Interview 07

I mean when you talk to other people about the first insights that you have everybody says the same things that it's a series of unrelated and apparently insignificant things that happen. It's only now that one can look back and make sense of them, so let me give you one or two examples of what I mean.

For example we went on holiday in 1996 to Falmouth and drove along the coast, stopped at the beach and I remember saying to my wife 'Would you lock the car up and I'll go and get a parking ticket and then we'll go off.'  We went off and came back an hour later and all the doors of the car had been left open. 

At the time we kind of laughed about it, no harm was done. But a year later when my daughter was relating to a doctor at the [town name] School of Medicine where she works and she mentioned this incident as one of a number of inexplicable events, his immediate reaction was 'It's probably Alzheimer's.' And that business of leaving the car doors open was something that became a sort of a thread really that went on for several years. That's one example.

I think the second is a much more profound experience and this must have begun about 1997. Sorry, there were other incidents like failing to take telephone messages down accurately so friends or colleagues would ring me and I didn't get the message or I got a message that was incorrect. But really the really significant thing that happened was, round about 1997 when my wife had returned to work successfully, been at work for about two years but had then decided to give up because of the physical problems that she was having resulting from the accident. 

I began to notice that when we'd had a meal in the evening, round about 7 o'clock, we would come into here and it was a kind of ritual really, we always read the newspapers for about an hour after dinner and talked about what was in the news and so on and it was something that we'd done for the past twenty years. 

But she wasn't doing that any longer and all she was doing was sitting in this chair staring into space. I would say to her 'Is everything alright?' And she'd say 'Yes I feel fine I'm just thinking.' This happened night after night and looking back now it was a sign of a sort of detachment that has become characteristic of her illness, when she can go off into a dream world for quite long periods unless I'm there to bring her back. So that was that sign.

And coupled with that was a general sense of depression. Eventually I must have shown quite a lot of concern because on one particular occasion I remember her saying 'Why are you always getting annoyed with me?' and I remember saying to her 'It's because I'm so worried about you.' And she was absolutely distraught at that moment and I remember saying to her 'Look, let's go and see the doctor.' And she agreed to that, when it came to it, on the morning of the appointment she wouldn't go and so I went down on my own. At that stage he thought it was depression.

We have, its something that my daughter and I have talked about because, you know she, she said to me quite recently 'Well, Mum, has got dementia, my grandmother had dementia, we think almost certainly her mother also probably had it in the last stages of her life, maybe I shall get it.' so, certainly we, we've kind of thought whether this might be a, this might be something that, would be helpful to the female side of the family.

I think the research suggests that you know over the next twenty or thirty years we are, we are going to, we probably are going to come up with.

Something which will if not cure dementia at least will, can alleviate it dramatically. And therefore anything which can make the younger generation more alert to the possibilities of developing it and, and therefore can take any actions, which might alleviate the early stages seems to me a good thing. So on the whole I think I'm probably rather in favour of, genetic testing. Yes, I think on the whole I'm in favour of it and I think my daughter is also probably too.
 

What I observed while we were waiting to be seen was, people going in and out, husbands, wives, family members going in individually, obviously to be, to discuss things with, the professionals. And I imagined quite incorrectly that what was happening was that they were being given information or a diagnosis separately from the, from the patients, but that turned out to be incorrect.

But I suppose the, second, reason was I suppose I thought again incorrectly perhaps that consultants would be reluctant to, give a completely honest diagnosis when you're dealing with an illness which is, which is pretty distressing to contemplate, where there is no apparent, treatment or cure for it. And the long term prognosis is a pretty grim one and I just felt that maybe they wouldn't want to do that quite directly and openly, but that didn't prove to be the case.

And then when we eventually went in it, was, to see the consultant, it was just the fact that without any preliminaries, he simply came straight out with the diagnosis, not wrapping it up in any way at all, and causing us both, quite naturally, considerable distress. I understand now I think why he was doing that, but it was quite a shock at the time.

Yes. Why do you think...?

Oh, I think that, if you're less than honest, if the patient is not made aware of the nature of their illness then it simply cuts you off from a great deal of the, support and advice that you can get. I mean not least, it makes the future dialogue between the consultant and you and the patient, a less than honest, and therefore a less than helpful, dialogue.

And I just think that as far as we're concerned, everything that has flowed from that moment in terms of, medical treatment support for both myself and [my wife], has stemmed from the honesty and the directness of that first diagnosis. So I'm, now absolutely convinced that in almost any case that I can think of you really should be as honest as you can. And then you come to terms with that, and I believe most people will find a way to come to terms with it, and then you can kind of move forward in terms of, leading your life as naturally as you, as you can.

I think the issue was when we decided to add, or the consultant decided to add to the Reminyl and the sleeping tablet and the anti-depressant, decided to add to that a tranquilliser. To try to deal with this issue of agitation and anger in the early evening resulting in her wanting to storm off and so on and so forth, and it was suggested that we added the tranquilliser, Diazepam.

