This is the account of one of my clients who found some comfort in writing about the problems she faced when dealing with her mother’s move into a frail care retirement home.
Geraldine’s Story – Dementia & Alzheimer’s
Geraldine, my mother, had become demented at 81. We think of people who have dementia as ones who become old and forget things. But the side effects can be any of the following: manic, frenzied, unreasonable and crazy. In Geraldine’s case, she still wanted to continue living in her own apartment and refused to believe that there was anything wrong with her. In reality she had simply lost the ability to take care of herself as well as her home. I had decided to take leave and travel from Toronto to place my mother in a home as now it had become obvious that she was no longer able to cope:
she was unable to budget;
there were threats of eviction from her rented apartment;
the electricity had been cut off when she had forgotten to pay the bill.
When I arrived I found that she had lost a lot of weight, was dressed in a dirty dressing gown and wearing shoes that were a size too small. The flat was dirty and had a fowl odor. There was little food in the home, her clothing had vanished and even worse there was no toilet paper, soap or towel in the bathroom. The once clean home and presentable Geraldine had become unkempt and dirty. She had an excuse for everything: the fridge was being defrosted; the clothes were being laundered; she was going shopping that morning – never mind that it was 1pm.
I suggested that I take her out for lunch, partly to feed her, but also to talk with her. Geraldine ordered the mixed grill, the largest meal on the menu, steak, a chop, bacon, sausages, tomato, mushrooms and chips, it took her half an hour to get through it but she did, she was starving. While she ate I explained that I had started receiving calls from her neighbours about Geraldine knocking on their doors late at night asking for food, a teabag or a cup of sugar and they indicated she was keeping bad company with a neighbour who they felt was taking advantage of her. I pointed out that her bank account was constantly overdrawn no matter how much money I placed in it. She forgot everything except her ATM number. I said that she would have to be placed in a home to protect her and keep her safe. Lies all lies, everyone was jealous of her, unfortunately that was what Geraldine has said all her life when the cracks began to show. She was not moving, she could pay for it all she had money, regrettably she did not as I supported my mother.
In truth, the problem had gone on longer than it should have. This was partly my fault because we lived in different cities and, frankly, on the phone she came across well. When confronted with the stories I had heard from family and neighbors, my mother insisted that her house was spotless, her clothes were clean, she always had food and everyone else was telling lies about her. The defining incident for us both was the car accident – I had to take responsibility now. Nobody knows what happened exactly, but my mother ended up in hospital with stitches in her head. Soon afterwards, those who knew her were saying that her behavior became more erratic. Everyone, including the doctors, said it was time for Geraldine to go into some type of home as she appeared to be increasingly out of control. I took their advice. I could not allow this situation to continue and had to take responsibility for the safety of my mother.
How many people slip through the cracks? Geraldine was born in 1931 and it was pretty obvious that she had some issues, the family was large and we moved around a lot, and had never really established living in a community. I was born during a time when children did not question adults. People generally turned a blind eye and just did not get involved when people thought you were a little odd. We were Catholic and the family was strict, and the friends that we did have just overlooked any odd behavior, but even I knew she was silly and sometimes unstable. I can recall that my mother had stupid ideas, was inconsistent all the time as she would not allow anyone to touch her clothing ever; she was always washing her hands and running hot water on to clean plates and cutlery before using to “sterilize” them. I remember that I frequently had to wash in cold water as my mother had used it all when bathing herself. She was always late and very lazy rarely wanting to cook preferring takeout or tins that just needed to be opened. The TV dinner was made for my mother. I taught myself to cook as my friend’s mother’s all cooked and baked and I loved sharing those meals in a real family setting. A lasting grudge is that she never baked me a cake on my birthday; I even wondered if she actually liked me, she just needed me to pay the bills.
At the hospital Geraldine met with the doctors and a consulting psychologist who said that dementia/Alzheimer’s had already been diagnosed and confirmed. For Geraldine, going into a home with full-time care was really the only option. In addition it needed to be done as soon as possible.
That was easier said than done. A home had to be found, papers and applications needed filling in, and a power of attorney had to be arranged. Every objective was met with opposition from my mother who reacted like a bad-tempered child fighting every inch of the way. The only thing that kept me from faltering was the fact that all the medical staff and social workers who had met my mother said the decline was now too great to ignore.
Finding a Home
I did my research and found a home that had moderate, full and frail care. I hoped that with controlled medication, three meals a day and a routine, the new environment would enable my mother to live comfortably. Touring the home I found all the residents friendly and well cared for. There was a library, two TV rooms, a dining room (that did not smell of stale food), laundry facilities, a hair dresser and a tuck shop. My mother hated it: it was full of old people, she was young and she was going to run away the first chance she got. When I told my friends, while commiserating, they laughed and said Geraldine sounded like an unruly teenager who was not getting her way.
