University of Utah/Alzheimer's Association Study - 1993
Selective Qualitative Data by Rachelle E. Adams

 

 PATIENT DECEASED:
"I'm restless -- don't know what to do with my life. Need companionship."

 

"This has been difficult for me. My husband showed signs of Alzheimer's 4 years
ago. He was diagnosed in Dec. of 92 -- when he entered the hospital for CHF. In  
'93 he had to enter the Care Center and he died [very recently]. so you see it was difficult to answer the questions. Hope it will be of some help."

 

Male patient deceased recently, had multiple physical health problems: "A daughter living in the same area was invaluable -- she and a sister and brother were practically the only help -- the last 6 months we had home health (one 3 times a week). I would have felt very alone at times if it were not for my one daughter's help. I [have a medical background] so I felt fairly well prepared. Understanding one's own feelings of desperation when the best you can do is not helping was hard to deal with. [Other sources of stress over the past year]: Worry over some of my children's health. [How do you feel about your life as a whole?] Mostly satisfied. I knew for many years what my husband's last years would probably be like. You are never totally prepared emotionally but I feel I handled it quite well and he appreciated it. So did my family."

 

Patient deceased: "I was with a sister-in-law from 16 years old until she died at 83 years old, and seen her from a beautiful, sweet lady, to a very sad and sick Alzheimer Person. We were together most of the time the last 30 years. It was terrible seeing what was happening to her. I loved her dearly. All I could do was be very patient and kind to her. After she was in the home if I stayed for two or more hours, talked and visited, some part of my dear friend and sister would come through and respond some."

 

Patient deceased; respondent older female: [Other sources of stress]: "Plenty. My son drank, got on drugs and threatened my life -- figuring out my problems. I'm alone now and quite happy and want to forget the past -- don't want to be reminded. My husband died 4 years ago...he broke his hip and was put in a Nursing Home for 8 months before he died. I did everything for him I could. The
only time he would settle down was when I would drive him out in the country. [How you feel about your life]: Mostly satisfied. If I'm careful, I have enough money  to take care of me left and I'm able to do as I please. It's taken years to get my nerves and other emotions settled down."

 

Patient deceased recently:" Bless you for whatever help can be given those who
struggle with this horrible thing. It was indeed a nightmare that one never forgets.

Respondent 50 year old female: [What was the initial diagnosis?]: dementia, old
age, off the record suspected Alzheimer's -- suggested we seek no documentation for insurance reasons.  [Probability of loved one living in Nursing Home?]: I'm sure she would have had she not had the stroke. She was becoming very hard to deal with and very demanding. [Enjoy spending time with patient?]: It was becoming harder all the time. [What did you feel unprepared for?]: Not always sure how to contact agencies that could have helped more.  I do not believe I had any physical problems due to mother living here. I had some emotional problems and some marital problems. [Mostly satisfied with life]: Because I am and if I'm not I'd better get on with making it that way. Happiness is optional! Everyone has problems. [Response to questions dealing with feelings this past week]: I can't really answer these questions -- I had some bad times but now that she is gone I choose not to dwell on any of this."

 

Patient deceased very recently. "Before my husband was diagnosed as Alzheimer's my life was mixed (with his ups and downs). When diagnosis was made of course I was very unhappy."

 

Patient deceased a few years ago: [Felt unprepared for]: "Didn't know what kind of behavior to expect, especially initially when behavior started to show mental impairment. [Wish I had known]: what services were available to assist."

 

Patient deceased; (spouse): "I did not take him any place and I did not go only when I had to, like store, Doctor, etc. [Other sources of stress]: When you have lived in isolation for so long you cannot force yourself to go in public and pick up your life."

 

Patient deceased; respondent daughter: "Mother hid her panties when she soiled then -- you found them from the odor. I had put her name on a [nursing home] waiting list when she died. My health and marriage made it necessary.  [Felt unprepared for]: The time drain on our lives as well as the physical and mental strain at this age. When Mother was with us it was pure role reversal -- I became her "mother figure." At retirement, this was a difficult occurrence. Our "freedom" was gone. She had seizures the last 18 months of her life -- if she fell she could not get up. For an evening out, we obtained a sitter. Reliving this experience  2 years after her death, is an emotional experience. I have tried to answer the questions, drawing on memory. I'm truly thankful that I did not have to put Mother in a nursing home. She was widowed [in the 60s] -- lived alone until age 81. She was with my young brother then and a new wife. She had a lovely place, but was neglected by my sister-in-law. When I was made aware of it I moved her here from [the Mid-west]. It was my choice, and I'm happy for her that we were able to do it."

