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Interview 21

Age at interview: 52
Age at diagnosis: 57
Brief Outline: Her husband developed Picks' disease when he was 57. The patchy nature of his dementia made it difficult to convince people that his problems were real. Delay in getting the diagnosis meant they experienced extreme difficulties in accessing his health insurance.
Background: A former nurse and mother of four who cares for her husband (a doctor) at home. He was diagnosed in 1997. Also providing distance care for her elderly demented mother.

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Describes how difficult it was when people did not believe her husband really suffered from...

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One of the main difficulties that I and the rest of the family have with my husband's disease is people's total inability to understand it. When you mention the word dementia which its not always appropriate to mention but when you mention, a degenerative brain disease that's progressive, that sort of thing and you hint that its akin to Alzheimer's. People think of Alzheimer's disease, they think of somebody not remembering what your name is, not know what day of the week it is, not knowing who the prime minister is.

Now with a frontal-temple dementia, those kinds of things stay intact while an awful lot else is falling apart at the seams. So, you get a situation where because my husband is very articulate, because he can still read the paper and he's got time, he probably knows more about world affairs than most other people who've got busy lives. And he will discuss this with people and they will look at me as if actually it's me that's got the problem. What on earth am I talking about?

Our medical friends are some of the worst, my husband cannot drive, he cannot now practice medicine. They know what the diagnosis is, they've only got to go to the Internet actually, and bother to look up how it affects people. They come to us, they say 'Oh, are you back driving again yet [name]?' Now this is a degenerative disease, it isn't going to get better, it's actually getting worse. We've had remarks like 'Oh, are you doing any locums [name], to pass the time?'

And because they spend a short enough time with us that they don't see a problem, its deeply isolating and the children actually will daddy to, to blow a gasket simply in order that people will see that its real, what we are living with is very real.

 

Is surprised that no one has been interested in their ideas about causes and thinks that exposure...

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It's a thing that, in the early days particularly, we both spent quite a lot of time thinking about. And my husband is very, he's had quite a bee in his bonnet about the fact that there have been no epidemiological studies. Nobody's been interested in his background.

I mean to give you an example, he was a tiny little boy during the War and he, they put a gas mask on various children, put them in an aircraft hanger, sealed it up and let some gas out so that they knew what the smell was like. So he was exposed to some kind of chemical warfare type gas. I mean, it could be completely irrelevant. I'm sure it probably is, but nobody's actually asked and when he's really confronted people and said 'Look, you know, I've got things in my life that I think might be relevant, would you like to hear about them?' The answer has been 'No' really.

I mean we've moved, we've had two houses where we had to have the, the roof space treated with this sort of Rentokil stuff, and in both cases we didn't move in until the stipulated time, but equally in both cases, that house stank and at the time we said 'Gosh' you know, we hope this isn't doing us any harm. That kind of stuff nobody's interested in. I mean I'm not a research scientist, I don't know, you know, whether its wrong that those things are being ignored or not but, yes its,.I mean I, I don't know again whether early on-set dementias are becoming more common because the system for diagnosis and the awareness of it is heightened or is it becoming more common? In which case is it environmental? 

I just, you know all sorts of things go round in your mind. Is it our, I don't think it would be diet, because we've been pretty wholesome on that sort of thing; but certainly environmental. I mean, that was another thing. If it wasn't tragic it would have been funny. The very first specialist memory clinic we attended, as we were driving over in the car my husband said to me 'You know I've always worried about the farm sprays'. When we lived in our very first cottage when we got married, in our garden there were certain times of year when we would really smell this very potent agricultural pesticide spray. And you could feel it almost getting into your tubes. 

And we used to comment at the time you know, 'Gosh' we hope this isn't doing any lasting harm. As we were driving to the memory clinic, [my husband] commented on it, named the farmer who was a lady and said you know 'I wonder if its all her fault', and we laughed. We got to the clinic and it was surreal. The very next person to walk through the door as a patient was that farmer!  Now, coincidence or what, I don't know, but nobody's ever been interested about hearing that kind of detail of, what could have affected[my husband. 

But that may be a research science strategy that's moved on and maybe it's not relevant in this day and age, there are others ways of doing things, I don't know. But certainly in my husband's family the, previous generations of his family have lived, I mean they've been exceptional in living a very long time. Many of 40'14 them have lived into their 90s. Driven, served, one old uncle serviced his own car until he was about 95  I mean they, they've lived exceptionally long with exceptionally astute minds up until the end. So its something, but who knows what. We just don't know.

