Guide When Goodbye Begins: Sharing Life With Dementia

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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? 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? At that stage he thought it was depression. One daughter remembers her mother falling out with people as a result of muddling arrangements.

John Bailey didn't believe that Iris Murdoch was developing Alzheimer's disease until she failed to realise that a lecture she had given had gone disastrously wrong. It had become evident by that she was in some difficulty living on her own. She was falling out with people that she'd been friendly with a long time. She was blaming people for things that I think she'd done herself or that hadn't been done that she thought she'd done and then, I mean for example putting her name down for an outing.

She would say she didn't want to go so her name wouldn't be put on the list and then she would turn up for the bus with everybody else and be very upset that she wasn't allowed to get on it because she hadn't put her name down and there was no room. And she would say that she had put her name down and that somebody had crossed it off. One thing I think is important in the early stages of Alzheimer's is that I think if you are very close to the person, if you're the wife, the husband or even the mother or the father or the children, you may not notice things as quick as the outsider.

I, in fact the first person who I think really saw that something rather strange and perturbing was going on was my present wife who was a great friend of Iris. We, she and her husband and Iris and I had been sort of a foursome we'd done a lot of things together and been very close. And after the death of her husband we saw [present wife] very often and she was extremely kind and helpful. And I think she was the first person to see something was a little unusual in Iris's behaviour.

I think, I think if you're the wife or the husband on these occasions you tend to take things rather for granted. Even unusual behaviour doesn't necessarily bother you, you just say oh well that's the sort of thing he does or she does sometimes. I think quite rightly [present wife] didn't say much to me for a while but she once or twice, when we were staying with her, she did mention the fact that she wondered if we, I'd better take Iris to a doctor.

I was rather surprised by this. I mean I, and as our doctor was a busy man and was more concerned naturally with health than with the mental state of the patient, I didn't do anything until we went in to Israel to take part in one of those sort of discussions, a general kind of cultural programme. And Iris was always very good on those occasions, she loved talking to people, she loved answering questions, it was her favourite form of participation. She wasn't so keen on giving a lecture herself, she didn't have to give a lecture but she would have been excellent at discussion and question answering.

However, on this occasion she was rather, curiously tongue-tied and sometimes unable to see what the questioner was asking and to reply very coherently. I was a bit bothered about this and remembered what [present wife] had said about it not very long before. And after the programme so to speak, which was not a success from our point of view at all and the Israeli audience got rather sort of restive, bored and a bit impatient. An Israeli author, a very nice man whom I got to know later on came up to me and said 'Is anything wrong with Iris?

But when we got back I did think we'd better see the doctor. And our doctor didn't take it very seriously but he said, and we were talking the three of us, he suddenly said to Iris, 'Iris, who is the prime minister? Iris looked rather baffled and amused too and said 'Well I don't think I know but does it matter?

Often explanations are invented to try to account for unexpected behaviour. For instance one carer described her initial reaction to the difficulties her elderly husband seemed to be having first with reading and then with talking. In the early nineties I became aware that my husband was getting a little bit less quick on making decisions or remembering things. He was older than I, so he was then in his seventies, well early seventies, and I just thought oh he's getting on a bit you know.

But it was clearly more than that, after a little while I realised. And he was also becoming increasingly concerned about his eyesight, having lost the sight of one eye during the war, and the other not very good. Looking back I now realise this was because he was beginning not to recognise letters and it was the beginning of him not being able to read signs or the newspaper quickly and things like that. At the time I just thought he was possibly having more problems with his eyes, but this turned out to be, it turned out to be the case but wasn't related to what I now feel was really wrong with him.

His speech also became very, less clear. He'd always been a very clear and decisive speaker using the right words and, and syntax and everything. So there was, he used to stumble for a word - a perfectly normal word, nothing peculiar - and not being able to grasp what had been said to him very quickly. And after about a year I thought maybe he'd had a slight stroke. So I took him to our GP who sent him to a, I think he's called a geriatrician, who gave him all sorts of tests and came to the fact there was nothing wrong other than the possibility of the beginnings of, dementia.

He suggested taking an aspirin every day to stop any deterioration, or help with any deterioration, which he did. And this went on for some years with him getting steadily worse and in the end very much worse. One of the commonest mistakes made is to confuse early Alzheimer's disease with depression. It is often not difficult to provide reasons why someone might be depressed' the death of a husband, a car crash, moving house, losing a job, or a previous history of depression. In some cases the event itself may have been part of the early presentation of the condition. For instance one man who may well have lost his job because he was in the early stages of Alzheimer's was diagnosed as suffering from depression.

This mistake is particularly likely to happen when the person developing dementia is young. It really starts in the summer of 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? 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. 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. Looking back why did it take two years of problems?

