So my dad, I would… if I was putting it on a graph, I would plot a gentle line downwards to his death: that’s his dementia story, and that took place between, I don’t know, 2012 to 2020, so sort of, yeah, quite a gradual decline over… a longish period of time.

Whereas my mum’s descent, which is complicated by the fact that she had a mental health diagnosis which at the last point included bipolar, so she had some mental health things which may have masked or exacerbated the dementia. She had some fall query, seizure episodes, which took her into hospital, and I would say that after each of her… each of those hospitalisations, she was markedly worse, and she might make a bit of a recovery, but never… she would never get back to where she had been.

She, from diagnosis to the point where she passed away, it was only, you know, seven and a half years which in the grand scheme of things is not that long of a time. But yeah, she got to the point like say two or three years maybe before she passed away that her mobility was just getting slowly and slowly worse and she used to have seizures, which I think got 100% contributed. Every time she had a seizure, she would get a little bit more frail and her mobility would get a little bit worse. There was the suspected stroke once or twice, but no-one could ever really confirm it. Because short of putting her in a CT scanner which, to be perfectly honest, it just wasn’t worth, it wasn’t worth it. Yeah, her mobility would get worse.

She was having falls she used to then just take tiny little steps and then to the point where she needed to be aided. She could walk, but you know, she needed one person on other side of her. She couldn’t physically bathe. She couldn’t shower. She couldn’t go to the toilet herself. She couldn’t hold a fork to her mouth. She needed to be fed. She would only drink through a straw. She couldn’t hold a cup. She got to the point where she was on soft food. She couldn’t chew properly. And I’d say maybe it got to the point, that point maybe a year to a year and a half before she passed away. But it was just slowly progressing and progressing up to that point for a while.

She continually asked to come home, perhaps even longer than a year, and she used to plead with me to bring her home, and that was heartbreaking. It was very difficult. I was visiting her every day and every day I was coming away knowing that I’d let her down; that is to say I hadn’t acquiesced to her wish to come home.

But I found the following day that she’d forgotten all about it within a very short space of time and eventually I was able to reconcile myself to the idea that although her desire to come home, and this time were talking about her own home, with me, was very, very strong, she soon forgot about it when I left.

And so eventually it became easier to bear. But there was still the heartbreak of seeing her deteriorate physically and mentally. I did find that by singing to her old songs, I’d got a song book which just had words in, mostly war-time but some subsequent, I found that she was able to join in, remembering the words, this I found quite amazing. Often remembering word for word some of the old songs. Including in particular one that was our favourite when we were courting and that seemed to make the visits much easier than they would have otherwise been.

But eventually even that went. And, she would still respond in some ways, she, would smile a little when she heard the songs, but she ceased to be able to remember them, just the odd word now and again. She rarely if ever knew me as her husband, she would ask ‘Where’s [name], have you seen him?’ and of course by this time I’d become so used to it I used to accept that I wasn’t [name] and I used to tell her that he was OK but he hadn’t been able to get here, you know, and that I was her good friend and she could rely on me. And there’s no doubt that she became to accept me as being a reliable substitute anyway.

But eventually of course she reached the stage where she was first of all refusing food and over a fairly long period of months the, an attempt to feed her with liquid foods, but then she started to refuse liquids as well, even water.

The best thing has been that for a long time [my husband] retained the ability to play the piano, he couldn’t read music any longer, he couldn’t remember pieces that he’d played any longer but he improvised and it was very creative, he’s always composed and improvised and that creative urge was there really right up to oh, six, seven years after diagnosis.

Even when he’d been judged by the consultant to be severely demented and his scores on all the mini-mental whatever it is, these psychometric tests were practically zero right across the board, yet he could still sit down and play a piece of music where he’d set – and each piece was different each time – set out some musical ideas at the beginning of the piece and perhaps twenty minutes later he would return to those same ideas. And yet his short-term memory was supposed to have been shot to pieces.

And also the music gave him a vehicle to express his own feelings and so it was very useful to me as a carer to know that today he’s feeling ‘angry’ because I could tell from the way he was playing a very tense, rhythmically exciting piece. And then another day he would be perhaps more autumnal in mood or perhaps this aggressive piece would gradually become a more relaxed and resigned piece, and I’d know that he’d got it out of his system.

And that to me was the most wonderful thing. He managed to retain that creative musical urge for so long and it was, a source of inspiration and consolation. I think to both of us. And I think the other wonderful thing is how long a smile goes on and even when you can’t get any words, whereas now to get one smile just makes the day worthwhile.

She can sit like, so we went to a concert, a kind of memory type concert yesterday and she sat there for an hour because she was so happy and so involved with the concert, that the sitting was fine. But if it’s like a film or a TV programme she might or might not sit for a while, but often not. It has to be something completely mesmerising for her [laughs] to sit so that’s why going to a film is massively risky now because if it’s, unless she’s completely kind of mesmerised by it, she’ll get very anxious and, rock and go “mmmm” and then, you know, then you have to take her out.

So we went to like music, Matilda the Musical and maybe five months ago. And she, she sat through it. She loved it. She was laughing all the way through, singing and everything. And then I took her to another film with Tom Hanks and she completely freaked out. You know, I had to take her out physically, she was just like because she couldn’t follow. She just couldn’t follow it. She was so upset. So, it just depends, but it’s, but it’s getting worse, you know, it’s getting, her attention span is getting less. So, you have to just be massively patient. But, you know, the idea that, so you can’t ask questions. There is no dialogue. It’s incredibly difficult to know what to do [laughs] with somebody like that.

They will resist putting in their legs in something or putting their underwear on or putting their top on. Resist every item in the daily routine of getting dressed. But, I think it is sometimes they feel frustrated in the fact that they are not, I think they have moments of, there brain beginning to work in the distant past and theve been holding jobs of responsibility and here they are being dictated to, being told to do this and told to do that, and persuaded to do this and that as opposed to giving out any of their orders, you know.

I think with [my wife] there were moments, very rarely but moments when it was frustration because they couldn’t do what they really wanted to do. They didn’t even know what they wanted to do but they were, frustrated because they couldn’t do it, you know. If you couldn’t turn the tap off for instance. Or if you couldn’t do the simplest of jobs, blow a nose, for instance. You couldn’t, she couldn’t blow her own nose.

She’d try but couldn’t really do it, just a like child. I think they must get frustration and just flash moments when you know everybody I think gets, when yore frustrated you cat, when you, yore trying to, you know you can do something or feel you should be able to do something and you cat, you know.

I’ve noticed that her condition is deteriorating, very slowly, but it’s certainly deteriorating, and we’re now at a stage where I help her to get dressed in the morning, I choose her clothes, she has simply no idea of what to do next. I put her in the shower, when I close the door she says… put her hands up to the glass door and says, “Don’t leave me, don’t leave me,” so I can’t leave at all, and I have to tell her what to do in the shower, and then she comes out and is dried, I take her into the bedroom and we begin her dressing. I cook all the meals. We’ve just recently had someone to come in to help clean the house because over the last three years it’s slowly got worse and worse and I haven’t had the time to do what has… is really necessary, but we’re OK now. So, I’m learning new skills every day.