This all started when the phone rang January 2002. But if the truth be known, it began long before that critical call. Mum and I had watched a movie with Joanne Woodward in it about a professor who developed Alzheimers, and for whatever reason, mum and I would joke about some of the things Joanne got up to in the movie, embarrassing things, like wander naked into a water fountain.
It was after this movie mum would ask “You would tell me if I did anything as embarrassing as that… wouldn’t you? The serious tone in her question gave me some insight as to her fear of this dreaded disease. Yet still somehow the both of us would turn this into a giggle….I’d say…. “You wandering around naked last night mum and mum would say “I was not…..you silly girl! We would both laugh, It was a joke between us….in serious moments mum would ask “You would tell me if I did anything like that? I’d reassure her I would and the subject would shift.
Somehow Alzheimer’s had managed to creep into our conversations without me even realising…….mum would often refer to Alzheimer’s if she had misplaced her keys or purse or something…….over time I began to question if this “thing” that started as a joke between us was a “real” thing. Mum’s mind I suspect had already felt the shift within herself and I eventually said “if you are worried mum, we can go have a talk to the doctor……she seemed relieved in a way that’s hard to explain. It was a dreadful experience and mum was sent for a CT scan….they wouldn’t allow me in with her.
Mum was claustrophobic and that machine closing down on her petrified her. I waited outside feeling I had failed her for not kicking up a fuss and making them bend the rules to allow me in to just be of some comfort, but mum wasn’t afforded that. I’m certain it would be different now, or perhaps I would? The doctor told us that there was some atrophy in the brain, and that I should find puzzles for mum to do and basically that was it, no support was offered. It was a mind numbing piece of news and yet we walked home with this new information quietly tucked away in our minds.
For the following years we cared for mum at home, piece by piece this disease would take away mum’s thought process. A lapse in speech, in mum’s peace of mind, it appeared to intrude into most thought processes, but not always. It would come and go, it never did take her sense of humour, sometimes a small drive in the car would tangle the threads that we all know to be true and said. We could return from a short drive and mum would say "this isn’t our house, this isn’t where I live", she believed we drove in the wrong driveway.
We found a way around that, by driving out again around the block, long enough to alter that particular thought process, and sure enough, nine out of ten times this worked. We had good neighbours, they would assist when mum would wander off. Dad would fall asleep often, and a neighbour would call and let me know she saw mum walking by on her own. As the disease advanced, we had a “case manager” to arrange home help, which was really a “minder”, it afforded us a window of time to do a few of our own things…while I lived next door it simply wasn’t enough supervision, mum really needed 24 hour care.
My brother had isolated the switch on the outside electricity box so the stove inside could not be turned on, as we had some near “misses”. It was now about keeping mum safe as possible. I could hear dad raising his voice from next door, when it all got too much for him to handle and that would aggravate the situation. My brother moved back home to be a presence, all four of us siblings worked at keeping mum in her home. It was also interesting at what it did to the family as a “whole” it kind of tore us apart in ways I would have never imagined, things I hoped mum was past recognising, but deep down I knew mum knew, and that made it more difficult.
Mum had lived her life for her family, she was not ambitious, she was a determined, strong woman with a good heart, a sense of humour and a very good cook.
So when I took that call…we were given 3 hours to decide about mum being put into full time care (it bugs me to write that word “CARE”) or missing the opportunity until another place became available and no one could give us any time frames. The whole situation made me sick to my stomach. I was reminded that mum would have professional care (that only served to make me feel inadequate) I wasn’t a nurse and perhaps it was time to think that this was important? Mum was well in herself. A nurse would take “proper” care of mum, and she deserved that.
My brother was struggling with the everyday reality of what was mum’s illness and it was true that I thought he wouldn’t be the right person to assist. He did have a gentleness to his nature and I thought at the time I can’t see this working…..his intentions were honourable of course and sometimes people surprise us in ways we cannot imagine. We all decided that given the situation it was the only direction to move. The illness had crept into our relationship as siblings. Dad was defeated by the enormity of the illness, whatever we decided, dad would go along with, we were fortunate like that, the disease didn’t separate us, that was to come later. We had no idea of the division this would cause.
We had learnt much about the disease, Alzheimer’s Australia had information evenings which were helpful. It felt we were all on the same page. I really did believe we acted together, the common bond being mum’s well-being.
I remember, viewing the room, that was to be mum’s new housing situation, and what remains clear in my mind is the woman showing us around telling us, “they would take care of mum now”…. I believed her, how stupid could I be.She didn’t appear to be anything but genuine, she was friendly and polite… Still I felt gutted, a sinking feeling I could not shake. That feeling persisted until the end of this nightmare journey.
I felt I failed mum if I 'd only been a nurse, perhaps that would have saved her. She wouldn’t have to go into a facility?? I was fooling myself, I had 4 children, a partner that was working shifts, I was on my own parenting wise much of the time and then I thought I could also care for mum? We didn’t even have a spare room.
I couldn’t do it on my own and my partner reminded me that was the case. I liked that it was a simple equation for him, mine was laden with emotion. The next few days I spent getting mum’s clothes labelled, what she was taking with her, and then I had to tell the children. That was devastating, my youngest son just collapsed at my feet when I explained about Nana. I had no words to ease the pain etched in his eyes and his little sister just folded up near him sobbing quietly together……
My brother took photographs of mum’s last day at home, that felt insulting to me, yet he seemed happy. It was 3 days before I would “visit” mum, even that felt foreign, visit, it was such a formal word. While I’d been caring for mum I’d "pop" in or mum would most likely be in our house, but it never felt like a visit.
When I first visited mum, 3 days after her leaving our family, and her family home, mum was in a wheelchair, it was such a shock. I asked what happened, but nobody knew. It was difficult asking mum, as much of what mum said was similar to a small child in the sense that I could understand what mum needed, but detailed information wasn’t possible. Mum could clearly think for herself. It was the delivery that was tricky.
Mum had swelling in her knee and pain in her hip from what? Staff couldn’t tell us. An x-ray showed no broken bones, I felt that no x-ray would have been given if family didn’t ask; they didn’t even notice mum was in pain. We were all concerned for mum’s well-being. So we arranged that a family member be there everyday. Dad and I would cover most days and others would come when possible.
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