This is a bit of a catch up before I immerse myself in dolls.
First to news of SMIL, who, for new readers, is my Step-mother-in-law, who has Alzheimer’s. She has only been living in a care home for just over a year but her downward plunge from when she arrived has been extreme, now she can barely speak; eighteen months ago we were having half-hour conversations. When I compare her to my mother, who talked opulently until her dying day and had an opinion on everything, there is no comparison.
At the outset of caring for my mother, having had the experience of my mother-in-law, who died of Alzheimer’s in her fifties, in the Nineteen Eighties, I read everything about dementia that I could get my hands on. All the literature agreed on one aspect of the disease, which was that sufferers were happier and, consequently, less demented, if their contacts and surroundings were familiar. For my mother-in-law the question never arose. My father-in-law kept his part time job, so that he had contact with people who were not ill, a few days a week. While he was at work my mother-in-law stayed at home, then he returned and cared for her. Every other week he drove her down to our house where they stayed for a four-day weekend. As our houses were the same half of an identical semi, my mother-in-law was confident of the geography of the house, her husband was with her and she knew all of us. She was less happy on the following weekend when she went up to her sister’s house in Scotland. Although she was surrounded by family, the layout of the house was drastically different, she was miserable and lost.
I therefore kept my mother in her own house with hired help from an agency, using the money from releasing equity from the house until there was nearly no more money to take, but the sale of the house would repay the debt and still provide enough money to keep my mother in a care home she approved of, for a long life, if something happened to me. The home was full of retired professionals, there were sherry afternoons, and, mostly, my mother was convinced she was on a cruise and was happy, never more so than when ‘YooHooing!’ at her former GP every morning when she made an entrance into breakfast from the lift. How the poor man did not choke on his cornflakes I shall never know.
SMIL’s daughter was obliged to put her into a care home because she had sought help from SMIL’s county council. In a surprise visit, a council agent caught SMIL on a bad day and recommended transfer to a care home without delay, locally. The daughter intervened and moved her mother to a care home in the next village to where she lived, several counties south.
Another feature of dealing with the disease, is that, however many agencies you seek help from, there will be that many opinions on what to do for the best. Keeping it private as long as I could, gave me the upper hand. I knew my mother better than anyone and knew how to keep the landscape as close to something she approved of and was happy with.
For the third time last week I told someone at SMIL’s care home that she had been a red head and was therefore prone to allergies. It goes a long way to explaining her aversion to medication, and her current tendency to hold pills in her mouth until the administrator has vanished and then spit them out. I hope they are now administering necessary drugs ground up in the cream in cream cakes, or similar, which is what I did with my mother. Though I have been enlightened on the iniquitous cost of liquid versions of pills.
Having paid help, when you are doing the paying, or family members who know the sufferer of old, is something to aim for but not always possible.
I promised SMIL, because she asked when she was at home, that I would go on ringing and would always be on the end of a phone. A foolish promise that I was obliged to break when dragged into hospital. It was six weeks before I was well enough to speak to SMIL again; whoever answered the phone, (and I had to go through four individually,) was very frosty because I hadn’t rung for a while.
SMIL does talk to me more readily than anyone else. This is not because I’m wonderful; it’s because she’s used to it. She is also used to me saying: ‘If you’re too tired to talk, you just listen and I’ll prattle on.’ which has always raised a laugh. I was worried when I was unable to ring that she wouldn’t know who I was, but familiarity over many years of of phone chats worked well and we picked up as if we had never left off.
However, much of the time it is difficult to catch SMIL awake. Four months ago she was sleeping during the day and roaming the building at night. Now she sleeps all day in a chair and all night in bed. Her daughter took her for a brain scan, to see if there’s something else going on. I have not known anyone deteriorate so quickly. A couple of months into living at the home, SMIL told her daughter she was ready to go home. Then she said if her daughter let her go home, she would say no more about it and all would be forgiven. Then she had a phase of breaking windows with her walking stick, until the stick was removed. Now she has days when she lies on the floor and will not get up. I have suggested this is fear of falling, remembering how frequently my mother lost her balance and fell. SMIL has a point; if you’re feeling unsteady, you can’t fall off the floor.
Amazingly, last phone call, SMIL started by asking how I was and listened while I explained, but when I asked how she was, she threw the phone away in disgust. Nevertheless I was surprised that she remembered that I had been ill and was able to ask after my health. She is now having assistance with feeding, having been woken for meals. She has lost a lot of weight, which vindicates her own dictum that you need a bit of padding as you get older, because you never know. I am sending clothes, as it is dangerous for demented folk to have trailing clothing; they don’t have the patience for sleeves caught on chair arms and door handles. I have sent a soft pair of velour trousers, bought in a sale, which I thought might be too small, but when I tried them, fit me, so I know they will fit SMIL, because all the trousers I bought just before Christmas fall down when SMIL stands up.
My mother forgot to eat and lost two stones in weight in three weeks. I managed to get it back on her by becoming an expert cake baker. She ate the highly decorated fancies as much because she knew I had baked them for her, as for their decorative nature. The carers are doing their best for SMIL and she does enjoy the meals, but putting weight back on people who have lost it through dementia is very difficult. My mother-in-law, never overweight, was skeletal by the time she died.
As always, all information here is simply to help if you are the carer for someone demented. It isn’t a route map, just a wave from a similar position. In an impossible circumstance you do what you can, be as kind as you can, because it could be you, and get what help you can, and get respite care if you can.
And now, in a horribly self-obsessed way, all about me, me, me. I am delighted to say the lengthy scar down the middle of my stomach, which would have been much longer had I been six feet tall, has finally stopped leaking from the hole in the middle. It leaked for seven weeks. I am still wearing a sticking plaster at night, in case, but during the day I have given them up.
I have returned to working out, not too difficult if you’ve done it for twenty-two years, but I’m only doing half an hour or five hundred steps. I am still utterly washed up by mid afternoon and ready for bed at eight.
I am not drinking tea. It tastes foul. This is an amazement, I run on tea. Well I used to. Now all I want is fruit juice and water. I never saw the point of fruit juice, I thought, why not just eat the fruit? I have also gorn orf chocolate! I’ll repeat that I have gorn orf chocolate.
For pudding I am having dry cornflakes and, get this, I have a freezer full of uneaten ice cream that I don’t fancy!!!!!!!!!!!!!!!!!!
Whatever next?* Has the world gone mad? Are my intestines going in for world domination?**
Stay tuned to find out.