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Interview 46

Age at interview: 75
Age at diagnosis: 67
Brief Outline: When brain scan was found to be normal was admitted for a week's assessment. Diagnosed as having Pick's disease (fronto-temporal dementia) Cared for at home, with day care and regular residential respite, finally in residential care.
Background: Husband caring for his wife of 54 years. They have one son. Carer is retired. Patient had been a seaside landlady as well as a housewife.

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Describes how the diagnosis of Alzheimer's disease was made.

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OK. Right, the first indication of any problems was probably about nine years ago. Very minor things happened. My wife became less reliable than she had been when asked to do anything. She would cease to, the house, little things in the house were not as clean as they were before. Small things to start with which were noticeable because she had been meticulously clean always.

And then she started to ask me 'Who was that?' when we'd spoken to someone in the street, someone we'd known for years probably but not seen frequently. And then when I tried to explain who they were very often it didn't seem to ring a bell at all with her.

Then we decided it would be as well to see the GP about all this and the GP suggested that another appointment of about twenty minutes, and he suggested she almost certainly was starting to develop Alzheimer's disease which was a fear she'd had, she'd expressed a fear of this, a vague fear previously.

The GP didn't leave it at that fortunately but referred us to a local hospital and the doctor there who took great interest in these kind of situations said something that wasn't quite right as far as the diagnosis, the GP's diagnosis went. And she had scans, MRI and - what's the other one called? - MRI, CAT, and CAT scans and they both showed no brain shrinkage, no problems which puzzled him a bit.

So we were then referred to a consultant who in more detail, went into more detail and admitted to being rather baffled and asked us if we were prepared to go to [town] to see a Professor [name] at the medical research council there. Which we duly did. We had a full day's appointment starting at nine in the morning which went on until about three in the afternoon, saw Professor [name] and then various other doctors.

They wrote and asked if my wife would be prepared to go into [name] hospital at [town] for a week for full tests to further try to establish exactly what was wrong. Which eventually turned out actually to be Pick's disease with the sub heading fronto-temporal dementia. This was all explained to us, what the problems were and the differences in Alzheimer's. 

 

He realised that his wife was aware that something was happening to her.

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The first indication of any problems was probably about nine years ago. Very minor things happened. My wife became less reliable than she had been when asked to do anything. She would cease to, the house, little things in the house were not as clean as they were before. Small things to start with which were noticeable because she had been meticulously clean always.

And then she started to ask me 'Who was that?' when we'd spoken to someone in the street, someone we'd known for years probably but not seen frequently. And then when I tried to explain who they were very often it didn't seem to ring a bell at all with her.

Then we decided it would be as well to see the GP about all this and the GP suggested that another appointment of about twenty minutes, and he suggested she almost certainly was starting to develop Alzheimer's disease which was a fear she'd had, she'd expressed a fear of this, a vague fear previously.

But eventually her behaviour changed, her character changed, she would get up in the middle of the night, put anything on the stove without, without any liquids in it, or plastic items melted and had to be thrown out. She would sit downstairs in a cold house without any heating on; with a little persuasion go back to bed.

All these kind of things went on and on and then she started to go off on, not just wandering, very positively to take herself off to somewhere with intention of going somewhere quite logical but without any hope of achieving the destination because of the distance that was involved. In one case she was setting off to go one hundred and seventy miles - on foot - to, to where she came, the town she came from, which was obviously, the direction was right, she was eight miles away when she was picked up, still going strong but the, it was impossible for her to reach the destination. Anything could have happened to her on the road.

All these, these kind of things went on and on and on, gradually getting worse. She wrote little notes which I found, or kept finding, long, a long time afterwards tucked away' 'Whatever's happening to me? Have I got Alzheimer's?' She was very worried about all this and yet she couldn't really, she didn't really seem to be able to express them in any detail.

