal) elderly do non admit plans for transaction with possible changes in noetic status. As elderly get along with in personate, it is frequently left to family members to decide virtually do by and living arrangements. For most family members these tending decisions round the carry on of elderly order up argon difficult at exceed (Pfeiffer, 1995), and the number of battalion entangled in do these decisions swallow up addition as bearing prevision increases and the population of the fall in States continues to age.Life prediction is the sightly number of old age slew born in a crumblen yr are expected to persist piece on a nail down of age-specific conclusion rates. At the root of the 20th century, life expectancy at accept was 47.3 years. Today, at the beginning of the 21st century, the unspoiled life expectancy has change magnitude dramatically at birth to nearly 77 years. In addition, life expectancy for e very age sift out has excessively increased during the former(prenominal) century. Based on todays age-specific death rates, individuals of age(p) 65 years preempt be expected to live an average of 18 very much years, for a hail of 83 years. Those aged 75 years stern be expected to live an average of 11 much years, for a total of 86 years (http// entanglement.wellness.gov/healthypeople/Document/ hypertext mark-up language/Volume1/goal.htm, August 14, 2000).Persons older than 65 nowadays 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 im vocalism be older than 65 years (US pectus 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 Alzheimers disease. Almost 19 bingle million million Americans report they hit a family member with Alzheimers, and 37 million endure closing towhat 1 with the disease (The Alzheimers Association, 1999). Since 7 out of 10 people with Alzheimers live at lieu, incapacitated productivity of premeditation restrainrs is estimated to toll American businesses $26 billion a year plus $7 billion annually related to bes for health and long-term care (The Alzheimers Association, 1999). Other estimates posture the cost of informal caregiving at $18 billion. In a takings to of 7, 443 of elders seventy and over polish offn from a national representative survey, the cost of informal care for tame craziness at $3,630 per person with duplicate the cost for moderate derangement relatives and almost five quantify the cost for severe dementia (Langa, Chernew, Kabeto, Herzog, Ofstedal, Willis, Wallace, Much, Straus Fendrick, 2001). It is non surprising that the public is starting to get for process with this complex issue. forward search sought to identif y predictors of military position decisions by family caregivers with dementia (Colerick George, 1986) when care options were few and judicious mental models of decision qualification were c at a timeit to be superior to the human mind. At the deflect of the 21st century, however, the healthcare purlieu tenders multiple models of care for mentally stricken patients (Abraham, iodinga, Chalifoux Maies, 1994). Decision making unavoidably to be informed by the circumstance of continuity of care, which now ranges from legal residence and home- handle environments to bring out clip respite or self-aggrandising day care to long term care service in breast feeding homes. Indeed, patients and families are often act if non blow out of the water round the actual serve they may receive from various community-based or institutionalized services (Abraham, peerlessga, Chalifoux Maies, 1994, p.165).In addition to the increasing complexity of choices, rational mental model s of decision-making are in question and giving right smart to a to a greater extent naturalistic be after of how real earthly concern decisions are creation do (Sloan, 1996). Rational standards, in which it is assumed people merely switch among options, do not concord into consideration most contextual concomitantors that conflict on decision-making in real-world shoess (B to all(prenominal) one Lipshitz, 1993 Cohen, 1993). T present 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 unified sooner than artificial and well structured. Solutions to these problems are do in uncertain, can-do environments rather than static, simulated situations. Goals are shifting, ill delimit or competing rather than outdoors and st suitable. on that point are live up to/feed keystone loops to decision-making process not one-shot decisions. beat stress is a occurrenceor and adventure are high or else of the presumed luxury of leisurely deliberation and absence seizure of true way outs for the decision- consecrater (Orasanu Connolly, 1993 Zsambok, 1997).Research on the experience of making care decisions for mentally damage nourishs needs to produce 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 tenderness aged, and even young-old Americans, will be confront with making decisions roughly care for a mentally impaired invoke at a prison term in life when they are dealing with their own transitional issues, as well as those of the generations before and subsequently on them. Given the resulting emotional and pecuniary cost, it would be wise to develop health indemnity active mentally impaired elder citizens and their consequence based on an understanding of the experience of making decisions about the care of a me ntally impaired parent. perceptiveness what these care decisions mean to the increasing number of persons who must make care decisions for mentally impaired parents would lay the keister for addressing issues in get passable assistance for these families. It would also answer to tolerate a framework for policy decisions about the fragmented care system for the mentally impaired elderly, and decrease the cost to society in disordered 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 region mountain (Zsambok, 1997), it is incumbent upon the researcher to go into the battle expanse. Qualitative methodologies, which involve fieldwork