“So you’re telling me I have early onset dementia?” The doctor looked uncomfortable for a few seconds, then suggested I was perhaps a little too old for the ‘early onset’ part to be entirely accurate. I said I didn’t think I was too far gone yet to realise this. He nodded solemnly and wrote something on his notepad. Some people need to learn how to take a joke.
Rose had said she thought I was becoming more forgetful. I said I couldn’t remember doing that. She smiled indulgently, as she often does. It’s one of the things I like most about her. Now and again I say silly things just so I can see this smile, which is not the same as any of her other smiles. Every time it happens, suddenly we’re in our teens again, hardly able to believe that, out of all the billions of people in the world (or, more realistically, the few hundred we might conceivably have met), we somehow found each other. We were very happy then and, although so many things have changed, we still are.
Rose had said she thought I was becoming more forgetful. Wait, I’ve already written that. Hah. I reminded her I’m a very busy man, and can’t be expected to remember everything. “Just go to the doctor and get yourself checked out,” she said. “What’s the worst that could happen?” I suppose we know now.
As I understand it, the interval between a diagnosis of dementia and the end of life is usually around eight years. It could be a lot more, or a lot less, but eight years is the average. That’s not so bad. I might not have lasted eight more years anyway and, if I did, nobody could say I died young. Also, it doesn’t seem to be a particularly unpleasant way to go, compared with others I prefer not to dwell on, and I’m told the care system in this country is excellent. We’ll see.
It’s too early to be thinking about that sort of thing. I feel fine, and I can still function more or less the way I always could. If Rose thinks the situation is becoming problematic, she’ll tell me. I wouldn’t take it from anyone else, not even Daniel, dear fellow though he undoubtedly is, but I’ll take it from Rose.
For the moment, life carries on as normal. I have a business to run, and I’d better get back to doing that.
It took me a long time to admit it, but the situation could have become very dangerous. I forgot to make a simple check I’ve made a thousand times before, and it was only thanks to Daniel’s quick thinking that we didn’t have a disaster. Well, we probably wouldn’t have in any case, but disasters are things you need to make sure definitely don’t happen, not probably.
This was what persuaded Rose to give me ‘the talk’, which she did as beautifully and kindly as I knew she would. I ranted and raved for a bit, but of course she was right. We all agreed that Daniel would take over the business, and I would retire. It would have happened round about then anyway, so it wasn’t too difficult to accept, though I’d rather have made the decision myself than have it forced on me.
One morning I got up as usual, ready for a day in the office. Rose came into the kitchen a few minutes later and asked why I was having breakfast so early. “I always do this,” I said. “No, you don’t,” she said. “I do! I have to go to work.” “You haven’t been to work for six months.” “Of course I have.” “Darling, you haven’t.” “Really?” “Yes, really.”
Clearly, things are no longer as they once were, but at least they’re still manageable.
We went to our favourite part of France for a break, I think it’s our favourite part of France, it’s certainly mine, I assume it’s Rose’s too, I don’t think I’ve ever asked her, she seems to like it. We flew to Montpellier and picked up a hire car, naturally not the one we had booked, that never happens, but it was nice enough. One day we had lunch in a lovely little restaurant in a lovely little village, I can’t remember its name. We paid the bill and drove away, Rose said something, I don’t know what it was, then I saw some damn fool was driving straight at us, I slammed on the brakes and shouted at the other driver, Rose said it wasn’t his fault, I said of course it was, she said I was driving on the wrong side of the road, I said there’s only one side of the road to drive on she said yes and it’s not the one you were driving on I said it is at home she said but we’re not at home now.
Rose did all the driving after that I need to stop writing I’m very tired and I feel confused for some reason.
women come to the house every day four times Rose says but I lose count some of them are nearly as old as me some are young and pretty but not as pretty as Rose is no one is as pretty as Rose is they make meals then they take me to the bathroom and wash me I dont know why I can do it myself but Rose says I cant I dont know why she thinks that
theres a lot of shit around the house the women have to clean it up i dont think there was as much shit as this before but i cant remember
the women are nice one of them is called rose
a man came to see me he called me dad i said my name isnt dad its patrick he said i know a woman said something about the sun but i didnt understand
p
pa – p
p p
p
Hi, I’m Daniel. Patrick is my Dad, and what you’ve just read is his last attempt to write his name. As you can see, it didn’t go well. He’ll never write anything again. If you give him a pen he doesn’t know what it is or what to do with it.