I decided the home was a good fit for my mother. In fact, I thought that, when I would need a home, I would not mind living there. So feeling happier, I met with Gloria the administrator. She gave me the applications and advised that Geraldine would have to come in for an assessment with the medical staff and social worker. This was to determine the correct care that Geraldine required.
I took my mother to meet the staff where they confirmed the medical assessment. Then they asked about her daily routine and how she spent her time, occasionally asking me for confirmation. Did she have family? What where their names? Where did she live? What were her hobbies? They finally asked her for the day’s date – the 18th, Geraldine said proudly. What month? October. What year? 1990. (Correct answer was 2013 November 19). Oh dear, what a wakeup call.
At that point they said Geraldine would have to go into frail care. More money I thought, feeling bad for both of us. Now most of the residents in frail care were physically in poor health. But Geraldine was quite active not needing any aids, she was not incontinent and she had recovered physically well from the car accident. The problem was that Geraldine went out all the time, especially at night. In effect she is a wanderer. Carolina told me that once an individual has been diagnosed with dementia or Alzheimer’s in Canada, it is reported to the RCMP who place that person onto a “Wandering” file. In most cases the wanderer goes to the same place and the police pick them up there. Unfortunately many go out in nightgown/pajamas without shoes in extreme weather and perish. Regrettably, the home advised that Geraldine would have to go into frail care at another home as they would not be able to place her at their home. There were just too many exits at their residence that were unguarded. They suggested a more secure home which was a lock down. I was advised that the disease would only get worse and that Geraldine should be placed properly now and not later. I sat there while it all sank in. She was that bad but I was still unsure. But they were the people who dealt with this on a regular basis and I was not. The amazing thing was that Geraldine just sat there not participating or saying anything. Reluctant to move, I realized I was in shock. I needed confirmation that they would not take my mother. We won’t, they replied. If they wouldn’t, then who would? Fortunately, the social worker recommended another residence in the city which was more suitable for my mother.
At this point feeling overwhelmed and with a tight timeline I was glad that I had employed some help. Carolina, who manages moves for seniors, could help me with my mother, helping her ease into her new home.
The Second Home
I took Geraldine with me to the appointment. As backup Carolina came too, which was just as well because as soon as we arrived Geraldine became agitated and said she was not moving in as it was too far from the city center. Carolina bought some snacks and I left her eating a bag of chips in reception and went on the tour with Sister Anne, the matron of the residence. The room was bright and sunny with an en-suite bathroom. Most importantly it was available. Anne was kind but firm, and advised that “the Geraldine” I knew was not the person she once was, she was “leaving” mentally. Anne showed me the floor where Geraldine would spend her days when the dementia became too bad. This ward was full of people who were shells, empty of who they once had been, little movement sitting in a row with vacant bland stares. I could not wait to leave.
Anne advised me about what Geraldine could bring in and what she could not. There are different allowances for different types of care. There were more forms to be filled in, another interview and confirmation that payment would be assured. I also wanted additional assurance that this was indeed the most suitable home for Geraldine. It was. Then confirmed Geraldine was to move in on Thursday.
In truth there was little to move but Carolina took care of it all. Geraldine was a gypsy, and never really settled in one place for too long. She had never bought a home, always preferring to rent or live with relatives. The total load consisted of 3 practically empty suitcases, one large armchair, one dining chair, three small side tables and a chest of drawers. On the plus side, haulage took only one trip. We were able to load everything in the car with the chest of drawers and armchair to follow on in my cousin’s truck. I was unable to determine what had happened to all the clothes that my mother owned or the new clothes, food and toiletries that I had purchased when I arrived. According to neighbours, she sold them for cigarettes to a woman who lived in the building. When I asked her about where the items had gone she was her usual evasive self. This only strengthened my resolve to move her as I saw my hard earned money being thrown away.
All the way to the home, Geraldine complained, and by the time we arrived she was in full verbal assault. Fortunately Carolina had arranged for Geraldine to check in just before lunch and had called ahead to confirm that we would be arriving soon. Upon our arrival, several of the staff were already at the entrance. They helped Geraldine out of the car, hugging and saying they were so glad she was coming to live with them. With such kindness Geraldine was distracted and forgot about her complaints. While we unloaded the vehicles and moved Geraldine’s goods and chattels to her room, Anne escorted Geraldine into the dining room and sat her at a table with a sweet lady named Nelly.
While my mother had lunch I met again with Anne in her office. Meanwhile Carolina was in Geraldine’s room cleaning and arranging my mother’s furniture and belongings. When she had finished it all looked wonderful and Geraldine was genuinely pleased. We settled her in and stayed for the afternoon. Carolina suggested we take her down to dinner and say goodbye.
