This is the story of one caregiver’s personal journey with her husband from onset of dementia through to his move into private care, then Long Term Care. It has been adapted from the presentation, “A Caregiver’s Story” given several times as part of the “Care Essential” learning series offered through the Alzheimer Society of Ottawa and Renfrew County (ASORC).
Change of Plans (Onset-Discovery) The New Reality Asking for and accepting Help Moving into Assisted Living
In 2000 my husband Bern and I moved into the house we had designed and built together. It was our retirement home, built for us to enjoy and to grow old together in. In 2001 I retired and we prepared to start the next phase of our life; playing, hosting friends and family and traveling the world. Across the spring and summer of 2002 we had a great time golfing three times a week with three different couples, gardening, biking and just enjoying our time together. But life is not always what you planned. At the end of the summer of 2002 Bern had a stroke and our life together began to change in ways we could never have imagined nor anticipated.
The Labour Day in September was an end of season golf party which we attended with friends. At the end of the evening Bern became slightly disoriented and I decided it was time to go home. I just thought he had too much to drink so I drove. He was unusually quiet in the car and once we were home I had to help him across the hallway to the stairs because for some reason he kept veering to the right.
The next day, Sunday, he complained of broken up vision he never said blurry vision, but he had had this before, so we did not think too much about it. As planned for that day, his son picked him up for his grandson’s hockey practice. His son was going to be the team coach and Bern was to be the team manager; a great family activity they could all share. On arriving home from the hockey practice his vision was still broken up and I began to worry as previously when this had happened it usually cleared within an hour or so. In addition, he was more tired than normal.
We were scheduled to go to a family gathering on Labour Day Monday but he did not feel well enough and thought perhaps he should see the doctor. As it was a long weekend, I called the after hours clinic and got an appointment. The doctor briefly examined him and felt sure Bern had had a stroke. He suggested that if we had the time we should go to emergency at the hospital. Once at the hospital, after many tests including a CAT scan, the neurologist confirmed that he had indeed had a stroke. As it turned out there was evidence of a previous undiagnosed stroke on the CAT scan. Arrangements were made for many more tests the following week. However, at the time we were relieved that the only effect of the stroke appeared to be that he had lost his peripheral vision in the lower left quadrant in both eyes. This vision loss to the left, explained his tendency to go right when walking, it was the side he could see.
In hindsight, the signs of stroke were there even if I had been aware of them. At the golf party Bern could not find his cutlery when he started to eat his dessert. When he asked for some his seat-mates just handed him the cutlery that was in front of him on the left side. After the diagnosis we all started to put certain events into context. His poker buddies related how in the previous February they suspected that something might be wrong when he could not play the game one evening, a fact he also reported to me. We also had noticed that in the spring of 2002 he had trouble speaking or word finding. So, I suspect that the first stroke was probably around the time of that poker game.
That fall, 2002, however, after the initial diagnosis of the stroke all seemed well. He regained his strength, was eager to drive again and wanted to learn about strokes. By the end of October however, abut two months after his stoke, his loss of memory was becoming scary. This change occurred almost overnight. Suddenly he could no longer remember anyone’s phone number or what we were going to be doing. I was worried, I was scared and I didn’t know what to do, I didn’t know what was wrong. Fortunately, we had our son and his wife over for dinner and I confided in our daughter-in-law, who is a social worker. She suggested, I should tell the family doctor about my concerns. I had a previously scheduled Doctor’s appointment for myself and Bern came along to accompany me. After relating my concerns to the doctor, it did not take him long to tell me that my problems could wait and he would see Bern immediately. He did testing on Bern that day using the Mini Mental Status Exam (MMSE). Following this testing our family doctor referred us to the Memory Disorder Clinic at Elizabeth Bruyere Centre. From that point it took another full year, until 17 December 2003 before we had an official diagnosis of Vascular Dementia, probably mixed with Alzheimer’s. Merry Christmas!
The Neurologist from the Memory Disorder Clinic referred us to the Alzheimer’s Society of Ottawa and Renfrew County (ASORC) for the “First Link” program and suggested we read The Nun’s Study – Aging with Grace. The ASORC Workshop we attended in January 2004 was our first step along our journey to a new reality. It was here that I learned that approximately thirty percent of stroke survivors go on to develop dementia within two to three months of the stroke. My husband was classic in that regard.