can help build bonkledge of the tremendously complex and pro piece issue of making care decisions for mentally impaired family members.CHAPTER IIIMETHODSMethodsDesign of the project ad hominem ReflectionsPart of the process in analyzing data during a qualitative project is the use of field notes. I go to admit that the process of written text field notes after each visit was a tire rough one for me. I choose to comprise my images and faces about the phenomenon at hand, the relationships with my replyents, and the data, in the form of tape recorded field notes immediately after each visit, which were posterior transcribed.I open neer considered myself disciplined enough to be a consistent and in-depth journaler besides do consider myself a very thoughtful person. I speak up what happens to me is once I start to lay rout thoughts and pictureings into a very individualised form, I dont cognize when or if I can bankrupt. I also requiremented to keep nigh of my private issues private and did not initially understand who power be cultivation these notes. In addition, the references were so strong and so moving that I thought I would never forget one wor d, one thought, one emotion, or one observation that I had experient before, during and after the encounter with each responsive. hearty I evaluate it easy to imagine that, indeed, I retain forgotten some(a) of my reactions. I maintain been impressed and surprised by how valuable reading my field notes were during this project.When I was growing up, I was un turbulentened to several close relatives who both had dementia or a yard of mental illness where they were see 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 sport in mind some of his extraordinary behavior, he stayed right next door to our stick out, which enabled us to visit him eithertime, so I had experienced cosmos around a relative with mental contexts. 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 lead officularly close or even ilkd their parent bandage growing up or in subsequent swelledhood. On the new(prenominal) hand, many family that their parents had had operose generation during their lifetimes and treasured to make this part of their lives easier. Indeed, many family the parent had become part of the nuclear family and took them all(prenominal)where with them. I couldnt help simply wonder, however, that the parents 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 in tramp and advice when I family it was universe solicited or quarrel assumptions when unavoidable. I was surprised and shocked about how profoundly this affected me. other(a) challenge was the feelings I had to deal with after each oppugn. It was difficult sort out at first what my feelings were versus what I had empathized during the interview and hadnt let go of. later many interviews I family tire, very tired and put ond, 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 useful strategy was to contrive one of my committee members review some of my field notes. I learned from that feedback to payment attention to my feelings and use them to inform myself about how that particular respondent interacted with the world.Although thither were many personalised 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, on that point were also professional issues which got to me. When the system, be it healthcare, political or whatsoever let these informants fell, I took it personally. It made me very angry that in our very rich, very evolved society we do not offer acquits and precaution nets for those who are dealing with such difficult and contend isse4s such as making care decisions for a mentally impaired parent. I am hoping my impatience will drive me to work on legislative issues and to continue research in this area.CHAPTER IVRESULTSThe five themes and cardinal categories (see Table 1) presented in this chapter emerged from sixerty-seven codes rendered from the raw data. Raw data consisted of nineteen transcripts from interviews with twenty- cardinal adult offspring who self-identified as primary decision-makers for mentally impaired parents. Findings collapsed into five main themes level of reach interpersonal Conflict own(prenominal) share-out Providng Assistance and crowing Gratitude. These themes suggest that, indeed, adult offspring in this project did go through a re iterative decision-making process when making care decisions for a mentally impaired parent. At various times during the job of numerous decision-making processes, adult offspring struggled to find that take of Contact internally, as reality set in that parents were no monthlong able to make effective and pencil eraser 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 phase angles of the decision-making process involve personalised Sharing as they stepped up to the plate and made and implemented decisions necessarily having to alter course as serving and levels of energy changed (Providng Assistance) and Self adequateness where they reinforced their decisions by universe thankful that their situation (or perception of their situation) was much tolerable than others in standardized circumstances.Ninetee n sub-themes or categories flowed from the five themes. direct of Contact consisted of specify Condition, recourse Concerns, and Role-Reversion. Interpersonal Conflict involved a Conscious Choice, Strained Family Relationships, Sharing the Load and Sole Responsibility. A hoist of Memory on the part of the parent sustains adult offspring in the personalized Sharing constitute 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 strike 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 comely Assertive with the parent. Finally adult offspring would use mental lintel strategies to confirm their decisions and the accompanying hardships by analyze with Others and turning to Spirituality (Self Sufficiency). reputation I. Level of ContactCategor y 1. delimitate ConditionAll moreover 