12th May 2022 For anyone who has not had any connection to someone with Alzheimer’s disease, you are so, so very lucky. Before my mother was diagnosed with it, like most people I had assumed it was just a really bad case of memory loss, but found out at first hand there is such a lot more to it than that.
A poem cropped up on my Facebook feed the other day that touched a chord within me. It went:
Don’t ask me to remember, don’t try to make me understand
Let me rest and know you’re with me, kiss my cheek and hold my hand
I’m confused beyond your concept; I am sad and sick and lost.
All I know is that I need you to be with me at all cost.
Don’t lose your patience with me, don’t scold or curse or cry.
I can’t help the way I’m acting; can’t be different though I try.
Just remember that I need you; that the best of me is gone.
Please don’t fail to stand beside me, Love me ‘til my life is done.
I don’t know who wrote it, but I think it pretty much tells how it must feel to be stricken with Alzheimer’s Disease.
I have some understanding of this dreadful disease since my mother died of it in 2018. My brother, sister and I don’t really know when she started with it – she had been forgetful for a number of years, which we just put down to normal aging – hell, I’m only 64 and frequently find myself standing in a room not knowing what I wanted to get from there. It was only after our dad died in 2011 that I realised just how forgetful she was becoming. Prior to that, I had not visited my parents very often – maybe two or three times a year. My mother was a very difficult woman; sadly, I think I’m more like her than I’d want to be – and we’d had several fallings-out through the years. I avoided going home to Barrow until the guilt dictated that I must. Somehow, I always regressed to being a clumsy, fat oaf of a child, as I’d been in my youth, whenever I was in her presence and that became even more so as she aged and shrank. Now when I stood next to her, I felt I dwarfed her completely, and as she became older, I felt very protective towards her despite our mixed feelings.
When Dad died, she needed help. Dad had always taken care of the finances and she had no idea how to cope without him. For a few weeks I visited as often as possible, and sorted out all the legalities over Dad’s estate, since he hadn’t made a will. Fortunately, it was simple enough and everything went to my mum. The solicitor also suggested, in order to protect mum’s interests, that she made her own will and at the same time organised for me and my brother to take Powers of Attorney for both her finances and her health and welfare. She was happier after that, knowing that she didn’t have to worry about anything.
My sister lived more than 200 miles away in Perth, and worked as a carer as well as looking after five of her children. The sixth was her eldest daughter, Katie, who had promised her granddad that she would stay with my mum after he died, to make sure she was all right. But Katie was only 17 at the time and it wasn’t fair to expect her to take full responsibility. My brother also worked full time, in Blackburn, which was only about 75 miles away, but he doesn’t drive and at the time worked all the hours God sends managing three turf accountants’ shops in Blackburn, Burnley and Accrington, so he was also unable to do much to help. I worked full-time, but I had weekends free, and my own car. My late beloved was also ill at the time with non-Hodgkins’ lymphoma, and he died only four months later. Now I was the only one without any real responsibilities. So, I took to visiting my mother every four weeks or so, weather permitting (I’m no good at driving in bad weather conditions). I would regularly spend a day or two, giving Katie a well-earned break, and it was at these times I noticed how often Mum repeated herself, or couldn’t remember what had been said to her for very long. She also repeated the same stories every time I visited – stuff like she’d thought the cat was dying when trying to bring up a furball, or other silly things, but always, always the same stories over and over again. She refused to believe that anything was wrong with her and that it was just her age, until a visit with the doctor produced a memory test at which she did not do well. They set her up with an MRI and the result showed she had Alzheimer’s.
Poor Katie had her work cut out. All through my own childhood, Mum had been a control freak, and very strict with us, until for one reason or another we’d all left home. Katie now took our place, and Mum tried to control her too; fortunately, my sister had brought her up to stand up for herself so Mum’s attempts to establish curfews or make rules fortunately went out of the window. It can’t have been easy for poor Katie and she did a sterling job of keeping her promise to my dad. But even a martyr has a breaking point and at age 21 Kate had had enough. She had been seeing her boyfriend for a number of years by now, and he is a lovely lad who was serving in the Navy. He wanted them to buy a house together and settle down near his family in Scotland, and Kate wanted to go with him, so alternative plans had to be made to care for Mum.
I had discussed with my sister, Katie and a friend who had been acting as mum’s carer during the day, taking her out or spending some time with her while Katie was at work, about the way forward. The problem was that Mum could no longer be left to live alone. She was still fairly compos mentis at this time, and I felt a decision about her future could not be made without her having a say in it.