After the diagnosis and participating in the First Link program, I tried to learn as much as I could about this disease. Nothing was going to make this disease go away, so we had to learn how to manage it and not let it take us over. The ASORC has a monthly Education Workshop, which I attended for a couple of years. I also started attending the ASORC’s Wives Support Group, which has an hour long education component and a discussion period. We attended ASORC’s monthly Tuesday “Koffee Klatch” for quite a while which is just a friendship group as well as their “Morning for You” program where the persons with dementia and the caregivers have separate sessions. For about two and a half years we attended the “Morning for You” program until the facilitators, realizing that Bern was having a great deal of difficulty expressing himself, invited Bern to a half day “Day Program” once a month while I attended a support group. I also found that the ASORC’s “Care Essentials” program for caregiver’s provided me more detailed information on the progression of the disease.
We were very fortunate in that we made friends at the First Link series and now almost seven years later we still keep in contact and socialize. We have done breakfast, lunch, coffee, theatre, hockey games.
Using creativity Imagination and humour – During this period of learning and research about Alzheimer’s and dementia some important things I learned are: that leaving lights on, not flushing the toilet, leaving keys in the door, buying things on the phone with our Master Card and repeatedly asking me what we are doing were not his fault; he was not doing them intentionally. He was not able to correct these behaviours so there was no sense getting angry or frustrated. It was just a fact in our new reality. When these things occurred I just repeated my mantra “It is not his fault, it is the disease”.
You learn not to fight the situation and just accept the new reality. Yes, the lights will get left on. At a certain point I couldn’t even ask my husband to turn them off as he did not know how to so no need to get frustrated, just turn them off. The same goes for toilets. Just flush the toilet and buy some air freshener. How about lost keys? For quite a while I just checked any outside doors at night or discreetly checked his pockets for keys. I now have quite a stash of house keys as he insisted we get a new one made every time we lost one. After he had lost the keys once too often I just stopped giving him keys.
When he started using the Master Card inappropriately I got a new Master Card with a new number and cancelled our old card. I took his bank card out of his wallet and when he noticed he did not have it I assured him I checked our bank account on line regularly and there has been no unusual activity on it.
I used to give Bern small tasks to do so he would feel he was helping me but even simple tasks became too difficult. The time I asked him to get me something from the basement, an onion he turned the furnace off, fortunately I figured that one out the next morning, it was November and the house was getting cold. At that point I realized then I could no longer ask him to get me anything from the basement.
Dressing became difficult. At first I laid everything out on the bed to cue him but eventually I had to stay with him when he was dressing, as he could get things on backwards such as putting his long johns on before his shorts. I just kept watch as he dressed and use gentle persuasion when required. Another thing that I have found is to keep a sense of humour. Once, he refused to put on his shorts and long johns so I let him have his way. It didn’t take long before he was complaining that his pants were too large and were falling down. When he realized what was wrong, we laughed then I went and got the rest of his clothes and he put them on right in the kitchen. You have to be able to see the humour in situations.
Medications – After the official diagnosis in December 2003 Bern was started on “Exelon”, one of the three pills (the others being Reminyl and Aricept) used to slow the progression of early Alzheimer’s. Since his diagnosis he has, at various times, been on all the current medications for Alzheimer’s; Exelon, Reminyl, Aricept, Memantine (the new mid-stage drug), and finally on Exelon again. Despite these treatment options his MMSE scores continued to consistently plummet. With some medications he had some stomach problems and others were changed because they simply were not halting the progress of his disease, as measured by the MMSE. At a later stage we also had to have medication prescribed for behavourial issues and insomnia.