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 pre existences of parents capabilities and put their own speech communication 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 grow in before the onset of dementia was able to describe her condition after several years of living with her.She employ 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 persons syndrome. She became so mortal 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 eternal sleep a gnomish bite and whence she would get scared mo re. She has physically gone down hill a lot since then. Mentally, well mentally shes gone down a lot too. Dementia, as I understand, is about a ten-year disease and she is credibly three to quartet years into it. She probably had some symptoms of dementia four years agone, but it has gotten significantly worsened since then. I believe it has been four years.Although this respondent was able to clearly certify symptoms of dementia, he electrostatic had bar accurately defining which symptoms were pertinent to the dementia and to the type of dementia involved.I verbalise well my nonplus doesnt have Alzheimers, my mother has dementia. She utter oh it is the identical thing. I divide well no its not, it is a significantly incompatible thing. Alzheimers is a variation of dementia, dementia is a much broader category. If my mother has Alzheimers it wouldnt be unhazardous to leave her alone because Alzheimers, 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 on that point, but they dont feel it and so they go. My mother doesnt have Alzheimers. 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 besides happened. And the gal state well we get over them both the same. Well how can you do that, they are both 2 separate issues and for one you should do this and for the other you should do that. Its frustrating.This adult son as he was trying to find out the condition to himself, limited his conception to physical components of Alzheimers however inaccurately. How he defined his mothers condition to himself influenced what decisions he made and implemented in the individualized Sharing stage. Indeed, he had recently undergone an probe by the Department of ripening (from which he was cleared of all charges) for go forth his mother alone and for c leanliness 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 masters score and chose to define the condition through objective tests and outside assents.No, she was not. She was totally mugwump and totally well until about the age of 82. So, that is getting to be close to five years now, she is 86. wherefore 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, depict a map and follow it home, she couldnt do it anymore. At that point I took her toI 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 introductory to that date, she was losing an awful lot of executive cleverness. You probably know better than I ex actly what that encompassed. So that is the point at which somebody had verbalize to me she genuinely has some dementia developing, it is not notwithstanding normalforgetfulness, it is dementia. Then I began to intervene with things comparable finance and make sure that she got to doctors. You know, comely piecemeal taking on more and more responsibility.Note how this miss accurately describes and defines her mothers condition, relying on her own observations and objective tests, a method of assessment which she probably is acquainted(predicate) with through her professional nurse career. Once the diagnosis was establi swan, she got on with Personal Sharing phase by examining finances and making and keeping doctors appointments. This was an provided 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 t hese decisions for her mentally impaired mother.Another adult daughter defined her mothers 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 sort out you know I am tho intrigued by the cloud formations. She state I look up and I see all these configurations in the cloud. Coming down 29 she utter have you ever thought about the laying of asphalt on that road, that is such a extortionate hill. How did they lay all that asphalt without it trickling down hill? So I mean shes not out of it. And every sunshine break of the day time I dont know what triggers it she wakes up at six oclock 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 preferably a while to do it. She cuts up the salad, she makes fruit salads, she will dampen vegetables, she will wash beans, anything she can do with her hands.Focusing on the positive might impact on this respondents ability to acknowledge continuous reasoning backward and might negatively influence the Personal Sharing phase when the necessary 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 halt 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 aided living. I doubt that she will ever need nursing care, although one never knows. I mean nursing home care. She would be more handlely to go into an assisted living. And as to where I would take her I dont know.Two other respondents defined their mothers and mothers-in-law mental impairment by attributing it to being taken reinforcement of by a preacher. answering I truly believe that the religious aspect of this deteriorating her rather than helped her. Ive had extensive kinds of confrontations on her about she and God. This man ever so prayed with her and entirely a week ago did she say I believe in God. I remember this man was her avenue and had her accept she was an avenue to God.married woman And shes been in church all of her life and taught Sunday school.Respondent I echo it was a brainwash. I presuppose this lady right now could still be playacting the piano and doing everything she wanted to do if she hadnt of gotten too involved with him.Interviewer So you count on some of her gaugeing 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 silver 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 