 

"[My mother] passed away while with us, in her favorite chair. It was a trying 2 years at my age, but I would do it again. The stress caused a heart irregularity, but hopefully I will continue to improve. Thanks for your interest."

 

Patient deceased ; respondent spouse: [This respondent was so thorough in her answers that  she broke down her answers to questions on scales into "A - all the way through; E - early, M - middle, and L - late stages".] "I was the caregiver for 7 1/2 years. I cared for him until incontinence and belligerence made it impossible to keep his clothes dry and the floor clean. He was in a Nursing Home 2 months.  I had to learn to give a positive statement instead of setting the record straight. To remember his words and actions were not what he would have chosen. To let all mishaps and errors in judgment "fly out the window." To try to picture how difficult life was for him being dysfunctional. I wish I could have learned sooner what his thinking was like. It helped to read the book written by an Alzheimers victim. I found it hard not to talk about him and get not too him as friends phoned and asked. [Additional stresses]: care to various degrees of an elderly Aunt. ["Mostly satisfied" about her life as a whole]: Whenever we accomplish a difficult task and do our best -- we feel good. I had mixed feelings. I felt both blessed and deprived. I lost my husband daily as his ability declined. It was a very difficult time in my life. I now feel free. I am grateful he has been released from his dysfunctional mind or state of mind. I feel I did my best. I'm so glad it is all over. It was a hard time. I had to let go of the memory of the last month and focus in on the years past when we enjoyed living. I cannot say I'm glad for the things I learned. It was too big a price to pay. But I'm glad I did my best to cope each day.  I enjoyed a monthly meeting with a support group -- most helpful. We used day care 2 days a week -- a life saver. Respite care for 3-4 days to get away.  I very much appreciated the home care nurse, aide and support from [the gentleman] who now leads the support group. Being able to "let it all out" at those meetings and learning what to expect -- a good way to handle problems was a great help. I couldn't have made it without those meetings, love and support."

 

Respondent spouse: "My husband has been dead for 5 years -- but I was his caregiver. My husband spent 4 years in a Nursing Center...where he died -- I placed him there after I could no longer lift him around.  The last year of Nursing Home care, though I went every day to see him and try to feed him, was an endurance test. [Felt unprepared for] The lack of his recognition of family including me.  If I had known the total responsibility to come -- it would have been too overwhelming, with my husband's gradual decline I could cope with taking over the money management while he could still understand something. The personal care was really a labor of love that I was sure he would have given me if things were different.  ["Pleased" with my life]: I am 77 years of age -- good health-- adequate income to do or go as I want, in spite of having paid out over $80,000 for nursing home care. I have a lot of friends and do volunteer service at the local self-supporting Community Center.  The 6 months previous to entering my husband in a Nursing Home I had a young man helper -- 4 hours daily. I put my husband in full care nursing facility after surgery that left him incontinent and I could no longer  lift him around. I chair an Alzheimer's support group that meets monthly...we have a phone number...to answer questions about Alzheimer's -- and give help to locate local services."

 

Deceased was 91 year old male; respondent daughter: [Felt unprepared for]: "My own emotional feelings/taking things personal. The lack of understanding from the rest of my brothers and sister. [Wish I had known about caregiving]: That help groups are a tremendous help just to know that others go through the same problems and feelings.  [Additional stresses]: The uncertainty of my job because of severe changes at my employment.  The lack of time to myself is a great concern. I feel that I have lost control of my own life, not just because of him but also because of having children who are all still somewhat and total my responsibility and are still dependant on me [This despite the fact that the respondent lists a husband as a member of the household]. [Do you have one person you can share your innermost thoughts and feeling with?]: Yes, but I have the feeling she doesn't really understand.  I answered these questions as though my Father was still alive in hopes that it might help as to my thoughts about the whole aspect of Alzheimer's. The most interesting part was to watch my 3 brothers age 45 to 55 years in complete denial until one of [my] brothers took him for a three-day weekend. It was the following week the decision was made to put him in a facility.

