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Interview 42

Age at interview: 63
Brief Outline: Became ill in his 50's. Suspected his own diagnosis but was told it was depression. Lived alone and attended day hospital for a year. Then in sheltered accommodation. Finally had to be sectioned and was in psychiatric hospital. Transferred to EMI home, still on Section 3, died 18 months later.
Background: Wife and mother of 3, who separated from her husband during his illness but continued to care for him. she had been a relationship and loss counsellor. Her husband was a retired NHS works officer and hospital engineer.

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Early symptoms masqueraded as depression.

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Early symptoms masqueraded as depression.

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It really starts in the summer of 1993 when I took early retirement from teaching. My marriage had been in trouble for some eight years then and one of my motives was the thought that if I got away from the stress of teaching I might actually be able to help the marriage as well. Unfortunately at that same point and in fact three weeks before I retired [my husband] was made redundant with, retired on redundancy grounds and so he was home just before me and while I jumped he was pushed. 

And he was very distressed about that, partly because he was working in the Health Service and his job was not going to be done anymore and he was working in the community with people who he felt really needed him and who were essentially going to be abandoned. And the reason for that preamble is that this is why his dementia masqueraded as depression and was thought to be depression for a long time. 

And I saw his behaviour to me which was increasingly angry and often bordering on hatred, as the thing that I had chosen to retire. I had, I'd been counselling with Relate Marriage Guidance for twenty years so I had set up in private practice and my retirement was really going and his was a shambles.

And so it was some time before we realised what was really wrong. Ironically in those first few months he became an advocate for the Alzheimer's Society. And he actually went into the, one of the local nursing homes and saw conditions there and he also saw what Alzheimer's looked like at close, close to. And he I suspected it quite early on. I can remember lying in bed and freezing and thinking 'No, no it can't be this'. And it was probably a couple of months after that, that he said 'I wonder if I've got Alzheimer's?' And he also said 'If I have I don't want to live.'

And we arranged to see our GP who in fact was marvellous, really very good all through this and who knew some of the things that [my husband] was, [he] was doing. I mentioned in the written thing that he would come into the house, he would open up all the windows and go out again. He would lose things. We had a holiday booked for New Zealand and he completely sabotaged the bookings. It actually cost me about £1,000 to get that sorted out.

And it all, there was the thing, is this just, is this anger, is this depression or is this Alzheimer's? And so the doctor arranged for him to see a neurologist who said 'No, it was depression' and arranged for him to see a psychologist who did tests and who said, 'No, this was depression'. When I think back on the results of those tests, no way did they represent depression. They were very specific losses of memory but she made a good case for this only being depression.

 

Describes the difficulty persuading doctors to give her a diagnosis and the relief when someone levelled with her.

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Describes the difficulty persuading doctors to give her a diagnosis and the relief when someone levelled with her.

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So I went back to the doctor, we went back to the neurologist and this time I went too. And she trashed me. He, his, [my husband's] father had just died and I said he'd behaved inappropriately. 'People, all sorts of, no behaviour is inappropriate after a death.' And I really felt swooping round the green outside the house where he was pretending to be an aeroplane when he'd just been told his father was dead, was inappropriate. And I said the neighbours were beginning to comment and show concern. And she said 'Just because your neighbours think he's got Alzheimer's doesn't mean he has.'

And I said I wanted a second opinion. And she was very angry and she said 'You'll get the same message from,' but yes I could see a psychiatrist. And so he saw a psychiatrist who said to me he thought the problem was neurological.

And I read the Alzheimer's News and by chance there was an article about [a] clinic in [place]. And I phoned him and said 'Can I bring [my husband]?' And he said 'Yes,' and told me how to do it through the NHS and my doctor cooperated. And I've told that story in detail because I consider that was the first unethical thing that was done in that neurologist knew he had Alzheimer's, knew he had a dementia because when she wrote to [the professor] she told him so.

And had we been told the truth in the first place things would have worked out very differently. I can't pass a comment on whether it would have been better or worse but [he] certainly would have been here and we would have followed a much more conventional path.

They were marvellous to me at the clinic and [the professor] talked to me at length about preserving life or not, quality and quantity of life. And essentially said 'Let him take all the risks he wants to. If he's knocked down by a bus what does he lose? Just years of gathering dementia, so let him do as much as he wants to do.' And I said 'I have thoughts about things that coroners sometimes say.' And he said 'If it ever came to that I would support you.'

And so I allowed and encouraged [him] to ride a bicycle for as long as was possible and I kept him out of full time care for as long as was possible. Because he was a very proud and very independent man and I felt that was what he, what he would want.

 

Felt that help with company and activities for her ex husband would have been more useful than domestic assistance.

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Felt that help with company and activities for her ex husband would have been more useful than domestic assistance.

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And I realised that progressively they were expecting me to do more and more. There was money for them to buy anything he needed by this point and they would leave me messages saying 'He needs soap powder,' and I would leave messages back saying 'Then get him some.' So for three weeks no washing was done. So we had reached the end of the line. And I got flu. And it was snowing. And I phoned the Social Worker and said 'I'm pulling out, he needs full time care.' And the Social Worker said 'There isn't a place at [name of residential home].'

And actually one of, the issues that I meant to mention and I lost and I'm going to go back and say it that during all the time [name] wasn't here the help that I wanted was company and for things for him to do. And all they would offer me was washing and ironing and cooking and cleaning. And I could do that. I'm the generation that isn't overwhelmed by domestic things. I went to work, I didn't particularly want to do them, I paid a cleaner. 

But I can, I don't mind doing them and it didn't matter, but I wanted him to have company, I wanted him to have stimulus and that could never be provided in any way. And he didn't fit, he wouldn't cooperate and there doesn't seem to be a way round that either, to cope with the awkward and the stroppy. And if you've been awkward and stroppy all your life you're entitled to be awkward and stroppy when you're dementing.

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