More about me...
Can see pros and cons to having a genetic test for dementia, just as she could for cancer
You mean to find out whether they're likely to get it? Well my immediate thought was good, that's great and then I think do I want to know. I mean I really would like to know, I mean I've always said if I've got cancer and it's terminal I would want to know. So in a way I would want to know, but on the other hand if I'm going to get it anyway is it going to make any difference?
I mean already I'm convinced I am going to get it, to be honest, and, not just because of my mother but because of, I don't know, I have theories of personality type and all sorts of things which may be completely unfounded but I'm sure I'm going to end up with it. So yeah I suppose it would be interesting to have it confirmed.
I once found a lump and I thought if I found a lump I would go to the doctor straight away but I didn't because for a little while I just pretended it wasn't there, and I went in and it was nothing and I haven't got it now. But, I think, I think it's a good thing, yes genetic testing I think it's nice to know you've got the choice perhaps psychologically, it would be nice to know that you have got the choice of finding out if you want to.
Like a lot of things, you know if you're on a diet and you know you can't eat chocolate you immediately want it don't you. But if you're on a diet and you can eat as much chocolate as you like then you've got the choice, it would be nice to know the choice was yours to find out if you wanted to. But whether I would actually find out.
I probably would actually, I probably would want to find out. But whether I'm going to get it or not going to get it I still have a vested interest in finding out what research is going on and what things ...
Carer recognises that her mother needs medication to relieve her anxiety but is unhappy that it...
If you can deal with the behaviour without the medication and you, have got experienced expert carers and nurses who are able to deal with it without the medication obviously that's better. But there comes a point at which they do need medication and my mother is on medication and 'I think it is right that she is on medication.
I then think that, what doesn't always happen is the medication is not always monitored enough and I think as with my mother's case and I am sure is the case with a lot of other people in a lot of homes the medication is used more than is necessary for the convenience of staff because it keeps people docile and it keeps them sleeping in the chair.
And I realise my mother needed medication because she was distressed all the time and anxious and worried and she, so she needed something just to take that edge off. And when I saw her sleeping, sleeping, sleeping, and very confused and I thought 'how much of this is Alzheimer's and how much is the medication?'
So I actually went to see her doctor. She is so lucky she has got this lovely young girl - I say young girl; she's probably in her 30s! - doctor, who is really nice and very thorough and very keen that we work together. And I hope I'm not a threat because we, are nice to each other.
And I actually made an appointment at the surgery and I went to say that, 'I just want your advice but I'm not sure, I just wondered, I don't know about these things, but I'm wondering if my mother is very heavily sedated and whether there was any mileage, whether they could lift the sedation and if that made her too agitated whether there was some sort of anti-depressant because I know anti- depressants can work in a different way, they make you easier about life.
She said 'Oh I see what you're saying. I don't actually know but I'll phone the psycho-geriatric specialist and have a chat.' And the message came back that he thought it was worth a try and so that's what they've tried and they've lessened the tranquillisers, given her an anti-depressant as well and it may change tomorrow, you know, gradually it may change but at the moment my mother has got back a better quality of life and she's not.
So she's talking, she doesn't talk sense but she's got the energy to talk. She'll laugh and when somebody will come up to her and say 'Hello' and she'll smile and if they say something that's a bit risqué she'll go 'Oh I don't know.' And that's how she used to in the old days, so she's got back a little bit of her self by the right balance of medication.
So I think if it's at all possible you don't use medication at all and obviously the professionals know better than I, when the medication should be brought in but I think there's a danger of it being used unwisely, indiscriminately if you like. And I think it's a shame that it can't be used more wisely that there aren't, well I think it's like education isn't it, health and education are under funded and under-resourced and undermanned. And in an ideal world if there were sufficient people looked after a limited number of patients then that sort of thing could be carried out. And I know in this hospice in [town] that's what happens.
I don't think it would have happened to my mother if I hadn't been there actually, I think she'd be, have a less better quality of life. Yes, there comes a point at which medication is definitely needed because she couldn't, it would have been cruel to let her live a life of anxiety all the time and she was pacing and worrying and eaten up with anxiety so she needed somet
Describes how it was impossible to expect her mother to manage her own medication.
There were times when sadly, I feel awful because we argued, I mean she'd say 'I haven't had my pills' and I'd say 'You have had them.' Which I shouldn't have done but she had this little pillbox and she'd come knocking on the door saying 'I haven't had any pills, I've got to have these pills, they're for my blood pressure, I must have them.' And I'd say 'Well you have.' 'Who gave them to me? You don't understand, I need to get to a doctor, you don't understand, I've got to have these pills to stay alive.' Then we'd go back with her and she'd come back ten minutes later.
