Carers of people with dementia

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 we're 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.

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, they're brain beginning to work in the distant past and they've 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 you're frustrated you can't, when you, you're trying to, you know you can do something or feel you should be able to do something and you can't, 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.