One day she was, we found her tying the gates of an old disused cemetery quite close to home, very overgrown. She knew about this cemetery but she was tying the gates with her, from the inside. And I brought her home and asked her what, what on earth she was really doing and she said 'I want to die.' It was as simple as that. She realised there were big problems coming and she was very worried about it and that's what she said.

 

Difficulty understanding mistaken for deafness.

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Her communication was going; speech was poor. She said she was, at one stage she said she was going deaf, but she had extensive tests. They went to a lot of trouble and said her hearing was actually perfect. But we realised what was happening was she couldn't cope with the speed of conversation, normal speed of conversation.

And the same applied to the television, I had already bought one of these headphone relay systems, cordless for her and she said it didn't improve her hearing but of course it was the speed of normal conversation. It was the speech was the problem, she wasn't coping with it. We realise all that now, didn't at the time.

 

He can only guess at what she is feeling.

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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.

 

Did not at first want to ask for help, but finds that other carers can understand each others...

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But I've become involved now with the Alzheimer's Society and I'm a committee member. I didn't ever want to be. I always felt I didn't want anybody's help and I didn't feel they could help me. But I found gradually that yes I do need the help and also meeting people who've got, are in the same situation as yourself helps. But you don't want to live with them all the time but just to talk to them occasionally. 

A few of us meet for lunch once a month and we have, we have moments when we talk to each other about our partners but the rest of the time it's general things, and it, we all understand the other's problems to a point, although they're all different of course, but we understand the difficulties people have. And we can, all these things help you, I feel better when I come away anyway, let's put it like that. It's not easy to help people because some people are like me, I didn't want help in the beginning. I just felt I didn't need help from anyone. 

I didn't think it would do me any good. I thought I was strong enough to cope with it but no one, believe me, is strong enough to go on and on and on year after year, day after day, minute after minute, you need help. And take all the help that's going.  

 

Is upset when he worries about her being alone and unable to communicate particularly at night.

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And all these things are very distressing when you have time to think. The worst time is waking up in the middle of the night after two or three hours sleep and wondering 'Is she comfortable? Is she too hot in bed?' She hasn't got the, although she's got the physical ability she hasn't got the wit to throw a cover off. 'Is she cold on a cold night? Does she need another blanket?' Of course she's, and she's well looked after, I know but these are the worries that get at you all the time because she's so helpless. 

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.

 

Says that the different responsibilities of professionals are poorly explained and that services...

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Well, when she was, in the hospital, which I've already mentioned for respite care, the hospital, the NH hospital, I, a social worker who was a, I, from the hospital contacted me. Now I thought she was an NHS worker. No-one, no-one had explained to me that she was a Social Services social worker with an office at the hospital to look after the patients' interests in that hospital. And when my wife then went into the residential home I, contacted her with a query one day and she said 'Oh I'm not your wife's social worker anymore, she, the social worker is now, [so and so] and you'll contact her at the Social Services office.' But no one had explained, I was a bit baffled by all this. It all seemed very confusing. I didn't realise, no one said 'Well I only look after the interests of patients here.' I would have understood then straight away. Those are the kind of things that leave you a little bit confused in the beginning.

The new social worker contacted me and yes she, was very good but even then it was all assumed that I understood the system. And I didn't. I really didn't understand the system. When I realised and started to pick up bits here and little bits of information there and realised that there's was this dividing line between Social Services and the NHS and yet the Social Services had a worker in the hospital. When I started to understand the system then I thought 'Well this is ridiculous because, why aren't we told this, why aren't we given a booklet pointing out the transition from NHS to Social Services'. A gradual one with bits and pieces here and there, what will happen first, what will happen second, what you'll have to pay for now which you didn't before and why you'll have to pay for it and who you'll have to pay. And, none of this was explained properly at all.