 

Deceased was 88 year old male; respondent step daughter: ("Only relative willing to assist").  [Felt unprepared for]: Handling aggressive behavior and  his financial affairs. [How you feel about your life as a whole]: "Delighted"-- Happy marriage for 50 years. [Listed her husband as her only support person with whom she could share her most personal thoughts and feelings.]"

 

Deceased female; respondent daughter: [Felt unprepared for]: "The difficulty of watching my mother deteriorate. Helplessness. [Wish I'd known]: more about the disease and effects. [Feel about life as a whole]: "Pleased;" I feel good about myself and my life."

 

Deceased 71 year old male; respondent spouse: "My husband died about five months ago after 13 years of struggle but I filled this out generally in hopes it might help you help someone else. Alzheimer's is a terrible disease that  both patient and caregiver struggle with. [This woman had mixed feelings about her life as a whole, and reported depression as an illness at this time.]"

 

Deceased was a 74 year old female; respondent spouse: ["Mostly satisfied" with life as a whole]: Have not attained all goals set for self. My wife passed away in 1992. I have answered the questionnaire relative to the 2 months prior to her death. [This respondent did not make very many comments.]"

 

"My Mother-in-law passed away several weeks ago. She spent the last four months of her life in a Nursing Home. She was becoming too hard for my
father-in-law to take care of by himself. With the severe winter we were afraid
there could be long periods I could not get to them. (They were 200 miles from us.) I answered the questions the best I could as they applied to the time I was with her. Had my father-in-law been answering, many answers would have been different. This was a real emotional challenge for him. He lost a lot of weight and his health really suffered. He didn't seem to be able to accept that she was not going to get well. He would sit and coax her to eat or try to force her to remember. After she went to the nursing home he spent everyday with her and felt he had betrayed her and was lying to her every time he said he would take her home when she got well. Since her death he has gone into a deep depression and will not seek help or let us help him. I hope this is of some help to you. I really appreciate the help I received from the [Alzheimer's] Association."

 

Deceased 1993; "Mother was in a nursing home for 11 1/2 years. This became necessary due to the family being so wide spread. I do think doctors could be more informative. When a patient is in a nursing home I think monthly reports from doctors would be helpful. Also when the Nursing Home had their reviews it was during the day. Evening reviews would be more helpful."

 

 COMPILER COMMENTS:  SECTION I
 CAREGIVER DATA NOT USED SINCE IT DID NOT FIT  THE STUDY'S CRITERIA
There are many indications from these caregiver comments that primary caregiving very often has a lasting detrimental effect on the caregiver in a variety of reported areas:
 - loss of one's own health - loss of marital happiness
 - role reversal     - utter exhaustion
 - loss of goals/dreams  - loss of income/high expenses
 - job disruption   - time drain
 - loss of freedom
 - inability to care properly for one's own children
 - loss of loved one's "personhood"
 - isolation from others extending past death of the loved one  
 - need to deal with the unpredictability of Alzheimer's disease
   progression and its effects

 

Caregivers also express many feelings, such as:
 - loneliness and isolation - guilt
 - resentment    - depression
 - helplessness   - overburden
 - lack of understanding from other members of the family
 - total responsibility when that was not expected
 - frustration at one's inability to correct the problem

 

The caregiver's reported social support, in some cases, seemed to have a positive  or negative effect on how happy he/she was.  Others chose not to answer some questions, based on feelings of wanting to remember the good times, not the bad. Some caregivers responded to the stresses and losses placed upon them by doing something in a positive manner after the death of their loved one:
 - volunteerism
 - heading a support group for families of Alzheimer's victims
 - working toward goals from earlier life
 - expressions of gratitude for help received
 - feelings of satisfaction that "I did my best"

 

 SECTION II
 CAREGIVER DATA USED SINCE IT DID FIT THE STUDY'S CRITERIA

 Caregivers of Alzheimer's Disease patients come from all walks of life with very
diverse backgrounds, income levels, and family situations. Comments of some of
those respondent's whose situation did fit the study criteria are included below.