Behaviour Issues – By the fall of 2005, approximately a year and half after the official diagnosis, the behavourial issues Bern was exhibiting such as yelling, swearing and threatening me could not be ignored, so I called the Memory Disorder Clinic and explained the situation. They referred us to Geriatric Psychiatric Unit at Elizabeth Bruyere. Fortunately for me, we had an appointment with the Memory Disorder Clinic already booked so I had the Neurologist tell my husband about the upcoming appointment on the behavioural issue thus avoiding a confrontation. Bern was started on Resperidone. It made an almost instant difference in his behaviour and my life became much more peaceful. Following this appointment the behavioural problems would increase from time to time to a level that I could not ignore but the Geriatric Psychologist allowed me with a phone call to increase his medication and get a new prescription from our family doctor on our next visit.
In the summer of 2006, during a routine visit to our family doctor he told me I looked awful. I informed him it was because I was not able to sleep through the night as Bern would wake several times a night. The doctor suggested that Bern be given something for sleeping. As we had a wedding in the family and I had a respite period booked in September 2006 it took me a couple more months to take action on this advice. Finally, in October I called the Geriatric Psychologist and we had another appointment. Bern was started on Trazadone to help him sleep. Since then both the Resperidone for behaviour and the Trazadone for sleeping have been increased. As long as Bern was at home these increases were initiated by me.
I also used the services of the Family Support and Education Staff of the ASORC, they are great listeners! It was after one such session that I finally made the call about the behavioural issues and was given much needed support that I must do something about them.
Let me tell you my philosophy of our life since my husband was diagnosed with dementia. I believe you have to live with the reality of the disease, it is not going to go away, it is not going to get better and it is going to get progressively worse. So very early in the process, I decided that we would do something fun every day. I wanted my husband’s life to be joyous and for him to relish life to the maximum. It may have just been lunch at Tim Horton’s; it may have been a walk outside; coffee with a friend; darts in the basement but each day I planned to do something fun with him. I also have read to him since he had his stroke, when his vision problem made it difficult for him to read. It started as the sports pages from the paper when the Senators won, progressing to books such as “Thunder and Lightening” –the hockey player Phil Esposito’s story, the Da Vinci Code, Angels and Demons, many James Patterson’s books, and True Canadian Amazing Stories. He didn’t always follow the story, but I think he liked listening to my voice. During Valentines week, I dug out several old valentines we had given each other and read them to him. We have laughed and we have cried as I have read to him.
One of the first things I learned as a caregiver was “how to say – YES”. When family or friends asked if they could help, I may not have anything in mind but I always said yes. Whenever I had someone for lunch or supper and they asked if they could bring something I always said, yes – dessert, salad, etc. Also, when friends offered to help, I let them know what would be helpful to me. I suggested they could take my husband to a movie, out for coffee or just visit. This allowed me to just stay at home and relax or to go out for groceries.
It is important to remember that you as the caregiver are not superman….you cannot do everything and if you do not take care of yourself you are of no use to your loved one. As Bern’s disease progressed, I knew that I needed more time to myself to look after us and our home, so the Community Care Access Centre came to our rescue and convinced him that having someone to come into our home once a week to do stimulating activities with him would be a good thing. For about six months we had a Personnel Support Worker (PSW) come in Thursday afternoons for three hours which allowed me to get out shopping or to have some time for myself. Some days I just took a book to Tim Horton’s and had a coffee and read.
Also friends were an invaluable source of help to me. When Bern was just attending a day program once a week and a PSW was coming in for three hours a week, I hired a friend privately for three hours a week, or to stay with him if I had an evening activity I wanted to go to. We were fortunate to have friends that I could leave Bern with whenever I had to go out alone such as the ASORC’s Wives Support Group. Then in the fall of 2006, I approached these friends about taking Bern once a week, but only if they let me pay them. Once, I convince them that the money was from Veteran’s Affairs and not really coming out of our pocket they agreed. They took him weekly for an afternoon and I was able to pay them, it was a win/win situation. They also took him if I want a Saturday lunch with a girlfriend. So the routine became that our friend took Bern for a coffee then back to their home for a movie. He came and picked him up, Bern was happy he was going out, and most often didn’t know or even think about what I might be doing. That lasted a year until Bern went into care, what a blessing it was for me!
