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Interview 31

Age at interview: 57
Age at diagnosis: 56
Brief Outline: He gave up work to be a full time carer but when she took to her bed for several months it was decided that she needed residential care. As she refused, it was necessary to section her to make the transfer possible.
Background: Carer is a husband in his 50's looking after his wife with Picks disease. They have three children.

More about me...

 

Was slow to recognise that his wife was developing Alzheimer's.

Was slow to recognise that his wife was developing Alzheimer's.

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Going back and starting from the beginning in hindsight, now the first stage is, is not recognisable I think, or certainly wasn't recognisable as far as I was concerned initially - which were mainly the behavioural changes that were taking place. And that's prior to the diagnosis because one is just not aware. And I was certainly not understanding either to acknowledge the fact that my wife was at the beginning of a serious problem, a serious mental health problem.

So that's, that's the first stage. Once I realised then, once it was diagnosed then I think that if I sat down and gave it serious consideration I could probably categorise it into three or four stages up to this point' pre-diagnosis. From the diagnosis a gradual change of the things that were happening, loss of remembering things, loss of names, loss of word recognition, loss of words relative to putting a conversation together, not recognising things in the shop, buying a tube of toothpaste or washing powder every time we went to the shops. 

It wasn't until I went into the cupboard at one stage to get a tube of toothpaste out that I saw that there were seven tubes of toothpaste, new in there. My wife was buying a tube every time she, or virtually every time she went shopping, so there was a lack of recognition of understanding the need for purchasing. She knew we had to have it but she didn't know we'd got sufficient in the home.

She couldn't recognize her vegetables. I said one evening, she cooked me liver for a meal and I said how nice it was and then I had that for the next three nights on the trot. And so she was obviously trying to please and still understanding that she was pleasing but not understanding the fact that she wouldn't normally have cooked me liver four nights consecutively.

So I think on hindsight now the changes initially were difficult to recognise, difficult to interpret because you didn't know there was a problem. Once I knew there was a problem and you began to understand the changes that were taking place and they became more frequently. But because I was with [my wife] continuously I think I was likely to less recognise some of the changes that were taking place than people that saw her less regularly because I was more understanding of the changes and recognising the changes but not always recognising the speed at which some of them were occurring.

 

Recognises why a consultant is unable to predict how the dementia will progress.

Recognises why a consultant is unable to predict how the dementia will progress.

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So I think that relative to stages it's very difficult if not impossible to say that during the first year this happened; during the next year or eighteen months that happened and to actually put the changes that occur into a time scale, which is drastically what I tried to do and wanted to do with the consultant early on. I now fully understand why he couldn't give me much indication other than tell me the likely overall happenings that would occur without a time scale.

I don't know if there can be, I suppose there can be a totally worse next stage which some of the people in the nursing home are, probably in which is total non-understanding of anything or of anybody, not taking any notice of anything or anybody. Perhaps just walking about totally aimlessly and not having any indication at all of any of the - I'm not sure what word I'm looking for - faculties of life, what life is or any of the things that we take for granted' understanding, speech, recognition, acceptance, accepting, giving, all those things that we take for granted and eventually go.

So I think that if I sat down I could probably pinpoint certain changes within a rough time scale or a time span that it's changed over. That would be for [my wife] but that wouldn't necessarily be for any other person that's suffering with. with Alzheimer's.

I think perhaps some of the changes would be identical like the loss of speech, like the loss of understanding, language, like the lack of, loss of, of becoming incontinent. I think they would be applicable to everybody but within there I think whether a person becomes aggressive or non-aggressive I don't think anybody can really predict those changes, those happenings that will occur.

So from my own experience I think I would summarise the question by saying there are distinct changes that occur within time spans but those changes that occur and the time span, the changes that occur within a time span could differ from one person to another who is actually suffering from, from Alzheimer's. And I, there might be a rough overall pattern of the main changes that I mentioned, like loss of speech, loss of understanding of words, lack of communication, incontinence, we might be able to categorise those as specific thing but I think the behavioural things that happen might vary from one person to another.

 

Realised that his wife was staying in bed because she had forgotten where her clothes were.

Realised that his wife was staying in bed because she had forgotten where her clothes were.