She was still able to venture out each day to the local Co-op to buy herself a paper and a sandwich, but it was inevitable that sooner or later, she would forget where she lived. She had already left her purse and debit card in the store – fortunately the staff were able to return it to her. She would put a jacket potato in the oven to cook and forget about it, or leave a pan on the stove, and Kate would come home to the mess. Mum was also losing her concept of time. She would get so bored in the evenings that she would go to bed early, about 7:30pm and read until she fell asleep. But, however long she slept, she would wake up and get ready for her morning visit to the Co-op. More than once, Kate had had to convince her that it was 10:00 pm at night and she’d only been in bed for a couple of hours.
The final proof came one weekend when I took her away for a short break to an hotel in Pendleton, Lancashire. I’d booked us two rooms for three nights. We couldn’t share a room because I know that I snore dreadfully, and I know that Mum did too, though she would never admit it; neither of us would get any sleep! Although I’d asked for adjoining rooms, none were available, and we were a couple doors away from each other. I took her into her room with her suitcase, and said she should unpack and perhaps have a rest or a nap, and that I would do the same then collect her and we’d go for a drink before dinner. Unfortunately, while I had intended to shut my eyes for ten minutes, when I woke it was an hour later. I’d got myself a spare key for Mum’s room, and went to see if she was all right. After knocking and getting no response, I let myself in quietly so that I wouldn’t wake her if she was sleeping, but her room was empty. After checking the bathroom and out of the French doors and not seeing her, panicking, I raced down to the reception area, only to see her back retreating out of the doors, trailing her suitcase! I managed to catch up with her, brought her back into the reception and asked where she was going.
“I thought we were leaving and that you were waiting outside for me,” she said. When I explained that we’d only just arrived for a three-day break and she was supposed to be unpacking. At this, she got very flustered and upset so I suggested we sit for a while and I would order us some coffee. I asked the receptionist if we could leave Mum’s suitcase behind the desk, as we would probably go to dinner after we’d had the coffee.
As I sat back down, another receptionist came up to Mum and said, “Mrs Osman?” At mum’s nod, the girl said, “Your taxi’s waiting outside for you when you’re ready.”
I’m sure the blood must have drained from my face. If I had just been a few minutes longer and not caught sight of her leaving the hotel, she could have ended up anywhere and I wouldn’t have had the first idea where to look! The fear was even greater when I later helped her to unpack – all she had in her suitcase was a pair of trousers, a couple of pairs of undies, some soap and six packets of biscuits! I swore then there would be no more minibreaks in hotels! What if she woke in the middle of the night and went off on her travels? I couldn’t bear to think of what might happen to her.
It had become obvious that she could not be left to live alone. She had always said that she didn’t want to live with any of her children – she didn’t want to be a burden. So, I looked at finding her a place in a residential home – at least she would always have someone around. I also made the decision to move her over to West Yorkshire so that I could see her frequently, if not every day. I did some research, and found a couple of places that seemed satisfactory, so I went to visit them, spoke with the managers, carers and some of the residents in each place and decided on the most suitable one – Sandholme Fold, in Hipperholme near Halifax. It was perfect and seemed more like a hotel than a care home. It was clean, safe and with plenty of facilities; the residents seemed happy and content, and the carers good natured and compassionate. And the deciding factor – they would allow Mum to bring her cat, Toni.
I took brochures of the place to Mum, and told her all about it. At first, she was against the idea, but that had been expected. It would be a big deal to up sticks and move after living in the same place for fifty years. But she admitted that she was lonely and fed up of sitting day after day on her own while Kate was at work and she agreed to give Sandholme Fold a try.
In the weeks leading up to her move, Mel and I made a visit to Mum to help her decide what to pack and what to leave behind. It was mostly her clothes and one or two favourite ornaments but she was happy to leave most of her things behind. They’d said she could bring her own furniture if she wished, but she didn’t seem bothered. The surprising thing, going through her wardrobes and drawers was the number of packets of biscuits, chocolates and cakes she had secreted between layers of clothing! When asked about them she just smiled and said ‘Just in case…’
The week before the move, she kept phoning me in the evening – every evening – anxiously saying the same thing, “I’m supposed to be moving to Yorkshire, but I’ve sat here all day and no one has come to take me yet! What should I do?” and night after night I reassured her that I would be taking her the following weekend. But it just didn’t sink in at all.
We spent her last Saturday in Barrow having a little drive around; I took her to one of her favourite eating places, The Bay Horse at Hawcoat, and she had her usual Chicken Kiev followed by Sticky Toffee Pudding with ice cream. She seemed happy enough, chattering away as usual, without a care in the world, but for me there was an element of ‘the accused’s last meal’ about it; I had some very guilty feelings about taking her away from her hometown – the place she’d lived all her life apart from a very brief time in the WRAF. But there was no other option – although we still have relatives in Barrow, my niece and nephew had very busy lives with jobs and their families of young children – they had no time to look after Mum in the way she needed. There was no choice – I had to take her to the Care Home and hope that she would settle in.
More Next Week!