 

Would have been more patient with her husband had she known more about the nature of the disease.

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The other thing that I haven't mentioned which was a terrible trauma for us, if it wasn't Alzheimer's and we're not really sure what it is, well now, that opens up huge possibilities for a wife who is grappling with horrendous possibilities, its all very, very early stages. I actually started bullying my husband and saying 'Look, will you try harder? If you try harder, you might not do these things wrong.  If you try harder you might remember x, y and z'. And that was horrible and I bitterly regret that.

You know if I had known more I would never have put [my husband] through that. And I think I, I caused my husband to doubt the validity of what, was he ill? Was he well? Should he go back to work? I certainly doubted it because I was not being helped to find a proper diagnosis. That was dreadful. So yes, I, I wish that I had just gone on saying 'Look he's ill, will somebody listen to me?'

 

Benefited from being open with her children about how their father's dementia affected all of them.

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And another thing I would say, if you've got children that are not adults off, you know, leading their own independent adult lives, be completely and utterly honest and open with them. Children sense when they're not being kept in the picture. And the disease itself is an isolation, if it's a dementia. If within your family you then further isolate your children because you're not being honest, that's, that's very difficult for the child. I think most children can cope with the truth. They can cope far less easily with not being sure whether they're being included in the truth or not.

That's my experience. We've always been open and it's worked. And if somebody is finding a particular facet of [my husband's] behaviour difficult… Now the one person who couldn't be open about that ended up with anorexia. And the others have been able to be open. We've cried together, we've laughed together, we've prayed for each other. And that really is, if you can just keep everybody communicating and if somebody is feeling desperately guilty because they've flown off the handle and highlighted a deficiency when they wish to goodness they hadn't, you know, let's have that out and help the person through it, that's what we've done.

And if you feel you know, particularly my youngest daughter, she felt that she had been getting irritated and then perhaps she tried hard not to, if you can, you know you can see that too, and acknowledge that too, hopefully. I think you're just in it together really, particularly if you've got school age children. But they need to feel that and it's a great-heightened sense of security, because it's a terribly insecure feeling when a parent is changing from what they were. And they need to feel as secure as they can really.

 

Explains how her religious belief is a comfort and helps her to decide what to do.

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I think our Christian faith is enormously important to both of us. From [my husband's] point of view his faith gives him a hope beyond the disintegration of this life and its, it's a great comfort to him to, to feel that he's valued and, and as precious to God as if he had no disease, with all the limitations that, that come. So that's very, very important to [him]. Its very, very important to me in that I can pray that we will be shown things that will be helpful for us that will be occupations that will help our days along in the winter, this kind of thing.

I can actually ask God to help me provide what is best for [my husband]. And ask him to give me the strength that I need to cope with this whole thing. So it's important to both of us equally. And I think it is a great help for me to be able to remind [him], not only how precious he is to me, but how precious he is to God as well despite all the limitations that come with this disease. I think, I think that's all I can say.

And I asked God to show me what my motives were and why I was doing it and I asked him to help me in my demeanour when I spoke to the Patients' Representative. I asked to be protected from negative, malicious things that weren't going to serve any purpose, just to pursue a route of justice, no more, no less. And actually to pursue a route that, my main motive was to, its interesting I couldn't lodge that complaint until my main motive, was not to get at the individual, at the man, but to genuinely try and address a problem that could prevent others suffering the same fate that we suffered. And that was very much to do with my faith. 

I wanted God to approve of my motives before I did it. When we have a big flare up and my husband really loses control and I've learnt that to try and talk it through logically is hopeless, to try and go to him and explain what's gone wrong and why is, does nothing but inflame it. I would walk away and I would ask God to give me the grace to not fly back at him but to compose myself so that I can remember it's a disease and that I've got to go and try and help him through the disease. Because you see we can't ever really now have an argument like a normal married couple. 

We are not coming from the same level playing field. If my husband feels passionately about something and I feel equally passionately the other way, I'm in, as much as anybody is who hasn't got a brain disease, I'm in control and I can see the thing reasonably appropriately. If my husband's stuck in an obsessive frame of mind, its no good me reacting as I would have done ten years ago because I'm reacting not against an opinion or a person but a disease. And I've got to adjust my reaction, and I need help with that and I would pray to God to help me. It's as simple as that really. 