The next morning I received a call from Anne. There had been an incident overnight: Geraldine had tried to leave and, when told she could not, had run through the residence screaming. Dodging the staff, she got past a security door and ran outside into the garden. She had a fall though she was not badly injured. Three staff members managed to get her back inside after a fight. The staff tried for some time to get her to take a sedative to calm her down, but she refused saying they were all trying to poison her. Eventually they succeeded and she fell asleep in the TV room watched by staff.
When I arrived the next morning I was given the incident report to read. I was mortified that she could cause so much trouble. All the other residents seemed content, the staff were great, there were lots of activities and Geraldine was eating everything that they gave and more.
When I went up to see her I asked her if she remembered the previous evening. She said that she had watched TV and gone to bed. I asked if she remembered going into the garden. She said that she just wanted some air. And what about trying to leave? Yes, she had to get her shopping. And what about shouting and fighting? Once again these were more lies. We talked and I explained again about why she could not live by herself. When it was time for me to leave, Geraldine tried to go with me saying that she was going home, she had laundry, shopping and banking to do and promised to return in a hour. I reminded her that she was in her new home. Not able to get her own way, my mother then told me that she could not stand me, that she had always hated me and that no one could keep her locked up as there were laws against that. Meanwhile the staff had been keeping an eye on us and led Geraldine gently away. With a heavy heart I drove away, not understanding anything.
The next morning brought new problems. After dinner the previous evening Geraldine tried to run away again. This time she opened a window in the TV room, climbed out onto the ledge and over a low barrier onto a flat roof five feet below. Once again the staff had to chase after her. This meant forcing her against her will up off the roof, over the barrier and through the window back into the TV lounge. Again for everyone’s safety she had to be medicated.
I was advised that a memo had to be sent to head office as the security of the home had been compromised and would have to be re-evaluated as they had never had an episode like this before. In addition they wanted to send Geraldine to hospital for observation. I was called to the home where I found Geraldine sleeping in the TV room monitored by staff.
One of the nursing staff accompanied me to the hospital where Geraldine was admitted to the general ward. Geraldine stayed in hospital three days where her dementia/Alzheimer’s was confirmed. The doctors also diagnosed an anxiety/displacement disorder for which an anti-depressant was prescribed. They also said that she was dehydrated and had a kidney infection. These were also easily treated.
Carolina did tell me that some people with Alzheimer’s do have problems at night and they become restless, a condition called “sundowning”. It appears that confusion begins when natural daylight fades and shadows appear. The move had thrown Geraldine’s daily schedule off kilter. But now in the home there was a good routine with activities that would help with confusion. Slowly I was beginning to comprehend exactly what kind of toll dementia can take on everyone who has contact.
I had dreaded going to pick my mother up and took Carolina with me. When we arrived at the ward Geraldine was awake and sitting up. She was pleased to see us and did not comment on the new clothes I had bought for her. I was not sure what to say but Carolina just took over: she told Geraldine how well she looked and commiserated with her about the kidney infection on top of the move and the car crash. Then she suggested that we take her home so Geraldine could have a nice lunch. Geraldine smiled and said she was hungry and ready for lunch. During the car ride home they chatted about the weather and what had she eaten in hospital.
At the home Carolina took Geraldine in to lunch while I went to see Anne. She advised me what the doctors had said and handed over the medication they had prescribed with a follow up appointment for the next month. I said I could not take her having to get back home to my family and work. She said that that would not be a problem as their staff could do that. She also arranged for Geraldine to move into special care to keep an eye on her for a few days while she resettled. Once stable they would see about moving her back to her room.
We stayed for the afternoon. The residents were genuinely pleased to see Geraldine which delighted her. Surprisingly they were also pleased to see Carolina and the people that I thought were so empty do respond when given the opportunity I realized at that point that they have few visitors. Geraldine however was more engaged in the soap opera on TV and the chocolate bar than my company, but that was nothing new. She was still asking the same questions: had Robert finished school, what was he studying, what about James. When I left my mother did not ask to leave with me.
Each day after that improved. Now she liked sitting in the lounge with the others, she had had her hair coloured and cut and received many compliments for it. She was starting to settle into the daily routine and her sense of humour had returned. I believed that she was beginning to feel safe in the home. It was only at night that there were still problems. Geraldine had taken to sleeping in the TV room at night probably because the staff was around and, as such Carolina said she felt more secure.
By the time I left my mother still had not spent a night in her new room. I think I had more angst when I said that I had to leave to return home on my last day. I said that I would be telephoning and that I would send her emails that the staff would read to her. I would also return to visit. With no emotion, she said goodbye and went off to have dinner and sit with her new friends, never looking back.