There are so many services available, finding out who provides them is so tricky it's not true. Recently I asked for some kind of an aid, a walking aid, a support for my wife and I asked them, I asked the GP if he could arrange for anything. And he said 'Well it's now the, it's not the Social Services any more that deal with this, it's the NHS,' he said 'the,' oh, this department anyway 'at the local hospital.' 'Oh right.' So I said 'Well will you put a note on and ask, because my wife's got no communication, will you ask whoever's coming to see her to communicate with me so that I can meet him or her there and talk to them about my wife's needs because it's me that's making the request anyway.' 'Certainly.' But of course nothing happened, there was no, that message didn't get on for some reason.  

Many things like that which, the services are there theoretically but they're not always available when you want them. And we know money comes into it and time and everything costs money but having said all that, sometimes I feel it would be better if less services were provided but provided, those that are provided, provided more positively and quickly. Perhaps sometimes the authorities try to encompass too much which they can't cope with for one reason or another.

 

The number of days of day care gradually increased and it was possible to have respite stays in...

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So we then with the help of the local Social Services got her into a local County Council owned home which is quite near to where I live and she did, or she was, by then she was going to day care at this home. First of all for three days a week and then it was gradually increased until she was going for seven days a week.

Occasionally, this was attached, a separate entrance, but attached to the home with a connecting door, and occasionally I would leave her. I couldn't pick her up in the evening or late afternoon for some reason, so they would look after her in the home itself, the home properly, give her, her tea. So she did gradually get introduced to the home and then she went in for respite care there instead of the hospital. And she was on four weeks at home, two weeks respite care. Again I was very grateful for this and the home was a home in the fullest sense of the word. No visiting hours, you could go in any time, stay as long as you liked, have your meals with her if you wanted to. Take her out for a walk if you wanted to or stay away completely. And it was very, very suitable.

 

Suggests ways of making sure you discover what a home is really like. He also advises being clear...

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Look, if, if residential homes come into the picture, look at several and look at them unannounced. Don't make appointments, go and ring the bell, knock on the door or walk in and tell, ask for the manager and say that you are contemplating somewhere for your partner and can they please, first of all have they got any accommodation available that would be suitable to your partner, explain the situation, and then ask to see a room, or ask if you can just walk around and have a look around and open doors.

Walk around, if they want to come with you(r) great, open any door, and if they say 'Don't, you can't open that door someone's in bed,' OK accept that, but other doors open them, have a look, have a look at the kitchen. Use your nose. That's important in homes. A smell of urine here and there, well sometimes it can't be helped but you soon, you soon, you soon sense whether it's a permanent smell or whether it's something that's just happened. And all those kind of things but never make an appointment, always arrive unannounced and that's, that's the reception you get and the situation you find there, you'll get a better idea of whether it's gonna suit your, your partner.

That's as far as I can go on that I think really because every individual then has got to make their own decision and their own choice and before you make a decision find out exactly where you're gonna stand financially on this. Because, payment can be virtually free or partial or whole, depending on the, on your own circumstances, on the circumstances of your partner. So go into everything first and ask the questions and ask again until you get answers that you understand. I think that's as far as I can go.

 

Describes the chaotic and difficult process of claiming the funding to which his wife was entitled.

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I suppose one of the things that's least helpful and irritating is the fact that I have to pay some of the costs for my wife in the residential home. I have to pay this to the County Council and I have, I had initially to fill forms in about income and capital which is fair enough. The County Council forms were quite good and reasonably straightforward but then they assessed her as receiving income support, which she didn't receive. So I questioned this and they said 'Ah but she's entitled to income support if she's in this home. So we're assessing you as if she's receiving it so it's up to you to claim it.'

And this is the least helpful thing, is claiming the income support, the rigmarole that went with it. The size of the forms, I managed to get through them but I'm sure some people would be very confused because some pages were for her income and her capital and some pages included mine and others didn't and the whole thing I found a very confusing form.

And then they assessed it wrongly and by reading carefully all the information that came with it I found that she was entitled to more, which was the amount the County Council were assessing her as receiving, than they'd given me because they had, they'd got the wrong capital figures. It's a different capital figure apparently if you're in a residential home owned by a Local Authority. I can't remember the details but I stressed this point, pointed out the paragraph in the booklet and they said 'Oh yes, yes, we'll send you another assessment.' Three times the same assessment came back. This is the least helpful business.