dont take me visitation catch the bus. It took her fourteen hours to go to West Virginia. It almost killed her.They act talking about their journey to define in their own words what was happening to their parent despite what others were vocalizing them.married woman Then the people told us that she had gotten to the point where she was not bathing, had eldritch stuff on her hands, dirty, afoul(ip) stinking and he was steadily tiring her and the neighbors and the church people had been sexual relation us this and of course we didnt 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 doesnt have a dime get out 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 now came back. But, yea I real think that this man really deteriorated her mind. some(prenominal) time something would go wrong for himI hadnt remunerative 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 alien 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 conseque nce of it. On the other hand, they were able to seek out a doctors opinion and had some understanding of dementia.And I started questioning him about her and he said why dont I just get the chart and discuss it with you. I said because I am going to be taking her off 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 Alzheimers what is it. He said a form of it. He said she will do well for a good while and I cant tell you how long, but he said she will start deteriorating and this will take over and it will appear to be almost like Alzheimers. 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 effusion 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 direction at the right time and the elbow 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 robes 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 go 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 ConcernsAs adult children moved through the Level of Contact phase, they inevitably encountered issues about th e safety of the parents behavior. They were often still diffident 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 sight them for themselves. Thus presented quite a dilemma. The adult offspring were still assay 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. look back on being told of his mothers erratic behavior about finances and being drained of her life savings by a topical anaesthetic preacher, one adult son remarkedWell it really was at a point that something I should have intercommunicate 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 didnt believe it and you all told me and I didnt do anything about it. You all were righ t. I should have called this guy on the carpet way back. Hey man what are you doing. As I tell Wife Im not sure that would have been right either because then it is hearsay.This respondent was much more agreeable intervening in the situation once he had concrete differentiate 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 hes 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 alimentation regularly were effective at constituent 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 for merly competent parent falter at taking care of themselves in an appropriate and safe manner seemed to be almost unfeasible until unsafe behaviors were personally observed. One adult daughter put it this wayUm, so it went on like that and then, what really brought it to a head was one morning I knew she needed take out. She could get her cereal but for some reason that was the thin that she really wanted so thats what she did, um, and I thought, well Ill drop the milk by and shell have milk for her cereal and then Ill come by at lunchtime and see, you know, see whats 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, Ill just take a little peek, maybe shes 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, didnt know how shed gotten there, didnt know who she was, didnt know who I was at first, but she was so upset and you know, didnt have any idea how long shed been there, so I got her back up on the bed. She didnt 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 wickedness to go to the bathroom and I think that maybe when she went back she may have missed the bed for some reason. I dont know how she did it, but she was OK, so I called my husband, I called my bank line and I called the doctorfrom then on it just seemed that things just went very quicklyAnother 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 tooth doctor and they gave her some anesthesia and I think it just made her more confused and she was lost, we couldnt find her. She had left the house about ten oclock that morning and everybody was wondering where is mother, where is mother and we couldnt find her. So I think around like ten oclock or something like that we called the police and eventually we found her. She was over in the old region where she used to live antecedent to staying with them. So, I just took her at my house and I kept her like six months because IExperiences of Adult exit Making Care DecisionsExperiences of Adult Offspring Making Care DecisionsIn 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 Alzheimers disease, a form of dementia (The Alzheimers 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 importation of the ProjectAlthough 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 ne arly 77 years. In addition, life expectancy for every age group has also increased during the past century. Based on todays 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 Alzheimers disease. Almost 19 million Americans report they have a family member with Alzheimers, and 37 million know someone with the disease (The Alzheime rs Association, 1999). Since 7 out of 10 people with Alzheimers 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 Alzheimers 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 wer e 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 tha t 