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I think that I could have received a lot more support and a lot more information which indirectly could have helped my wife because once I started reading about dementia and understanding some of the problems then I could face, not face my wife, but I could face the situation a lot easier. And certainly reading from other people's experiences like for example once my wife didn't get out of bed it didn't enter my head at all that she might have forgotten where her clothes were. 

And I read an article in a magazine where somebody had, had the same problem and the wife had actually got the clothes out for her husband and put them on the bed and helped dress him. And that hadn't entered my head at all that my wife might no longer know where her clothes were or indeed what sequence to put her clothes on. And that simple little article helped me a lot because I then got clothes out for my wife, when she wanted to get up, helped her dress. 

 

He gradually accepted that she would no longer do the things she used to do.

He gradually accepted that she would no longer do the things she used to do.

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My wife loved having her hair done and it was at the, when she didn't want to go to have her hair done that I realised that she then had I think gone into another stage, if there are stages within Alzheimer's which I believe there are. We had to have the hairdresser to come in because she still wanted to look nice and took pride in her appearance.

And in the last six months that she was home with me she hardly went out at all. For about the last four months she didn't get up out of bed at all. And with the poor diet and no exercise she eventually got to the stage where I had to call the doctor in because she was collapsing. In the last two weeks that she was home I had tremendous problems. I didn't go to bed at all, listening for her to get up out of bed. I had to support her to the toilet.

 

It helped to know why she was having problems taking part in conversations.

It helped to know why she was having problems taking part in conversations.

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Conversation with neighbours, with friends and relatives changed because now I realise that she was losing her vocabulary, losing the understanding of words and therefore finding it difficult to have a conversation. After the diagnosis that became easier to understand and accept, and at least I could then explain to the people what was happening with my wife and the, the behaviour, the behavioural changes that were taking place.

 

Describes why it is important that the carer remembers his own needs as others may not be aware of them.

Describes why it is important that the carer remembers his own needs as others may not be aware of them.

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I think that it's very easy to run yourself into the ground, keep going at all costs and that cost might well be your own health. So I think it's important too that you've got to take care of yourself otherwise you're not going to be in a position to carry on caring.

So it's important that you look after yourself by eating regularly. By having time out, it's important to get time out to get away from the caring role, which eventually becomes twenty-four hours a day. It's very important to get out and if you can to relax, enjoy yourself and still accept that there is a life outside the caring role.

So apart from being a carer and taking care of the person with dementia you've also got to care for yourself. And that no matter how friendly, how kind neighbours, relations, family are, when they go you are still caring. And they don't always want to understand, do not always understand the situation that you are both in. And it's sometimes difficult to accept that they haven't understood the situation of your partner, or indeed of the carer and have sometimes looked, said things which might have hurt a little bit because of the behaviour that they have, have experienced. 

I think you've got to try to understand that perhaps the carer and other professionals are the only ones who can understand what the carer is actually experiencing. And we as carers should not expect that friends, relatives and other people will understand the situation that we are, actually in.
 

 

Faces up to the loss of the very little that still remains of the person who was his wife.

Faces up to the loss of the very little that still remains of the person who was his wife.

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Other forms of communication, verbal communication, have virtually gone. She can't, she can say words but they're not put together to make any sense. So it's virtually impossible to verbally communicate. So I, that must be another stage or another happening. And that I am sure is probably only going to, get worse, because even the few words that she can remember and string together incorrectly will, probably go.

I have tried reminiscing with her and that doesn't appear to work. I've talked about our children, she can't remember the children, she doesn't recognise them when they go in; she doesn't know their names. I've tried to reminisce using old photographs and that doesn't register. I've tried to reminisce talking about our past and that doesn't register. So communication becomes very, very difficult. Which, is another stage.

So I think that relative to stages it's very difficult if not impossible to say that during the first year this happened; during the next year or eighteen months that happened and to actually put the changes that occur into a time scale, which is drastically what I tried to do and wanted to do with the consultant early on. I now fully understand why he couldn't give me much indication other than tell me the likely overall happenings that would occur without a time scale.

 

Describes why he feels it was inappropriate to refuse to include him in the investigation of his wife's problems.

Describes why he feels it was inappropriate to refuse to include him in the investigation of his wife's problems.