When I read about the side effects of such a drug I mean I was extremely concerned indeed, you know. It looked as if there was a possibility that you could be even more confused than you were, that people kind of you know became almost zombie-like and so on and very, very passive and I really was worried about that and that was why I sought help on that.

There was an actual clear division between our GP who said 'Give it when you sense that something is about to happen, when you sense in the early evening that she's boiling up for a period of agitation and possibly wanting to wander off, try and sense when that moment is and give it her.' and the psychiatric nursing team who had a quite different view. And their view is that the side effects of tranquillisers may not be as powerful with dementia patients as they are with ordinary patients and they may not become addicted in quite the same way and actually what you should be doing is giving them on a regular basis when they're much more effective. 

So you're giving them say in the early afternoon when they've had time to get into the system and are much more efficient, rather than giving it as a sort of panic measure and I was quite taken with that. So that's what I try to do, not worrying too much about the side effects. 

I have to say I'm still worried about the side effects and I'm actually caught between those two models of how you give a tranquilliser to a dementia patient and I still haven't resolved it. So it's that kind of issue. Another issue would be exactly when do I give her, her evening dose which is now the Reminyl plus the anti-depressant. If I wait till just before she goes to bed that often results in anger. She sometimes throws the tablets across the room; she won't have that so it's choosing a moment during the evening when she's at her most receptive. It's issues like that but particularly the role of the tranquilliser in dementia which I think is quite a difficult thing to get right and I haven't got it right yet. 

I mean it, there was no decision to be made in a sense. I mean if you want to be very legalistic about it. It's part of one's marriage vows you know that you, are to be with that person in sickness and in health. We've loved each other for forty years. There have been many times when I've not been well and she's looked after me with, without reservation, without hesitation. I hope I've done the same for her and this was merely a more serious example of that kind of fulfilling one's vows.

I never thought for a moment that I would, not do it, she has looked after me with such devotion and love; it was little enough I could do in return to do the same for her. I, there was no decision to be made, that was it, you know.

And what keeps you going as a carer?

I mean partly that it is, it is partly that sense of still loving you know the person that I, I've known for over forty years but also there is, there is a sense of satisfaction in doing the job as well as you possibly can. There are even things that I, positively enjoy about it if one can actually say that.

I've taken great pleasure and joy in, she now allows me to, look after her hair which I, we, have daily sessions with that, usually with lots of laughter on both sides. She thinks I'm turning into some kind of rather eccentric hairdresser!  And, so that, there is a lot of satisfaction in that.

I do get a great satisfaction when I know that she's nicely dressed and nicely turned out and is feeling good about herself. I love, I think I've said this before, I really have enjoyed, cooking and cooking for her and that sort of thing.

Everyone says its one of the worst moments you have, when you, take your wife or husband, mother, for the first time for a period of respite. Nobody wants that to happen, you don't want it to happen, certainly the patient doesn't, you want life to be as it was before. And it was simply horrid, the first time that we did it, she said she didn't want to go and I was doing it against her will and so on. 

And, I had to try to, persuade her that this, a little period apart for both of us would be good for both of us and after all she did like and know the people that she was going to be with. But it was a difficult moment.

We've now had four periods of respite and each one has got a little bit easier. And the way we're working it at the moment is this. We talk about the respite experience as a regular part of conversation. You know, I might say, perhaps with other members of the family here, 'Oh, do you remember [name] when you were in respite you did…' so and so, or 'you met…' so and so; so its, its there as, as part of the memory of our recent past.

And then, and sometimes [my wife] herself will, will suddenly say 'Oh, when I was at [the residential home] last, we did…' so and so. Or, 'You know the thing about [the residential home] is I, I like the food but I don't enjoy being in the dining room because some of the other people don't eat in a very nice way.' So we're able to open up a little discussion, 'Well some of these people are very much, are quite seriously ill and are quite elderly,' and she says 'Oh yes, I understand that perfectly.'

So we quite often have discussions about it and she has memories of the past experience. And then about three or four days before she's going I usually tell her that this is what's happening' 'Remember next Monday it's the start of your week at [the residential home].' She normally says, 'I don't think I'll go this time.' So we then have to have a discussion where again I say 'You know the reason why you go to [there]?' and she'll often say 'Yes, it's to give you a break.' You know and I'll say to her 'You like, you enjoy being there and you know we always, look forward to meeting each other again and have a really nice time when we come, together.' So it's that kind of.

But she forgets from day to day and then on the day itself I will say 'You remember this is the day we're going to [the residential home]?' Now, this last time there was simply no problem at all, on the day, she was quite happy for me to pack her case, she herself pottered round and got things ready. Made suggestions about the things that she would like to take.