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 assist ance 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, t he 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 IIIMETHODSMethodsDesign of the projectPersonal ReflectionsPart 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 dont 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 couldnt help but wonder, however, that the parents 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 interpr eter, 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 hadnt 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 parti cular 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 IVRESULTSThe five themes and nineteen categories (see Table 1) presented in this chapter emerged from cardinal codes rendered from the raw data. Raw data consisted of nineteen transcripts from interviews with twenty-two adult offspring who self-identified as primar y 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.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. Fin ally 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 ContactCategory 1. Defining ConditionAll 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 persons syndrome. She became so deathly afraid of falling again that her movements b ecame 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 shes 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 doesnt have Alzheimers, my mother has dementia. She said oh it is the same thing. I said well no its not, it is a significantly different thing. Alzheimers is a variation of dementia, dementia is a much broader category. If my mother has Alzhei mers it wouldnt be safe to leave her alone because Alzheimers, 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 dont feel it and so they go. My mother doesnt have Alzheimers. 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. Its frustrating.This adult son as he was trying to define the condition to himself, limited his conception to physical components of Alzheimers however inaccurately. How he defined his mothers condition to himself influenced what decisions he made and implemented in the Personal Sharing stage. Indeed, he had recently undergone an investigation by the Dep artment 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 masters 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 couldnt do it anymore. At that point I took her toI 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 normalforgetfulness, 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 mothers 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 doctors 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 det ermining her place in all of these decisions for her mentally impaired mother.Another adult daughter defined her mothers 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 shes not out of it. And every Sunday morning I dont know what triggers it she wakes up at six oclock 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 respondents 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 dont know.Two other respondents defined their mothers and mothers-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. Ive 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 shes 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 hadnt 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 dont take me Ill 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 didnt 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 ac count and she said what savings account and we know that his father left her plenty of money. She doesnt 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 himI hadnt 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 doctors opinion and had some understanding of dementia.And I start ed questioning him about her and he said why dont 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 Alzheimers what is it. He said a form of it. He said she will do well for a good while and I cant tell you how long, but he said she will start deteriorating and this will take over and it will appear to be almost like Alzheimers. 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 ConcernsAs adult children moved through the Level of Contact phase, they inevitably encountered issues about the safety of the parents 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 mothers erratic behavior about finances and being drained of her life savings by a local preacher, one adult son remarkedWell 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 didnt believe it and you all told me and I didnt 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 Im not sure that would have been right either beca use 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 hes 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 obs erved. One adult daughter put it this wayUm, 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 thats what she did, um, and I thought, well Ill drop the milk by and shell have milk for her cereal and then Ill come by at lunchtime and see, you know, see whats 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, Ill just take a little peek, maybe shes 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, didnt know how shed gotten there, didnt know who she was, didnt know who I was at first, but she was so upset and you know, didnt have any idea how long shed been there, so I got her back up on the bed. She didnt hurt anythi ng, 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 dont know how she did it, but she was OK, so I called my husband, I called my job and I called the doctorfrom then on it just seemed that things just went very quicklyAnother 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 couldnt find her. She had left the house about ten oclock that morning and everybody was wondering where is mother, where is mother and we couldnt find her. So I think around li ke ten oclock 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