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I think perhaps the most difficult thing there is that none of the hospitals appear to be geared up, geared up perhaps is over-stating what I mean, but understanding of people with any form of dementia. They just assume that people are OK mentally and if they're not then there doesn't appear to be any way in which they can cope within the system.

And certainly on several occasions when my wife was being asked questions, questions which the person answering wouldn't know whether they were right or wrong, by me being there and knowing it was my wife, and knowing they were wrong, I found that they were pretty reluctant to actually talk to me. And on several occasions I had to say 'That is not the situation between my wife and I.'

For example, they were asking my wife if she had sex and she said 'Yes, regularly.' I knew full well that we hadn't had any sex for a number of years. I knew it was the wrong answer. But the person asking the questions wouldn't know that it was a right or wrong answer. That's only one example of the type of questions that were being asked that I knew full well from sitting there that my wife was giving an incorrect answer. Which again the person answering, asking the questions wouldn't have had a clue whether it was the right or wrong answer.

So I think that, and indeed I did make one recommendation to one consultant that we saw that it might not be a bad idea to have a set of questions for the carer, if they're a close carer, not necessarily the same questions that they were asking the person that they were asking the questions of, but asking if they had experienced any behavioural changes. And indeed I did sit down - I haven't got a copy now, but I wish I had - but I did sit down at one stage and list all of the types of changes and it, and experiences of the changes that had taken place with my wife.

And I did suggest that it might not be a bad idea to ask the carer questions as well. Because I am sure that the carer can give a lot of information about the changes because they're the one that's seeing and experiencing the changes that are taking place. Which could perhaps help earlier with a diagnosis. I'm not sure if it could help with diagnosing what form of Alzheimer's it actually is. You might even be able to do that or, or help along the way.

But I found that a number of the hospital staff were not taking any notice of what I wanted to say sometimes for and on behalf of my wife and sometimes to assist the person answering the questions to, get more of an understanding of what the situation was, really was. Than what they were getting from asking my wife the questions and didn't realise until the latter stages that my wife was saying yes in some places and sometimes it was a yes; but in other cases it was a yes and it should have been a no.

But she was sometimes not able to interpret the words or indeed understand what she was being asked, to understand, to be able to give an answer to the question. So I think I, one of the biggest problems I found was one, hospital staff not understanding people with dementia and two, when you are in a situation where they could get more information from the carer to help with the diagnosis they were not doing that.

I think that, once the diagnosis is made I'm not sure if a consultant or any of the researchers have a responsibility to do it, but once a diagnosis is made I think that's probably where communication ought to start to help the carer. Whether that communication, I assume that it goes back to the GP, we didn't see the GP anymore after the diagnosis from the consultant.
 

 

His wife went through a brief period of heavy drinking - he wonders if this was a sign rather than a cause.

His wife went through a brief period of heavy drinking - he wonders if this was a sign rather than a cause.

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No, I've no real understanding of what actually caused it. My wife's father did have dementia towards the latter part of his life but he was certainly in his latter seventies. And, I think that was part through an operation that he had that went wrong that we understand did affect him in some way mentally. He was never ever diagnosed with any form of Alzheimer's. His sister in her seventies also had a mental health problem. So whether there is anything hereditary from my wife's side of the family then I'm not totally sure.

Before it was diagnosed my wife did have a spell of drinking alcohol and she did not previously consume much alcohol at all. The occasional drink at a party or a celebration or a glass of wine if we went for a meal. But she did go through a spell where she started drinking quite heavily and that was probably within the, a year prior to us going to the doctor's. She did stop the drinking. Whether that had any effect I don't know, and she was drinking quite heavily - a bottle of gin within two days, every two days or so. And I couldn't stop her doing it; there was no other rhyme nor reason that she was doing it.

We had no family problems; our marriage was good; we had good relations with all our children; we had superb grandchildren which she loved, and had brought one of them up virtually. So there were no family problems; we had no marital problems; we had no financial problems so there was no other reason that I could establish why she started drinking but she did drink quite heavily for a period of time.

But that had stopped when we went to the doctor. Whether she was aware that she had a problem, and I was not aware at that stage, I'm not, sure. So in, I can't put any reason on why [my wife] was diagnosed with dementia, especially at an early age - of 56 or 57 which is generally a youngish age to be diagnosed with Alzheimer's. So no I can't really put any reason behind it.
 