I still find it hard to accept that such an intelligent, brilliant man has been reduced to what he is now. It’s like watching a child grow up, but in reverse. A year I ago I told the doctor he seemed to have a mental age of six, and the doctor agreed. Today I’d put it at eighteen months, if that.
He had to be moved into a care home, of course. It was all becoming too much. We couldn’t get carers to go to the house more than four times a day, and when they weren’t there Mum found it extremely difficult. What must it be like to see the person you love most in the world deteriorating like this? She told me she used to cry herself to sleep every night. Dad didn’t hear her because they were in separate rooms. They couldn’t share a bed any more. One of Dad’s last notes will give you an idea of why that was. I don’t want to go into any more detail.
I said I’d go round to help if I could, and I did. Eventually it got to the point where I was basically living with my parents again. I hardly saw my wife and kids for weeks, which is one of the reasons we started looking for care homes. It just wasn’t fair on them. Jess said it was like she’d had a divorce.
Mum and I went to see a home one of her friends had recommended, and we immediately decided we didn’t need to look at any more. It was a nice place with a beautiful view, and everyone we met was pleasant and kind – the manager, the nurses, the cooks, the cleaners, everyone. I’ve heard some terrible stories about care homes, but this one was just perfect.
A week later, we took Dad round, and they gave him tea and biscuits. On the way back I asked if he had liked the place, and he said he did. Then I asked if he would like to stay there, and he said he wouldn’t. I said okay, but I knew he wouldn’t have a choice for much longer. A month after that, we took him there permanently, and he settled in straight away, which was a relief.
The carers who looked after him while he was still living with Mum were wonderful, and so are the staff at the home. Several people have told me they admired me for being his carer, but I wasn’t that at all. I could have never been a carer. As far as I’m concerned it’s a horrible job, but for those who do it it’s their passion. They are incredible. I just helped out, and at one point I lost patience and shouted in his face that he was an idiot even though I knew none of this was his fault. I’ll never forgive myself for that. The worst part was he’d forgotten all about it ten seconds later.
Mum died two weeks ago. She had a heart attack and collapsed right in front of me when I was visiting. Thank God the kids were at home with Jess. It was bad enough for me. The first dead body you ever see shouldn’t be your own mother’s.
It must all have become too much for her. I always knew she was resilient, but she must have been superhuman to cope with all this for as long as she did.
I told Dad the next time I went to see him. He just looked at me blankly, then said “tea”. That might mean he wanted some tea, but it might not. It was the only word he’d used for more than a month. Come to think of it, he hasn’t used it since then. He only mumbles now, and I don’t know what he’s trying to say.
I hope the news didn’t affect him like it would have done before he became ill. I can’t imagine him being able to live without Mum while his mind was still working. I also can’t imagine him seeing her go through what he has. It would have broken his heart, because he really loved her. He really, really loved her.
Now Dad has gone too. He just faded away. He didn’t wake up one morning, and although he hung on for another fortnight he eventually stopped breathing. I was there when that happened, and it was horrible, but at the same time peaceful – certainly more than Mum’s death had been.
You search for things to hold on to in these situations. I found one when I realised that although dementia becomes more and more upsetting for the people around the sufferer, the sufferer himself or herself doesn’t have such a bad time of it towards the end because they no longer know what’s going on. I hope that’s true, at least.
I gave this account the title I did because of Mum. I don’t know anything about music, but she used to do a bit of singing when she was a student, and she knew a very old song called Dido’s Lament which she thought should be played at Dad’s funeral. I found a recording and immediately realised why. The line “Remember me, but ah! forget my fate” appears several times, and that was what she wanted for him. I cried like a baby the first time I heard it, and nearly did the same again when it was played as the coffin was being brought in, except I didn’t want to break down with Jess sitting next to me. She held my hand for support, which she has done many times, but this was the most important.
She gave me comfort, and so did the song. Both of them still do today.
Image: Self Portrait Between the Clock and the Bed by Edvard Munch.
Public domain
Note: this story is freely viewable to everyone for one week from the day of publication, after which it will join the others behind a paywall.
Recent posts
The Second Queen of Hirta chapter 7: Anne
The Other: a dialogue
Streamline Moderne: a study of extraordinary objects