So eventually I got on to someone, I forget what their title was but a real complaints person, told them the whole story, they agreed with me and said 'Leave it to me, I'll sort it out for you,' and about an hour later she rang back and said 'It will be sorted this time and you'll get the proper,' and I did. But again it's push and question, push, don't accept anybody as, as being God, push and question. And that's been very unhelpful, claiming this. And of course the silly thing about it is it's all coming out of the public purse anyway. So why bother to have to go through the rigmarole of claiming it, that huge form or booklet of forms when it's being paid to a Local Authority anyway who already get grants from the State.

So it's, it's a load of unnecessary bureaucracy which I find least helpful. Bureaucracy we've got to have but unnecessary bureaucracy we don't have to have. And I feel sure that could all have been worked out by, between the County Council's assessment people and the, getting more money from the State, either via income support or whatever, however they want to get it in grants, or whatever they get it in. Rather than give everybody all this hassle, getting wrong assessments back and all the bureaucrats who are dealing with it must cost more money than the amount of money they give out! In some cases I'm sure. So that I did find very unhelpful.

 

Regrets his lack of patience when his wife first showed symptoms of Pick's disease.

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I suppose, I suppose in the beginning I lacked understanding, real understanding of her problems. This is all on reflection now because this is being wise after the event. I lacked patience. This is when she was living at home. I would shout sometimes at her when she'd done something wrong, something silly, or what seemed to be something silly. And of course you do lose patience I think anyone who doesn't is entitled to be, well you can either be knighted or sainted, I don't know they can please themselves which they prefer. Because you, if you shout, I am by nature a bit quick tempered, and if you shout at someone you could bite your tongue off afterwards and instantly. But you don't think, you don't think 'I will shout at my wife in two minutes time because she's done that', because you wouldn't shout would you? It's something that's instant, you see.  It's, it's a combination of frustration, anger and worry for them that causes you to.

Then when she was in respite care, she'd come home, I found I was changed, I had more patience. But I found then at the end of the month it was going again and it got worse and worse. And I think my attitude to her changed, really changed. I was very upset when she went into, when we had to make the decision that she would go permanently into this residential home. That did upset me and changed me a lot.  

 

Remember all the good things rather than dwelling on the past.

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I sometimes feel with my wife's total inability to communicate that this is when I feel very depressed about it, I feel it's like a death without a funeral. But I would say to anyone who feels like this, 'Don't sit and dwell on it, don't dwell on the present when you feel depressed, don't dwell on the future, think of all the good times you've had, the places you've been, the things you've seen and shared'. It, we used to sail and my wife used to crew for me, she was never very keen but she used to do it, and we enjoyed it, and these were the kind of things.

We, we went to the States and delivered cars right across America, from New York to Las Vegas, from Las Vegas down to Florida, these things, these are the kind of things you've got to think back to. This was twenty-five years ago I'm talking about, about this business in the States.

When I was 65 and she was 63 we, with two haversacks we had three months going around the world. We had no, we used to laugh because we had no baggage to collect, and we decided anything we wanted we'd buy as we went because it was gonna be hot anyway and this is what we did.

And you've got to look back, force yourself, and you really have got to force yourself to look back at those memories. And memories I think are better than photographs, because photographs can sometimes depress you, but memories you can flit from one to the other quickly and also you just look at the particularly good things, you remember the good things.

But it's not easy but this is the only way out of it sometimes I find, because in the dark hours, the early hours of the morning are probably the worst, when you wake up and you start thinking. But try not to think about the present or the future at those times. If it's daytime get up and go out, go and see somebody, talk to somebody. If you like a drink go and have a drink, so there's somebody to talk to. Whatever your interests are go out and do them. Don't sit there and mope because I find if I sit there and mope it gets worse and worse and worse.

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