So when we went to the psycho-geriatric specialist, he then suggested, I don't, I can't remember the medication but its an injection every fortnight. I said 'Oh that'll make her sleepy.' But I then, it's a learning process, I just feel I've learnt so much and I've still got so much to learn because as he said to me 'Surely its better for her to be slightly sleepy in her own home than not sleepy and worrying?' And I realised, you've got to get the balance, you don't want her too sleepy to enjoy some quality of life.
So anyway, we tried these injections but sadly my mother doesn't want to be injected by a stranger and the CPN found it difficult to inject her, but fine if I was there or my husband. So we did explain all the hours we could be there, I said I could come home early from work, but sadly, whether they forgot or whether they simply couldn't manage those times, but they still carried on coming hit and miss, and so we didn't know when she was being injected, when she was being visited by whom, and she couldn't remember.
It did seem I think probably soon after she'd been injected it probably helped and then it would wear off and then she'd get very agitated again.
Explains how she managed to get her mother to take her medicine in a glass of sherry.
She won't take it! Pills are worse, she won't take, she's never, never liked taking pills in her life, I'm like that. Unless I know exactly what it's for and why. And the only pill she ever used to take were her blood pressure pills because she knew if she didn't take them she could probably - 'Oh blood pressure, we were talking about that earlier' - she knew if she didn't take them she could have another stroke so that's one thing.
But now she's forgotten what they are but when you think about it we are taught from childhood aren't we not to take pills and certainly not to take them from strangers. So it shouldn't actually surprise anybody you know in the way it always seems to, it shouldn't surprise anyone that she won't take her medication. And so she's better at liquid so wherever possible, it's not the psycho-geriatric specialist himself but he's got sort of like a registrar who visits mum on a regular basis now and she and the doctor and I have talked about it and wherever possible, they've actually she changed the anti-depressant to another one that's very similar because she can have it in liquid.
So wherever possible they give her medication in liquid form and they give it to her in a little glass and we pretend it's sherry and I have a little glass and we'll go 'Cheers,' but they can't make her take it because it's not a nursing home so she doesn't take it. Sometimes I've been in and the glass is there and, as I say when, when she could cope with the phone they used to phone me if she wouldn't take it and I would talk her through it. But they can't do that now because she doesn't understand what the phone is.
But I have just been asked to write a letter and apparently the doctor is going to write one as well to say, give permission for her medication to be mixed in with her food. Which I've done because I know she needs it and I've put in the letter 'For her prescribed medication to be put in her food.' They didn't, they didn't ask me to put that but I'm afraid I've put it because I don't want anybody thinking 'Oh we'll slip something in because she's being a bit..'. So I've given permission for everything she's prescribed to be given in her food and I thinks it's just the Tamoxifen that has to be a pill; I'm not sure what they do with that perhaps they just crush it, I don't, I don't know. So yes it's an on-going problem the medication, a real problem.
Don't try to force someone to accept things. If you wait and try later you may have better success.
And another thing is the joy, one of the conveniences of Alzheimer's is if you say 'Would you like a drink?' and she'll say 'No I don't want to take it,' and you'll put it down. You can actually say it as if you're saying it afresh a couple of minutes later. Sadly the carers at the home where mum, don't all realise that, they'll go on reasoning. 'You must take this because it's going to make you better,' and she's lost it, she's lost her powers of reason now so it's better to just put it down again and say, talk about something else or sit there for a bit longer.
And 'Oh would you like a drink?' 'Oh thank you.' And she might take a sip and say 'Oh I don't like that very much.' 'Oh well put it down and have it later you know.' And if you've got the time, but I appreciate the carers haven't got the time, they've got seventeen others to look after. I'm there for up to three hours and I've got the time to sit there and do something useful. But yes it is a problem.
Describes how she had to juggle her various responsibilities including caring for her mother.
Although we've both said that we'd, I mean, he'll come and visit mum. I mean, when I was ill, I had some sort of virus, flu virus or something and he said 'I'll pop in and see mum.' I thought 'Well he'll stay half an hour', and he stayed two and a half hours and helped her with tea, because he loves her, because they've been very close. And his mother had Alzheimer's.
So yes it is very difficult knowing how to balance it. And right now I just wish I could be signed off work for a month, I don't know what's going to happen next week, especially because work has put an added responsibility on me now. We've got an unqualified teaching, teacher starting and, they want me to, mentor her and there will be quite a lot of extra worked involved next term one way or another.
And I can just see it coming and I don't know what will happen, something will have to give. So yes it's difficult. I can manage my mother and my daughter and my granddaughter I think, if I could just get rid of work, yes it is difficult. Yes, there have been times when I've been breaking up as it were.
Thinks the advice and support from good friends and the Alzheimer's Society have been invaluable.