Another friend of my husband’s took him to a movie at least once a month, using the “Access 2 Entertainment” program which is for disabled persons who are not able to go to a movie by themselves. The card allows the person accompanying the disabled person to get into the movie for free. So Bill, whose spouse doesn’t particularly like going to movies, came and picked up my husband for a movie afternoon. I gave him the card and a little wallet I had with $20.00 in it, for the movie, popcorn and a coffee afterwards and everybody was happy, especially me, it gave me about three hours on my own and Bill got into the movie for free.
Adventures with Day Programs, Respite Stays and Personal Care Workers.
I had to remind myself continually that as dementia had impaired Bern’s judgment, it was my decisions to have Bern participate in the day programs, to have companions come to spend time with him or to use respite. These decisions needed to be taken as much for me as for Bern. It was me as the caregiver who needed the break. In the case of respite care, I made the arrangements, then usually told or reminded Bern a few days before as the respite. My husband had four such respite stays all at the same facility.
While attending the First Steps program, Bern showed an interest in participating in a “Day Program”. Pursuing this option led us to our relationship with the CCAC. Our first attempt at joining a day program was unsuccessful because Bern decided he did not want to go. As he was managing fairly well and I could still leave him at home alone for short periods I did not push the issue. However, at our next meeting with CCAC he decided he would give it another try. He selected the program himself and was able starting just before Christmas. After the second week however, he flatly stated that he was “not going back!” For the first time I had to use all my imagination and powers of persuasion to bring him around and try another program. As I couldn’t reach our Case Manager from CCAC, I phoned the program staff directly. They had also realized he was not a good fit for that particular day, but fortunately they had an opening for the Tuesday program. This worked well as that day was an all men group with male volunteers. So succumbing to my powers of persuasion he agreed to go back.
It was during this period when Bern was going to his day program that I realized that I could no longer tell him the truth of what I was doing when I was not with him. He had asked one day what I was doing when he was at the day program and I told him I was going out to lunch with a friend. He not surprisingly wanted to go with me instead of attending his program; an action that would have defeated the purpose of the day program in giving me break. Lesson learned – from that point on as far as he was concerned I was doing nothing on the days he went to his program! A fiblet yes, but a necessary one.
During this period we tried using a personnel support worker (PSW) for a half day. This worked okay but it was never a really good fit for Bern. It did not take long for him to realize that when the PSW came, I went out. So we cancelled that arrangement but put his name in for a second day program instead. Luckily a Wednesday opening became available at the program he was currently attending, so I took it. Now to make it work. Rather than trying to persuade him to attend myself I copped out and left it to the program staff to convince him they needed him on Wednesdays to help out with the other attendees– another little fiblet. This worked for a while, but he never really liked the Wednesday program because there were different volunteers and different participants. After two months, I gave up. The weekly battles were not worth it.
Fortunately in November 2006 space became available at another program but it was about three weeks before he accepted this new routine. The following February, 2007 he started attending a second day in the same program. This change again was not easy and we had to work on it – I had to be very persistent. We were now up to three days in two different programs. Organizing our days required all my skills as a logistician but it made a real difference to our lives even with the occasional battles. One day, after we had our morning coffee, I told him it was time to get shaved and showered for the day ahead. As usual he wanted to know why and what he was doing. When I told him it was the day for his program, he flat out said he was not going. I knew that I could not give into him and insisted stating that I was putting his razor out for him and laying his clothes out. Eventually, after I had been given a few new names he came upstairs and got ready. I remember we had a very quiet breakfast and the drive that day was very quiet! By the end of the day however, when I picked him up he was fine; it was as if the morning battle had not occurred.
As Bern’s ability to care for himself and my capacity to look after him was fully taxed I looked for more help. I called our Case Manager at the Community Care Access Centre for help with bathing. In 2007 I realized that my husband was using neither soap nor a washcloth when having a bath or shower. For a period he let me bath him or help him in the shower but after about six weeks this became too difficult for me physically so, I called our Case Manager. Within a week we had a PSW come in twice a week for an hour each time. If I were to have asked Bern if he wanted someone to help him bath, he would say he was fine and he could bath himself. At this stage of the disease progression he was not aware that he no longer knew how to bath himself. All was not smooth, we had a few loud words said, but my persistence paid off. After a week or so, I was able to get the same woman in both days vice the man, whom he did not like, and it became routine. The PSW helped him shave, bath in the tub, get dressed, brush his teeth and comb his hair. The other days, our shower stall is such that I could stand to the side and wash him. Then the time came, which even this was too much so I hired additional support privately from the same agency to come in the other three days of the week to help my husband for a total of five days a week. After a few months of this our Case Manager approved the additional hours for the PSW and then that summer I privately arranged for weekend coverage. When I told our Case Manager of this she covered this time as well. At the end we received seven hours of home care each week.