I've tried to, I've tried to keep up the kind of standards which [my wife] would have, would have insisted on when she was in full health. So, for example, I try to make meal times as, as pleasurable as I possibly can. We, I try to ensure that we set the table as nicely as we can we have wine to drink with our meals. I usually have some of her favourite music playing in the background. So we make, we try to make an occasion of most of the meals that we, that we have. 

I think that would be, and particularly, our favourite meal is breakfast which we always gave ourselves time to, to enjoy, even when we were both working, even when the children were at home. And that's something that we still experience in quite a formal sort of way. Again with, with music playing in the background and so on. So you know, it, it becomes something which, which gives us both real, real pleasure, that would be an example I think.

Have any been difficulties with your wife taking medication and if so how did you deal with it?

On the whole that's gone quite well. And particularly once we settled down into, a regular pattern, of morning and evening tablets. Occasionally she is reluctant and, what I usually say to her then is, remind her why she's taking them, that these are designed to essentially to make her feel calm and, and, and content and as relaxed as, as possible. And it is important that she takes them and that these tablets have been, recommended by her consultant, who she has a great respect for. And normally she will then, take them although she says they're horrid to take.

So I don't think there have been any particular difficulties at all. Occasionally when she's in a particularly stressed state she's absolutely refused to take them and on one or two occasions she's thrown them across the room, and at both points I've simply let it go for that time and when she's calm we resume the, the normal pattern of, of taking tablets.

What do you think in general about surreptitious medication?

I mean I would be very reluctant to do that, I think you know you have, you have to try to be as honest as you can, and I think you have to keep talking to the patient about why they're, what the drugs are, what they're doing. What they're, when they should be taken, without dwelling on the, you know, too much on the, the nature of the illness.

And I've found that that has been sufficient. I would be I think very unhappy, if I was having to do it surreptitiously. I think particularly, I felt strongly about the sedatives that she's had for a time when she was in a particularly anxious state. And, it was tempting to slip that into a cup of tea or something when she was really angry, but I didn't do that. And interestingly, she quite often said in a fairly terse way 'Oh you're, you're trying to keep me calm are you?' or something like that. So she knew exactly why, what they were for and in a way intuitively understood why at a particular point she was taking them, and I, you know I'm, I'm happy with that. So I'm really against anything being done surreptitiously.

Why's that?

I just think you have to try to be, let me start again. I think our marriage has been based on being truthful and honest and open with each other about everything. We've, I don't think we've had any secrets from each other at any time. And, I just felt I wanted to maintain that kind of quality of relationship between us. So it would have come very hard indeed to, to have been doing something which was quite against the way that we'd operated in the last forty years. It's as simple as that really.

I think you have to be terribly flexible, I think its no good having any kind of set idea of how things are going to go. The life for a carer for someone with dementia is so, uncertain, that I think you don't have to be worried if things don't go according to plan, you have to change your plans, your ideas, you timetable almost from minute to minute and I think that flexibility's quite important.

I think you have to be able to find your pleasures in small everyday things. Many of the, large elements in a relationship, in a marriage maybe have gone. For example for us I think maybe holidays are no longer going to be possible.  Who knows maybe we'll find a way of solving that problem but at the moment that looks to be unlikely.

Therefore, you have to sort of look for things that will give you, that will give you pleasure on a, on a day-to-day basis. It may be just a walk in the park, a really nice meal, listening to a favourite piece of music, those kind of things, small everyday things that just give you pleasure, both of you pleasure from, from minute to minute.

And I think trying to find opportunities to laugh and that's not always easy to do but, if you can I think, it just helps to lighten the burden I think.

What I did was to deliberately make contact with one or two friends that we hadn't seen for some time.

And the response in every case was, was very interesting and was actually quite similar. They were all immensely relieved, very pleased indeed that we'd, that I'd made contact. Said, I think all of them that I spoke to said 'We didn't quite know, we wanted to make contact with you, but we didn't quite know how to do it, or whether you would welcome it, or whether [name] was able to meet up with us again. We just didn't know how to play it at all, and we're so pleased that you made the first call.  And we'd love to come and see you, or you must come over and see us.'

So we've picked up again, in some cases with people we haven't met for a number of, a number of years, and that's been, has given us both great, great pleasure, and I'm hoping that we can go on doing that. So I think that what I want to say about that is, is that, if you're in any doubt as a carer whether you should pick up a telephone and talk to old friends or not, I would say do it.

I can only think of one case where I think the message I got was perhaps we don't want to know about this you know, OK, and I understand that. But in general it's brought us a good deal of, of pleasure. So things are slightly better than they were a few months ago.

But of course, at the same time you do make new friends, people in the same situation and those have been immensely important to us, and are as, are as dear to us now as some of the friends we've had for the whole of our married life. So that's important as well.