A-Z

Interview 50

Age at interview: 72
Age at diagnosis: 62
Brief Outline: Developed symptoms in her sixties and guessed herself what it was. Dementia progressed but Alzheimers was never actually confirmed. Separation difficulties with day care but easy transfer to residential care. Was treated with tegretol because she developed epilepsy.
Background: Husband caring for his wife. They have 2 children. Family history of Alzheimer's disease. Carers occupation: retired apple farmer. Patient's occupation: retired part-time farm shop worker.

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His suspicions were reinforced by family members who had not seen his wife for some time.

His suspicions were reinforced by family members who had not seen his wife for some time.

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I remember the first time my daughter really noticed a problem was we went up to look after their son who was about 2 years old in I think '95, yes January '95 while she had her daughter. And [my wife] was still fine for cooking and things like that. I mean I'd married her partly because she was a catering officer! I knew I'd get well looked after!

And [my daughter] said to me after we were staying in the house, after she'd come back from the hospital' 'Mum's saying some peculiar things and her concentration's going.' 'Oh,' I said 'it isn't just me who has noticed it.' My daughter and husband had been to Italy when they were first married, about a year after they were married which would be in about '86 and we were discussing this. And [my wife] suddenly out of the blue said 'Oh I remember when we did so and so in Italy,' and I knew and [my daughter] knew - my daughter - that she'd never been to Italy. And that's where [my daughter] first picked up signs that something wasn't quite right.

And the other thing that occurred which is so typical I realise now is when she was asked to cook so and so for lunch or do something, a quarter of an hour later she'd have to refresh her memory over it, ask [my daughter] again exactly what she wanted. So I suppose '95, January '95 we really began to realise that things weren't going to go back to normal.

But this was I think about four years after the original worry when [my wife] herself had worried about the fact that she was tending to forget birthdays and things like that.

 

Thinks that it must be inherited in his wife's case, though hopes his children will be protected by his genes.

Thinks that it must be inherited in his wife's case, though hopes his children will be protected by his genes.

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Looking back now the similarities now are very great with her mother. It's the same I imagine part of the brain that's affected because in her mother's case after breast cancer the vocabulary went eventually. And exactly the same thing's happened to my wife again after breast cancer, in '93 and the vocabulary is that part that has gone and we get these connecting words and then about four to five years ago the nouns went. We do occasionally now at the nursing home - just around the corner - suddenly get complete sentences. Re-establishing train of thought.  

Yes it's fascinating to me the fact that she is following her mother so much in the way this is going. As I say her mother had breast cancer and started it fairly soon after and my wife had breast cancer and started it fairly soon after. Well no I suppose looking back she had started it already but it seemed to start after that which is no doubt purely coincidental.

Well obviously I suppose in my wife's case it can be inherited because she is so following her mother, although her aunt, her mother's sister never had any problem at all. Of course my daughter says to me now 'Am I going to be the same?' you know and I sort of jokingly say without knowing the answer 'Well no my genes will counteract it,' rather flippantly.

But it seems to me because my wife and her mother, the way they've gone is so similar it must be, as they say it is, inherited in this particular instance. And it must be the same whichever part of the brain that's affected, the similarity particularly of the speaking. I mean I meet other people who are physically disabled more so.  
 

 

Believes that he found it easier to cope because he already had some experience of dementia in the family.

Believes that he found it easier to cope because he already had some experience of dementia in the family.

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Well I knew, I'd had the experience of my mother-in-law who, I'm trying to think when she had breast cancer, in '83, she survived in her own home until I think it was 1987. We went on holiday to my old boss in Portugal and her, my mother-in-law's niece who had this retirement home had her to stay while we were away. She was still living on her own at [village] where she'd lived for years.

And it was only then that they realised that she wasn't really capable of looking after herself any longer. We didn't really pick this up. We found odd things like the fact she had a job to manage her bank account, finances and things and my wife became a joint signatory. But that wasn't surprising because her husband till he died, and he died in, early on in 19 - daughter was born in '61, late '60s, without looking it up I couldn't tell you the year. 

She'd never had to look after the finances so it didn't come naturally to her at any rate. So we didn't really expect anything there. It was only when she came, we came back from the holiday and we went in the house and discovered things like saucepans popped in a cupboard with very burnt bottoms and things like that and began to realise there was a problem.