He was diagnosed as having endogenous depression for which he took the appropriate pills. Because it turned out that the most significant thing that he couldn't do was to read the music especially tracking from line to line. But to go back to the question, why did it take two years, I think for someone aged 50, dementia was not on their agenda, so a whole lot of other things had to be ruled out.

Eventually when he went to [town] and got lost driving in familiar surroundings, then that really rang alarm bells and I took him straight off to the doctor again. In some cases there was evidence that the person developing Alzheimer's was aware that something was happening to them that they were unable to explain. 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? 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?

See a Problem?

Have I got Alzheimer's? 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. She realised there were big problems coming and she was very worried about it and that's what she said. One carer expressed relief that her husband's condition had deteriorated meant that there was less risk that he might be aware of what was happening to him.

Another expressed fears that for a diagnosis to be given early in the disease might result in the patient wanting to kill themselves. Moving house or even staying somewhere unfamiliar sometimes seemed to expose difficulties which had not previously been recognised. Sometimes a holiday lead to what seemed to be the first symptoms of dementia. One carer described how she thought her husband was joking when he woke up while on holiday in Rhodes and seemed not to know who she was.

A daughter whose mother was fiercely resistant to any suggestion that there was a problem describes her getting lost on the way home from Australia and ending up in Greece. One time my mother decided to go to Australia for Christmas, because Christmas is always a problem in our family with my parents being separated. So, this particular year, I think it was about , mother decided to go to Australia for Christmas to spend Christmas with a nephew, flew out there. Ten days later decided she didn't like it and was coming home again.

So they had to phone us from Australia, to say she was coming back. We, my sister and I, went to meet her at the Heathrow and she never arrived. So after meeting three planes and she wasn't on them, we didn't quite know what to do, so we came back here and I reported her missing to the local police. And the Police said that if we haven't heard anything in twenty four hours, we'd get Interpol. Anyhow, at quarter to five that night, my sister's daughter phoned and said the British Consul in Athens has found granny, can someone go out and rescue her? I think the cheapest way to go out to Australia was to go to Athens and then change planes.

"When Goodbye Begins: Sharing life with Dementia" : Book Review - Alzheimers Support

They were absolutely marvellous. I went on the half past eleven plane from Heathrow, picked up the tickets there. But the British Consul couldn't hang on to her because she had to go to a 'do' at the Embassy, and mother wouldn't go to a hotel. So in the end she put her in an all night police station. She gave me the address, so when I got to Athens, I grabbed a taxi, showed the taxi driver this address and he took me to this police station. He was very good. He waited to make sure that the police let me in and they had barricaded the door to keep mother in.

And so at half past six in the morning I picked her up and we were wandering around Athens trying to look for her suitcase. There were times, he admits, when he lost control and seized her roughly, shouted at her and left the marks of his grip on her skin. The howl of guilt that follows is the sound of a man hurting the thing he loves. But there are funny-sad episodes as well.

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Bonnie, now 69 and once so fashionable, long since lost her sense of dressing appropriately. One morning, after instructing her to stay in bed while he makes the morning tea, he returns to find her fully dressed. Bewildered, she agrees to take off the boots and the skirt and they sit up in bed sipping tea, he in his boxer shorts, she in a beret and cashmere sweater.

He manages to show the worst dementia can do without compromising her dignity. As the disease advanced, Bonnie stopped using their familiar endearments — love, darling, sweetheart — and started to call him John. Given what had gone before, it was unbearable to think it could come to this.

To find she was no longer his confidante was even more isolating. There is no better non-medical description.

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Some dementia patients become aggressive. This quality of acceptance, he says, was as true of her in health as in sickness. She took me by the hand and led me into the bedroom. They had been neighbours in Henley-on-Thames, both married with children.

Saying Goodbye

For a long time they behaved well. But the mutual attraction was intense and eventually they broke up their families to be together. He was 39 and she was I never really thought of having an affair. We just wanted to be together for the rest of our lives and nothing was going to stop us. We shared everything. Would he ever allow himself to form another attachment while his wife is alive? You start thinking: if it were me with dementia, what would I want Bon to do? Suchet, 66, son of an obstetrician, is cynical about supposed new findings about dementia.

Still stricken at having put his wife into a home, he endlessly rehearses the support he had.

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  • Now she is settled, he can feel the calmness in her, and in himself. In the latter stages of looking after his wife, Suchet felt close to having a stroke or a heart attack. It is well known that carers die before the person they are looking after. He would rather have been touring European opera houses with Bonnie. As planned. To want one woman and to live with her for 20 years and to have that love returned… I have nothing to complain of.