 

 COMMENTS OF CURRENT PRIMARY CAREGIVERS:
Respondent 79 year old male caring for spouse: "This questionnaire is quite hard to answer with any degree of accuracy. [What you felt unprepared for]: The constant repeating of questions! the arguing. [Additional stresses]: A daughter who has had open heart surgery, a hysterectomy, a second heart attack, sugar diabetes, no income. [Feel "mostly satisfied" with life]: I have good health, a lovely home, children and step children who seem to care (even though they do not show it by offering more help)."

 

Respondent middle-aged female caring for spouse: "He is just starting into the process. He is still able to do many things very well.  He does not seem to have a need for us to be in his world a lot of the time. He would rather listen to music or just be around. Not necessarily involved but be in the same room or the house.  He has not progressed to stages 8 & 9 yet. He has to be watched, but not constantly. The worry I have is that physically I will not be able to do all of these things -- for both him and the boys as he progresses [respondent reports four children ages 8 to 20, two of which are "severely disabled"]. [Feel unprepared for]: The constant and total care. The lifting and giving to him and our other children. Physical strength and stamina. It would be nice to know more now! [Additional stresses]: two children with disabilities, husbands quitting work to go on isability, lack of funds to pay all needs. ["Mostly satisfied" with life]: I enjoy what I do. The deterioration of my hubby has been really hard for both myself and our children."

 

Respondent female caring for 94 year old mother in minimum care facility: "We have a wonderful arrangement in the care facility where she now lives. [Felt unprepared for]: I fully expected mother to stay sharp and alert until she dropped in her tracks at 97 - like her mother did. ["Pleased" with life]: I have a good life with a sweet companion. I spend 1 to 2 hours a day visiting with/caring for my mother and the rest of the time I know she is lovingly and capably cared for at the retirement center where she lives.  We hire a college student to spend 1-2 hours per day with Mother 5 days a week. She takes Mother for rides, occasionally to lunch...It is very helpful. My sister and her husband handle Mother's financial, do the shopping and handling for the medications Mother takes, and for the Depends, etc., also do taxes."

 

Respondent female caring for 90 year old mother: [Feel unprepared for]: "Complete memory loss; helping with bathing, dressing, undressing, eating;
incontinence. [Wish I'd known]: how long it could last. My Mother asked to move in with us 10 years before she needed to do so. She has always let other people do for her when she could do for herself. [Add'tl stresses]: My husband was just called to be [a chruch leader]. I was just called to be [a teacher] in Sunday School -- very time consuming in study and preparation.  My Mother lives with us, is pretty good physically not good mentally. Needs someone to be with her every night. Can feed herself but not prepare meals. Can do bathing and bathroom functions by herself. She is not a happy person. She does not see the positive side of life. Frets because she can't continue doing her writing of family history. Wants someone else to continue what she started. At this point other people are not interested, mainly because she would be looking over your shoulder."

 

Respondent female caring for 81 year old spouse: [Felt unprepared for]: "Lack of communication -- lack of interest in anything that calls for thought or reason -- his inability to be taught -- to take directions, etc., etc., etc. [What you wish you'd known about caregiving]: NO.  Knowing it would happen would just prolong the despair. It's bad enough to meet the day without anticipating it. Nothing helps anyway. [Obviously, this respondent thought the question was, "do you wish you'd known about caregiving?"] [Additional stresses]: Losing my sight [Macular Degeneration] -- Fall (bad sidewalks), being homebound, no social life, loss of hobbies because of sight -- NO TRANSPORTATION!!!  ["Mostly dissatisfied" with life]: Facing reality - closed doors - no more dreams - lack of obvious options and opportunities - not enough income for future problems. [Additional comments]: Each situation seems to be unique, mine is different and many of your questions need to be qualified. Frustrating not to be able to give more accurate information. Filling out this form was quite depressing."

 

Respondent male caring for 81 year old spouse: [Feel unprepared for]: "to take care of her. When she should get worse. [Wish I'd known]: Had better insurance.
[Feel "Pleased" with life]: I've been happy.  [Add'tl comments]: Hard to get help."