As an aside due to my husband’s previous Military service he received a Disability Pension. This being the case, we received additional assistance from the Department of Veterans Affairs (DVA). They covered some of the day program costs and we received assistance for other household tasks under the Veterans Independence Program. DVA also assessed the need for care in the home and the need for an Attendant Allowance which allowed me to hire privately for any additional support required in excess of that provided through Community Care Access Centre.
Following up on a suggestion of the Alzheimer’s Society I kept a diary of what my days were really like. We all know that we tend to forget “bad or unpleasant” things that occur. A diary or writing things down sort of puts them into your memory bank. I was advised that this becomes really important once your loved one goes into care. The diary is there for the times you visit your loved one and question your decision to place him/her in care. He/she seems perfectly normal when you go to visit for a couple of hours or when it is lonely and you miss your loved one not being at home with you, you feel guilty and think why I have I done this to him/her. These are the times I needed to refer my diary or at least think about what my life was like when Bern was still at home with me. I know I just have to remember things like the intrusion of strangers coming into our home every morning, the caregivers required or my husband’s habits of getting up during the night or him sleeping in the middle of the bed and me on the floor.
I was able to get my husband into an “Assisted Living Centre” at a private retirement residence the beginning of October 2007. Our social worker had told me the previous May that in her opinion the time had come when I could no longer care for Bern in our home both because my personal resources where fully taxed and because I could not provide the level of stimulation that he required. My husband had been on the Long Term Care list (for my three choices) through our Community Care Access Centre Case Manger since December 2006 but his name had not yet reached the top on any of them. She suggested a couple of private retirement residences and I checked them out as well as probably six or seven others.
It was very easy to get into a private residence; however the better ones still had waiting lists. Again, I was persistent and I kept calling the one I choose every couple of weeks, finally at the end of September a room became available. We did a six week respite/trial period to see if it would work for both of us. At first, I could not even think about my husband not coming home again. Life at times provides fortuitous timings. After the second weekend of this trial period, I went away for a weekend with some girl friends and driving back on the 401 by myself I finally admitted to myself that I just could no longer care for him at home. Just to drive home this point, the following weekend, I ended up in emergency and was hospitalized for five days. That is when the family knew I had made the correct decision for what would have happened if Bern had still been at home.
After I recovered, I arranged him to become a full-time resident in the private care facility. To make him comfortable I moved some of our own furniture to his room, got him his own TV, put pictures up on the walls and brought in his own bedding. He fit in very well; he took part in all the activities and had no problem with the staff assisting him with his personal care. I have to believe that this successful transition was made easier because he attended day programs so was used to doing activities with others. We had care workers come into the home to assist with his personal needs and he had been in respite care from time to time; all good training for this final stage.
In June 2008 my husband’s name finally came up on one of the Long Term Care choices I had made earlier. Fortunately, he came to the top of the list on the very day that he had an altercation with another resident in the private care facility and had to be relocated. If his name had not come up we would have been on an emergency placement list. His name had been on the waiting list for approximately a year and a half at this point, underlying the need to make these selections earlier than later. Eight months later I was able to move him to The Bungalows at the Peter D Clark Centre, my first choice for Long Term Care, which is closer to our home. After about sixteen months in The Bungalows he was moved to the main building at Peter D Clark Centre as he now required a higher level of care and since he had been in a wheelchair for about eight months he was no longer at risk for wandering.
Bern passed away peacefully on October 5th, 2010 in his room with three of his four children and me at his bedside on Pine East at Peter D Clark Centre. I truly believe being at the Peter D Clark Centre he had the best care I could have possibly provided for him.