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Carers of people with dementia

Deterioration, severe dementia

It is not really possible at any time to predict how much one person's dementia will progress, let alone how fast or slowly this will happen. It seemed that deterioration was more rapid in younger people, including those who had frontal lobe dementia (also called frontotemporal dementia), and more gradual in those with later onset Alzheimer's disease or multi-infarct dementia.

There were several accounts of carers noticing a sudden marked deterioration in connection with some change in circumstances. In one case, this occurred on holiday and was so distressing that it was felt to be necessary to cut the holiday short. However the same carer also describes how most of the time deterioration happened, almost unnoticed, with faculties seeming to flicker like light bulbs before they eventually disappear.

 

Dates the onset of serious deterioration to the anxiety caused by going abroad on holiday.

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Age at interview: 60
Sex: Female
Age at diagnosis: 72
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We did go on holiday which was an absolute disaster. We'd, as I said we have an interest in classical music, particularly Haydn, and we went to Austria to Eisenstadt for the festival about four years ago I suppose. And he'd really been looking forward to going as much as he could look forward to anything, he was really looking forward to it. But when we got to Heathrow he was desperately confused by the airport. And when we got on the plane I could see that he'd actually dropped several levels and didn't know where he was going.

Anyway we went and we went to the concerts and they were too loud and there were too many people and he was absolutely terrified. We were stuck there for a week but we managed to sort of walk out into the, countryside and just have quiet times, and he was OK. And I changed, our tickets and came back to Gatwick as soon as I could, rather than have another go at Heathrow.

And that I think knocked him back far more than any of us had ever considered, and from then on he did go downhill very, very quickly.

 

The loss of faculties is gradual.

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Age at interview: 60
Sex: Female
Age at diagnosis: 72
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But everything else slowly vanished. A difficult time but it happened so, it doesn't happen all at once. Its like a light bulb going actually, you get a flicker and you think oh there goes that, and it might go on for some months, the fact that he could sometimes do something and sometimes not, but you know in the end its gonna go and then one day its gone. One day you can dress yourself, another day not. One day you know which, you know that your socks go on your feet, the other time they could go anywhere.

Getting into a car became a, an increasing problem because it, if I could open the door and he could actually sit down into the car it was alright, as long as I could get him to face the right way. But you could be up to half an hour getting someone, getting him in the car because he couldn't remember which leg to put in first. And even if I held it and he looked down the sort of mechanism for telling his brain to move that leg didn't work. So there are a lot of daily details which, are quite hard for carers because you've got to allow time for absolutely everything and you haven't got time for anything else, as it progresses.

Several carers were puzzled to find that certain faculties remained apparently intact, even where there was evidence of severe mental damage. For example, physical fitness may remain in tact, so that brisk walks could still be enjoyed. Sometimes there was an unexpected ease in answering questions, doing crosswords or even mental arithmetic. But the faculty most often noticed as continuing was the ability to enjoy music.

People were surprised to find that someone who seemed unable to remember anything else, could remember the words of songs, particularly those they had sung early in their lives. One carer describing the agony of having to refuse his wife's requests to take her home was grateful that he could still make some sort of contact with her through sharing the music they had listened to together in the past.

 

Describes the contact they had through music despite his wife's increasing dementia.

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Age at interview: 78
Sex: Male
Age at diagnosis: 68
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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.

One woman noticed that while her husband continued to appreciate music, his taste seemed to have reverted from classical music to the kind of things he used to like when he was younger- big bands, Ivor Novello, Operetta. Another was impressed by her husband's continued ability to improvise on the piano and felt that he was able to use this to express his feelings of anger and frustration.

 

Continued to be able to improvise on the piano and use it as an expression of his mood.

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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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.

Several people expressed the belief that continuing to drive or living in their own home had particular significance for the person who was developing dementia and that when these things had to be given up, they would give up in the battle against deterioration. A part of the battle to ward off deterioration for one carer was trying to maintain his wife's appearance. When he could no longer persuade her to get out of bed, he realised that it was no longer appropriate to go on trying.

 

He gradually accepted that she would no longer do the things she used to do.

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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My wife loved having her hair done and it was at the, when she didn't want to go to have her hair done that I realised that she then had I think gone into another stage, if there are stages within Alzheimer's which I believe there are. We had to have the hairdresser to come in because she still wanted to look nice and took pride in her appearance.

And in the last six months that she was home with me she hardly went out at all. For about the last four months she didn't get up out of bed at all. And with the poor diet and no exercise she eventually got to the stage where I had to call the doctor in because she was collapsing. In the last two weeks that she was home I had tremendous problems. I didn't go to bed at all, listening for her to get up out of bed. I had to support her to the toilet.

Severe dementia poses tremendous problems for the carer; the most mundane of daily activities like getting dressed can be a battle. One carer described his concern for the feelings that his wife might be having as she had to accept her absolute helplessness.

 

While he struggles to dress his wife he reflects on what her feelings might be about her total...

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Sex: Male
Age at diagnosis: 69
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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.

The late stages of dementia are distressing to consider but there is moving evidence of the devotion of devoted carers who, in their continued love and concern, watch for every glimmer of the former person both to assure themselves that they are not suffering but also for the reward of a flash of recognition.

 

Faces up to the loss of the very little that still remains of the person who was his wife.

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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Other forms of communication, verbal communication, have virtually gone. She can't, she can say words but they're not put together to make any sense. So it's virtually impossible to verbally communicate. So I, that must be another stage or another happening. And that I am sure is probably only going to, get worse, because even the few words that she can remember and string together incorrectly will, probably go.

I have tried reminiscing with her and that doesn't appear to work. I've talked about our children, she can't remember the children, she doesn't recognise them when they go in; she doesn't know their names. I've tried to reminisce using old photographs and that doesn't register. I've tried to reminisce talking about our past and that doesn't register. So communication becomes very, very difficult. Which, is another stage.

So I think that relative to stages it's very difficult if not impossible to say that during the first year this happened; during the next year or eighteen months that happened and to actually put the changes that occur into a time scale, which is drastically what I tried to do and wanted to do with the consultant early on. I now fully understand why he couldn't give me much indication other than tell me the likely overall happenings that would occur without a time scale.

 

He can only guess at what she is feeling.

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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She can't indicate in any way her feelings, she can't smile, cry, frown. The only way you can hold, you can try and interpret her feelings are by eye contact and some, sometimes, some days you don't get any, other days after a while she'll look at you with eyes like saucers and questioningly sometimes, you feel' 'What's happening to me? What's it all about?' These are the feelings you get. 

But there's no communication of any sort at all. Nothing. She can't write anything. She can't put a kiss on a Christmas card to her sister. And yet when I gave her the cards, Christmas cards I took all, we had about a hundred come from relatives and friends and I took them down daily, gave them to her, told her who they were from and she would take, I would put it in her hand and she would open them, just as if she were reading it, and then close them and look at the picture. And this convinces me that although there's a mass of confusion there's still some awareness there, to see her do these little things.


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Last reviewed July 2018.

Last updated July 2018.

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