 

Respondent female caring for 98 year old mother-in-law: [Changes in loved one first noticed]: "9 1/2 years ago when her husband died and we started caring for her. About 11 years ago her husband stated that she was seeing her parents who died 40 or 50 years ago.  She is like a baby now!  We'll keep her home as long as our health permits. [Felt unprepared for]: (All the work.) I have ...Home Health Care once a day and that helps me. She has a catheter which keeps her dry but she still wears Depends because of her [incontinent]. [Wish I'd known]: ...I couldn't realize what it would be like to have such a responsibility for such a long time. ["Pleased" with life]: We care for both mothers -- (My mother is more feeble and has to be transferred, and helping to do that is hardest of all). We use our mothers savings and income to hire someone to help for about 30 hours a week so that we do have some freedom for short periods. With that and [home health care] life is possible and we enjoy church and many things, but we aren't free!  My husband is an only child -- the only ones who help us work for money. We do have good friends but they are not available for what we need done. [Add'tl comments]: Some children can keep their parents at home if they are careful with their parents finances. We have hired several good people for $5 an hour and that gives us enough relief to make it. The hard part is keeping records for IRS and withholding and paying taxes. One help that makes it possible for us to do this is a very light dose of Chloral Hydrate each night, which gives our Mothers a good nights' rest and a long sleep after breakfast. It helps to make life bearable for them and for my husband and me too."

 

Respondent female caring for 84 year old sister: "No illusions -- I've done this before for other family members. [Add'tl stresses]: The illness of my spouse -- serious diabetes and problems related to high blood pressure. ["Mixed" feelings about life]: I think the good days outnumber the bad ones."

 

Respondent female caring for 81 year old mother: [Felt unprepared for]: The meanness of my mother, the way my family has washed its hands of her, the way my brother an sister have turned against me. [Wish I'd known]: how hard it was; the services available like Neighborhood House which is wonderful. ["Mixed" feelings about life]: My life is very difficult but I have many things to be grateful for also. [Additional comments]: I feel very trapped and awfully sad to see what was a wonderful woman become someone I don't like very well. My mother fights taking a bath, changing her dresses. She puts dishes away dirty and this is a very difficult situation to be in. It's very difficult to clean and cook. Mother is constantly at my elbow. I wish I could have a vacation."

 

Respondent female caring for 84 year old mother: [Felt unprepared for]: "Her anger -- not wanting others (even grandchildren) around; not being able to have my grandkids around without worry about reaction. [Additional stresses]: I have 9 children who always have a crisis. Too many to name. ["Terrible" feelings about life]: because of what I make it. I feel guilty. My main feeling in life. every time I turn around I feel guilty. And I get angry to much. I don't see my grand-children hardly at all. I sit in the basement and care for mom. That's my life. I love my mom, more than anything, but if I'm honest, sometimes I don't like her. I have no husband, I just feel sorry for myself and wallow in my own self pity and can't seem to pull out of it. This effects mom and others. You want truth, there's truth and I can't seem to get a hold on it. [Help from others]: Everyone has advice, very few follow it and help, Just tell you what you should do. There are some wonderful people out there, all you need to do is find them. [Add'tl comments]: I was by my husbands side for 8 weeks when he died. That was not as hard as this. Maybe that's because this is a now situation, you're pulled from every direction. You just don't know which direction to take. Everyone knows what you should do while they do their own thing. If there was only a way to make people more knowledgeable, but there just isn't. They all get disgusted with you and turn away and don't even know you are doing the very best you can."

 

 COMPILER COMMENTS SECTION II
 CAREGIVER DATA USED SINCE IT DID FIT THE STUDY'S CRITERIA
Some current caregivers seemed to be in deep despair and hopelessness because of their situation, yet others seemed to handle the problems quite well.
Some appeared to feel they had little time for the study, yet filled it out, perhaps as a way of dealing with feelings. Those early in the experience of caregiving seemed to have a more positive frame of mind -- not so overwhelmed.

 

 COMPILER COMMENTS: DIFFERENCES BETWEEN THE GROUPS
There was noted no significant differences between the groups, except that there
seemed to be a feeling of finality with those who were looking back upon the
experience; they seemed to be "analyzing" and trying to make sense of the
experience.

Some of those still in the midst of caregiving were more matter-of-fact; they didn't
seem to have the time, like they were "living one day at a time."