 

Has learnt a lot about how to cope through other carers and a helpful CPN.

Has learnt a lot about how to cope through other carers and a helpful CPN.

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I think that I could have received a lot more support and a lot more information which indirectly could have helped my wife because once I started reading about dementia and understanding some of the problems then I could face, not face my wife, but I could face the situation a lot easier.  

And certainly reading from other people's experiences like for example once my wife didn't get out of bed it didn't enter my head at all that she might have forgotten where her clothes were. And I read an article in a magazine where somebody had the same problem and the wife had actually got the clothes out for her husband and put them on the bed and helped dress him. 

And that hadn't entered my head at all that my wife might no longer know where her clothes were or indeed what sequence to put her clothes on. And that simple little article helped me a lot because I then got clothes out for my wife, when she wanted to get up, helped her dress. And that was because, simply because through the Net, through purchasing books and booklets I found out that information.  

So I think that simple little experiences from other carers can make the carer think the way in which they can best help the sufferer and it's trying to, I found that I had to try and think on behalf of my wife and for my wife because she was now longer, no longer able to think for herself. And it's putting yourself in their position and trying to understand the difficulties that they have then I found the more you can obviously help them.

Most helpful I think I have found reading experience and articles of other carers. I think that, just the simple little experiences like I previously mentioned about the clothes, about food. They're the most helpful things I found.  

I found the support from the CPN tremendously helpful once we had a CPN allocated. And although the CPN theoretically is for my wife he spent a lot of time giving me support and help. And I got a lot of advice, a lot of support from him, so I think the two most helpful things have been reading articles and the support of the CPN.

 

Describes the circumstances leading to his wife being sectioned.

Describes the circumstances leading to his wife being sectioned.

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And in the last six months that she was home with me she hardly went out at all. For about the last four months she didn't get up out of bed at all. And with the poor diet and no exercise she eventually got to the stage where I had to call the doctor in because she was collapsing. In the last two weeks that she was home I had tremendous problems. I didn't go to bed at all, listening for her to get up out of bed. I had to support her to the toilet.

The doctor came in and didn't do an awful lot. I had, I mean the doctors and the nurses came in and it wasn't until after about a fortnight that one of the nurses said 'you have to, she has to go into hospital.' They came for her at half past seven on a December evening which there was no way that she was going to move, she wouldn't go. The ambulance drivers refused to take her.

The following day the senior consultant, the doctor and a senior social worker came and asked if I'd mind if they would section her and, and that way they could take her away to ensure that she got the, the support that she required relative to her diet etc.

That was December '98, and she went in for an assessment and the assessment was that they thought it best if she had nursing care. So she has now been in a nursing home for about two and a quarter years.

 

Could afford to pay for his wife's residential care and was given little help claiming funding...

Could afford to pay for his wife's residential care and was given little help claiming funding...

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But coming back to the problems, I think it was the fact that I did not want to face and found difficulty in facing the form filling for the various grants that are possible. Perhaps it was part my problem because finance wasn't a key issue to me. I could look after myself and my wife financially while she was at home and indeed if I had to pay the full amount when she went into the care home I could cope with that OK.  

So it wasn't a problem but I found that the lack of information relative to the grants that were available which would be very, very important to some carers, especially if they had to give up generating an income. And the lack of information, the lack of guidance in what grants are for, what grants the carer is able to claim for and indeed some of the complexity of, of completing those forms. I'm relatively average intelligence I suppose but I could understand that if a carer was a lot older than I am, that could cause far more problems for them than, than it did for me. So I think they were the difficult things as a carer that I had to face.

 

Denying carers important support by not giving them any information about for example the Alzheimer's Society.

Denying carers important support by not giving them any information about for example the Alzheimer's Society.

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I think perhaps there could have been a lot more liaison for, for the support that is available, specifically at the earlier stages. There doesn't appear to be any communication at all between any of the services or the support services. I didn't even become aware until the Alzheimer's, that the Alzheimer's Society existed until my wife was actually in the, in a care home.