And I've asked in prayer in the past to know what the right thing is. Is it right to turn my back and let the dog run out into the road, or is it right to drop it and trust and just be led what is right? Yes, and when I, when we have difficulties as a family. Now that is a great help. If I have a particularly pressing worry, I will contact the children and I will ask them to pray about that worry that I will have clarity of the way forward. And I mean that is a great help because its not only support from them, its, its actual prayer support too. 

And if we've got something looming for instance, my son got married and there was enormous potential there for things to come horribly unstuck with my husband. And we all prayed that it wouldn't happen, and we had the happiest day I can possibly describe to you. That's how I would, how my faith would int

 
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Describes making a complaint about her husbands care plan. Describes digging her heels in when she felt her husband wasn't getting the care he needed.

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So they said 'Well was I not happy?' and I said 'No, I wasn't', I wished to see the, the team member that had made the decision. Well I was then landed with a meeting of four professionals, the consultant who my husband was under, who I, neither I nor my husband had ever met; the psychologist who had decided that we couldn't be helped any more; the CPN and the team manager. So two out of four I'd met before, and there were four of them and one of me. And it was appalling. The agenda was set, signed and sealed before any of us walked into the room and they just said that there were no, there wasn't any more they could do, we were coping, there were other people who were more needy and that was the end of the story.

Well, I went back to my, our poor long-suffering GP who was so appalled that he said he would write his own letter of complaint to the Chief Executive because he then felt totally unsupported. He is not an expert in an unusual dementing illness and basically we were thrown to the wind with the buck stopping at him. I again, sat down and wrote my own letter to the Chief Executive. This is all at a time when one is totally devastated because one feels abandoned. Either you sit back and accept the abandonment or you have to gather everything and start fighting, yet again.

So I wrote to the Chief Executive, our GP wrote to the Chief Executive, and the result of all that was, after a long and tortuous time of meetings with various people, funnily enough I think the thing that did it was my husband writing quite an offensive letter to one consultant that used to be a colleague of his, again offensive as in consistent with his disease. All I can tell you is that after that letter, things started to happen!

A new CPN was assigned to our case. I think she'd been given the, remit that we were complainers and she'd got to come and sort us out and smooth troubled waters and jolly well pull out all the stops and make sure things worked, otherwise we'd be complaining again and so on. The upshot of it was, now I, my, complaint was based on the withdrawal of two, one hour sessions a year. That's one hour every six months with a CPN. We had an hour, three times over a period of eighteen months, both my husband and I with the psychologist. So those had been withdrawn. Because they were withdrawn my husband refused ever to speak to anybody within the unit again. 

So they'd not only lost the carer, they'd lost the sufferer as well. As a result of that and as a result of us making a formal complaint I now have a CPN who meets with me well, so far we've probably had twice as many meetings as I ever had before. My husband has a placement in a, actually a psychiatric unit because of his age and the Alzheimer's unit would be wholly inappropriate. He has transport that collects him from home and takes him in on a Friday morning. He has a session in a carpentry unit under supervision, he has lunch there and he has transport back again. Now if the problem was finances, resources, I would suggest that it wasn't terribly well managed in respect of what they've ended up having to fork out if that really is the problem.
 
 

Describes the meaning for her and her husband of his no longer being able to drive.

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What did it mean? Oh everything, absolutely everything, he enjoyed driving, I don't. I really don't. I get in a car and it's a means of getting from A to B. He actively enjoyed driving. He has driven since he was 18, its independence, its everything, we live as I say four miles from anywhere. And you know if he's gardening and he needs some more potting compost, if he's mowing the lawn and he needs more petrol. 

Anything, he's got to come and ask me which is jolly difficult, when you've never had to do that in your life. Its all about freedom of movement, freedom of what you do, when you do it and not having to fit in with the fact that if I don't do it now, I'll be going in to shop later, I'll do it then. It, its just that personal freedom, and I think its terribly important for a man to be able to drive. And to have it taken away is devastating.

 

Describes the efforts involved in obtaining suitable day care for a younger person with dementia.