So I learnt a bit then and then I learnt more from my sister's point of view because I used to ring them up to see how they were and they, I could tell that one couldn't remember who was supposed to pay the phone bill who, they tried to share it between them and they got very confused and in the end they ended up with summonses because the wrong person hadn't paid the bill and things like that. But theirs was not dementia in the same way as my mother-in-law so I suppose I, I, by the time my wife began it in about '92 I learnt quite a lot from my mother-in-law, I was beginning to get a feel for it. Nothing on the technical side obviously!  

But I suppose that probably helped quite a lot in that I could see that she was following her mother very much in the same sort of way. And that probably helped me cope with it because we'd had to cope with mother-in-law, I mean OK she was with her niece from '87 for a couple of years and then the niece had to give up the small residential home and they got her in to a very good, a particularly good nursing home in town because she'd lived in that area all her life and her friends used to go and visit her until they didn't know how to cope, they didn't get, when she'd chat away saying nothing, this sort of thing.
 

 

Was open about the problem with all their friends and found himself with 16 regular volunteer helpers.

Was open about the problem with all their friends and found himself with 16 regular volunteer helpers.

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I was always very open with it, with all our friends, we were both in the newly formed choral society and I made no secret that there was a problem to my friends. As a result they knew how to react. I ended up, this is what [name]'s always amazed at, the fact that I had sixteen volunteers I could call on and I still have a list with the dates, so I look up, 'Oh I haven't used so and so for three months and I'll ask them', if there was a meeting I wanted to go to or something like that.

And they were marvellous, they came and they all knew [my wife] well, they knew what the problem was, it wasn't that bad apart from the fact that one couldn't leave her on her own, she got anxious. We both also sang in the local church choir which again is the same sort of membership. And because my son plays for the local cricket club we were very involved there socially. So we had volunteers from the cricket club as well. Most people seem to have about two [name] reckons, she said 'I've never met anyone who had sixteen.
 

 

Explains that he has picked up most practical information from other carers.

Explains that he has picked up most practical information from other carers.

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I got a lot of information from [name] at [name of agency], not just talking to her, information, written information and also I'd got a book on Alzheimer's, which I think I got from the Alzheimer's Society. I get newsletters and things from the Alzheimer's Society but to me they never, they're interesting but not helpful. I've always found that I've got to that stage by the time I've read it if you see what I mean! It's come along afterwards, not in advance of.

I think I got most of my information from talking to other people. You see I've been going to [the day centre] carers now for five years in July. I've talked to an awful lot of carers, there aren't many of us, there's probably six of us at a time but I suppose that's when I've picked up what I call practical information. Different people's reaction, different people's problems which has been far more helpful and also when my wife was here I never got much time to read. By the time I was ready to read of an evening I was nodding off at any rate.

 

Describes settling his wife into a residential home.

Describes settling his wife into a residential home.

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They did a, I think it was a lunchtime visit where [my wife] stayed to lunch plus if I remember right two members of the [name of agency] team and I remember one evening in the same week I went round and we sang hymns with the residents and then we decided the beginning of the following week, each time she'd come back you see. The following week we'd try an overnight stay. Now we'd done an overnight stay at [the local] hospital the previous October and that worked marvellously. I can remember having quite a long chat with the senior nurse beforehand, ironing out any problems and [my wife] stayed overnight and when I turned up to pick her up the next morning she almost said 'Good Lord what are you doing here?' Or words to that effect.

She was totally relaxed then. Then of course that Christmas [the local] Hospital closed. So having got I suppose you would say 'our foot in the door,' we decided we asked the NHS, [name] asked the NHS where else and they said they hadn't got anywhere that was available. So she said 'Well we go it alone do we with a private nursing home if we can arrange it?' Obviously with [name of residential home] and my connections in mind. And that's what we did.

And eventually the second week we did an overnight stay like we'd done at the local hospital], the idea was we'd go round and pick her up the next morning. And [name] came round here the next morning, I mean I don't know how she did it. [Village], she was here at half past six in the morning to monitor it. And she went home at half past nine at night. Back again the next day she would have been for half past six, and she came round to me and she said 'Don't fetch her, she's so relaxed it's silly, it's not going to help.' So she literally stayed that first night and stayed in there. And she was totally relaxed and has been ever since.

When I think back to how anxious she was when we first went to [name of agency] and how they gradually got her so relaxed. I can look back now and see [name] was absolutely right, that was the time to do it. She said she could see I was beginning to go down hill although obviously I didn't realise it and I said I can get through the summer.

So really the decision was almost made by [name], providing I agreed and obviously it was the right decision. It couldn't have gone more smoothly and as she was relaxed I was relaxed.

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