So I think that for carers there ought to be some sort of procedure, system, communication between the specialists that are diagnosing, between the doctors, between whoever we saw to ensure that the carer is eventually made aware of the services available. Because from my own personal experience when I did find that they were available and from talking to other carers now within my role, they all think they're coping OK. They usually aren't aware of the support that is available to them. And they feel very, very much on their own and if they're asked if they're OK I would guess and say that nine out of ten would say that they're OK when in actual fact they're usually struggling. And that's from my own experience and indeed talking to other carers now.
 

 

Describes his wife's moments of lucidity and exhorts people not to feel guilty for their deficiencies as carers.

Describes his wife's moments of lucidity and exhorts people not to feel guilty for their deficiencies as carers.

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Yes, so even, even, even though we know that the situation is going to get worse and that it's a long, long gradual slippery slope or decline, then I look for the positive things that I can. Now I'm not caring as a full time carer but my wife is in the home and when I visit her I suppose, I don't know ninety-nine percent of the time it's difficult to communicate but it's just a question of perhaps satisfying myself that I know I've been and that I'm still caring and I'm still her husband.

But on that odd one percent when the positive thing comes out like when she does, the odd occasion when she mentions my name or she might mention something that is recognisable then the positive things are the things that I want to hang on to. And certainly remember and come away with, not the fact that after two minutes she doesn't want to see me because she doesn't recognise me and wants me to leave. But I hang on to the positive things now.

And that, I think that's important for a carer to do is to attempt, which is difficult, very, very difficult, but attempt to turn off from the fact that she might drink out of anybody else's cup or eat anybody else's food if it's laying around because that's just part of what's happening. But that one thing might come out like a kiss or a name or a slight recognition, are the things that we've got to hang on to because eventually that will go as well.

So I think, it's very difficult to think positively in a very, very, very negative situation. But I still think that the carer has got to try and think positively. And I think one of the important things of a carer is not to feel guilty. And it's easier to say than to do because on lots of occasions, and I still sometimes feel very, very guilty, perhaps of the things I didn't do, or perhaps of the things I didn't say.

But I thinks it's a, a carer should never, never feel guilty if they have done what they think is right throughout the period of time that they are caring. It's very, very easy to be negative and not to be positive about what you've done because you always think you haven't done enough. But never feel guilty. And always, I was going to say pat yourself on the back for being positive, that's difficult to do, and I don't mean pat yourself on the back, but think of what you've done as positive and not negative.

 

Getting a diagnosis provided an explanation for apparent changes in his wife's personality.

Getting a diagnosis provided an explanation for apparent changes in his wife's personality.

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Initially, before the diagnosis, I found it difficult to understand what was happening with my wife. She was never ever a selfish lady, she began to get a little bit selfish, like when we had the food she would want hers first, even before the grandchildren, which was totally not her. I've already said that her diet changed tremendously.

Conversation with neighbours, with friends and relatives changed because now I realise that she was losing her vocabulary, losing the understanding of words and therefore finding it difficult to have a conversation. After the diagnosis that became easier to understand and accept, and at least I could then explain to the people what was happening with my wife and the, the behaviour, the behavioural changes that were taking place.

Early things I noticed before the diagnosis were things like when I'd cut the grass it was never short enough, or it wasn't the fact that she was pleased to see something done, it was always what I hadn't done, which was not her at all. There were lots of behavioural changes that took place initially.

One of the things again apart from her not becoming aggressive, one of the positive things was that she always took pride in her appearance; she was always immaculately dressed. She wanted to go out when she wanted to go out, I could be working in the garden and asked her if she wanted to go out on that day and within ten minutes she'd come down immaculately dressed and wanted to go out. And although I'd asked her ten minutes before if she wanted to go out, she'd changed her mind within that time, or she didn't understand what I was saying when I was asking her if she wanted to go out.

 

It is becoming increasingly difficult to communicate with his wife who does not recognise her children or remember past events.

It is becoming increasingly difficult to communicate with his wife who does not recognise her children or remember past events.

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She's now, she was incontinent at home but she's now totally incontinent. That's another stage that, that is reached. Now she doesn't understand the conversation that I have with her, there's only one way that, no there's more than one way that I can communicate with her because we still have a cuddle; we still have a kiss. But numerically her brain is still OK. She, if my car's parked outside she'll count the numbers on the number plate. If she's in her room we'll go round and count the number of photographs that there are and she has no difficulty in, in doing anything, I'm not sure about doing anything in numeracy because I haven't tried to multiply or divide or anything but certainly counting she does not have a problem. So we communicate there.