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As a result of that and as a result of us making a formal complaint I now have a CPN who meets with me well, so far we've probably had twice as many meetings as I ever had before. My husband has a placement in a, actually a psychiatric unit because of his age and the Alzheimer's unit would be wholly inappropriate. He has transport that collects him from home and takes him in on a Friday morning. He has a session in a carpentry unit under supervision, he has lunch there and he has transport back again. Now if the problem was finances, resources, I would suggest that it wasn't terribly well managed in respect of what they've ended up having to fork out if that really is the problem.

So you know, having kicked and screamed we now have got what I think a lot of areas in the country, dealing with these problems would consider is far more appropriate care, bearing in mind my husband's been off sick since 1995 and this situation only started in May this year, 2001. But its all been a desperate fight and its required huge energy.

 

Describes the damaging effect on their relationship when she seemed to be responsible for...

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Well that threw up the first problem, which was, if it may not be that then why, having been told by two different doctors that I shouldn't drive, my husband's concern was 'Why should I not be allowed to drive?'  

He put this to the consultant and this was the first real problem that was thrown up. The consultant said 'Would you mind leaving the room while I discuss this with your wife?' which my husband did. The consultant discussed it with me, called my husband back into the room and said 'Well, as a result of talking to your wife, I must now recommend that you don't drive,' this having been the third doctor to recommend that.

Now that threw the onus wholly on to me and my husband perceived me as the, the wicked wife who had persuaded everybody that he was unfit to drive, and that I think did more harm to our marriage than anything has ever done before or since. And I don't think that man had any possible concept of what he was doing to us as a married couple, by not accepting the responsibility of having to make a decision as a professional and stick by it. That the whole onus was thrown on to me and it was devastating. It harmed us for months and months and months. So that really could have been avoided.

Now an example of this was the driving. My husband and I were at each other's throats. We were destroying each other with this awful driving issue. Now my husband said to this new consultant that we were under, 'I do not think that I am unfit to drive.' So this consultant made it very, very clear that in his opinion my husband wasn't fit to drive. And my husband said 'Well I don't accept that'. So he, I maintain in an extremely courteous and compassionate fashion, accepted my husband's right to say that and he said 'I fully understand your feelings, I can, imagine how I would feel in your position. This must be addressed properly, I stand wholly by my medical decision and I would stick by that in a court of law. However, I hear what you're saying, you have a perfect right to be heard'. And he said 'I feel the way forward now, this is obviously causing enormous distress not only to you but to your wife as well, we must arrange for you to be tested properly by an independent assessor'.

And he gave us the particulars and the wherewithal about how to apply for an assessment at [the] Assessment Centre, where you go for the entire day, you arrive at half past eight I think it was and you're tested through till nine, they, sorry, through till half past four. They test stroke patients, head injuries, people who may be have been injured but could recover enough, it is a really objective, thoroughly proper assessment and they do it a number of different ways.

And at the end of the day my husband had failed consistently from the beginning of the day to the end. On one of the tests it was on a computer simulator and they could produce computer feed out paper, and as a scientist that meant something to him. He'd got evidence, which is what he wanted, and he was entirely satisfied. As a matter of fact he was inappropriately satisfied but that is a definite feature of Pick's disease. He almost patted them on the back and told them they'd done a jolly good job! But that is typical of the disease. But we as a couple were released from the agony of the fact that it was my fault. Now any doctor could have suggested that as a way forward. That would have saved us, oh a year, if not more, of agony. 

I, was appalled when [my husband] was sent out of the room, the way it was indicated quite clearly that according to what I said, a decision would be made and that was precisely what did happen. But I, you see I could have

 

Has to decide whether in allowing her husband freedom she is taking an unacceptable risk.

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My husband still plays golf, he has a group, mainly from church who collect him, out of great kindness and play golf and bring him back again. Now for various reasons that they're a lot older, their health is failing, the whole system is beginning to fall apart and there is the option to go to a much closer golf course, which it would be easier to get a taxi, or me to do one way or whatever. But it would mean going as an individual and picking up a partner on spec. Now that is potentially a minefield, given my husband's condition.

Now I was faced with, do I dig my heels in and try and persuade him not to pursue something that's very important to him and gives him a lot of pleasure, or do I risk knowing that the thing might become unstuck. He might play with someone who doesn't know he's got that disease, he might do something unacceptable, or react in an inappropriate fashion, and then I've got to unscramble that. And again I, I chose, I think we have to live with risk. We have to live with risk and its just deciding what's an acceptable risk, and I decided that was. And actually it came horribly unstuck, on one occasion.

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