Other forms of communication, verbal communication, have virtually gone. She can't, she can say words but they're not put together to make any sense. So it's virtually impossible to verbally communicate. So I, that must be another stage or another happening. And that I am sure is probably only going to, to get worse, because even the few words that she can remember and string together incorrectly will, will probably go.

I have tried reminiscing with her and that doesn't appear to work. I've talked about our children, she can't remember the children, she doesn't recognise them when they go in; she doesn't know their names. I've tried to reminisce using old photographs and that doesn't register. I've tried to reminisce talking about our past and that doesn't register. So communication becomes very, very difficult. Which, which is another stage.

 

Has difficulty deciding appropriate behaviour now that his wife no longer recognises him but could live another twenty years.

Has difficulty deciding appropriate behaviour now that his wife no longer recognises him but could live another twenty years.

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The only other thing that's affected, which is currently going on which has happened recently is that I have, taken a lady friend out for dinner, taken her out on several occasions and my daughter cannot accept that, will not accept that. And that has vastly affected the fantastic relationship between my daughter and I.

I've tried talking to her. She just will not listen. She is not trying to understand in any way, shape or form. Although I can understand, her feelings in that, her mother is still here and I'm taking another lady out, what she will not I think accept or at least try to understand is that I'm still relatively young. She knows I love her mother and my wife dearly, but she is not accepting that taking another lady out on social occasions or for a meal is, she will not accept that's something that I could do or indeed I should do.

And over the last couple of months our relationship has deteriorated through her doing because I've tried desperately hard to talk to her and she won't listen to me. That has affected the relationship with my daughter. As far as I'm concerned it's part of trying to live a normal life.

And I think my daughter is considering that her mum, my wife has, I was going to say only been in the nursing home two and a quarter years, she's been in the nursing home two and a quarter years, and my daughter doesn't understand that it's been, I think the diagnosis was five, six years ago now, that we didn't have a normal - I'm not sure if that's the right word - yeah our marriage changed from what it was some ten years ago. So it isn't just the two and a quarter years my wife has been in the nursing home which I think is what my daughter is seeing. For me it's now some nine, ten years that the marriage with my wife changed.

And I now see it as I think we only have one life, I don't know, I've no evidence otherwise. I'm still not official retiring age. My wife could live another twenty years. I doubt very much if, my wife will probably outlive me and I toyed with the idea for some time that marriage is till death so us part. And I think that my wife as she was is no longer.  

 

Get all the support you can and preserve your own health if you want to continue as a carer.

Get all the support you can and preserve your own health if you want to continue as a carer.

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On hindsight I think that the carer should seek all the support that they possibly can from whoever is available, whether it's a CPN, whether it's from a branch worker from the Alzheimer's Society, whoever it is. Because I certainly thought all the way along the line that I was coping OK, and, and perhaps I was. But there are certainly times when you wonder if you're coping OK. You're wondering if you're doing the right things. Not only for the person that you're caring for but also for yourself. I think that it's very easy to run yourself into the ground, keep going at all costs and that cost might well be your own health. So I think it's important too that you've got to take care of yourself otherwise you're not going to be in a position to carry on caring.

So it's important that you look after yourself by eating regularly. By having time out, it's important to get time out to get away from the caring role, which eventually becomes twenty-four hours a day. It's very important to get out and if you can to relax, enjoy yourself and still accept that there is a life outside the caring role.

So apart from being a carer and taking care of the person with dementia you've also got to care for yourself. And that no matter how friendly, how kind neighbours, relations, family are, when they go you are still caring. And they don't always want to understand, do not always understand the situation that you are both in. And it's sometimes difficult to accept that they haven't understood the situation of your partner, or indeed of the carer and have sometimes looked, said things which might have hurt a little bit because of the behaviour that they have, have experienced. I think you've got to try to understand that perhaps the carer and other professionals are the only ones who can understand what the carer is actually experiencing. And we as carers should not expect that friends, relatives and other people will understand the situation that we are, we are actually in.

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