And to know there's a body that, and once or twice I have phoned up and people have been so understanding and so, 'Well I don't know but I could find out so and so for you.' So I think that has also been invaluable. And I'd say to anybody join as soon as you get, you know any carer, join because you are not alone.
They're at the end of the phone all the time, somebody who really understands and that's what you need. And I mean I was lucky I had friends that I always said supposing somebody had been worse off than me that didn't have a very good professional back-up, didn't have good friends, perhaps a, a spouse or somebody because their friend could have died you know. And I'd certainly, I'd certainly encourage anyone to get hold of the Alzheimer's Society, immediately for whatever comes later, just to make that contact because later on it's a bit more difficult to make contact.
Because you are not in a fit state but if you've already made that contact then it's there as a back up. It's luck of the draw isn't it? I'm lucky to have good friends and unlucky to have professional bodies who aren't so good.
Thinks home carers are poorly trained in dementia care but suggests being sensitive to a person's...
And, or some of them may have had a sort of half day lecture or something but they didn't actually have training to deal with Alzheimer's. So they didn't actually know, it hadn't actually occurred to them that when they knocked on the door that mum would be seeing them for the, as a stranger for the first time, even if they had been the day before and the day before and the day before. To them it was a fresh person.
And I think a lot depends on the sensitivity and intelligence, the natural intelligence of, whoever is looking after somebody like that and, some people have got the sensitivity and have got the intelligence or whatever, the imagination. And some people haven't, and some people with terrific education and qualifications haven't necessarily got the sensitivity and the, I don't know the insight and the understanding.
So yes I think a lot of it was because she had dementia, a lot of things couldn't have been slipped by like that. And thank goodness we were able to see what happened, I mean nobody would have known that her Meals on Wheels didn't come until quarter to three unless a friend of mine had been there that day and could prove that that's what happened. I mean otherwise we wouldn't have known.
The attitude of the people who knew that they could get away with it? I think it's terrible. But I can't change people's personalities. I think it's dreadful. With, I think in theory help in the home is excellent because most old people want to stay in the own homes, it's their last bit of security. But in practice it just doesn't always work. You've got to have a sufficient number of carers and you've got to have a sufficient number of appropriately qualified carers and caring carers. And sadly that doesn't always happen.
Says that home carers are a great idea in theory but explains why they often don't work well for people with dementia.
And you have to remember, which a lot of carers don't, I think, as I say the theory of carers I think is splendid, the practice if you're lucky its fine but normally it falls down because there's a shortage of carers, certainly in the area where we are, I can only speak about our area, but there's a shortage of carers, and the carers, some are naturally good and some just haven't a clue, and some don't always turn up, we found some that didn't come. We wouldn't have known they didn't come had we not lived opposite my mother. Or they came for half an hour and they went, instead of the half an hour, they'd go after ten minutes.
The good ones were excellent but with the best will in the world they weren't all Alzheimer's trained. That's a shame, I think carers who are going to look after Alzheimer's people should be trained, even then I know with the vast amount of training, some haven't got the natural ability, ideally if you've got both, but at least they should be trained. Things like every time a carer came to the door, in the end we got care morning and evening, so the morning was to get her up, but they'd come any time from half past seven to eleven o'clock. Well, my mother would be wandering the road by eleven o'clock, she'd always dressed herself, not necessarily in the correct things. And you see again in the evening, if they came at half six, well she didn't want to go to bed at half six, especially in the summer.
Describes leaving her mother in a specialised residential unit.
I thought, its no good telling my mother because she'll be distressed so I phoned my sister and she said 'I would come up but…' she doesn't work '…I'm very busy.' And I phoned her back and I said 'I think I need you to come up, I don't think I can do this alone because one of us will need to pack things and one of us will need to chat with my mother and keep her happy. I'm not going to tell her that she's going to stay away.' I just tried to think it all through from my mother's point of view and I knew she trusted me to look after her so I had to do what was in her best interests and I had to do it in a way that she would understand.
So I thought we'd say 'We're going to see the doctor together.' And then I thought we'd say 'Oh, he says it would be a good idea to stay for a little while.' And then I was prepared to stay with her if necessary but I would be guided by the professionals, you know I didn't want to push in and be bossy. You know, I said, 'I will do anything to support her. I'll be here all the time or I'll go away, whatever you think.'
And I stayed with her and so did my sister. As we left her flat I didn't think it would be for the last time, I thought she'd be coming back and the little dog was there, but for some reason the social worker came round. She and I got on very well, she's very similar to me, she'd got a mother-in-law that she was going through the same sort of thing, but not quite so late, and she and I had got very fond. And as I left the flat she came and she gave me a tremendous hug, a big hug and then she turned to go and I think she was trying not to cry herself. Though I certainly was……
So we said goodbye to the little dog, my mother said 'Be back soon' as she always is, and we got in the car, my sister drove and mum sat in the front and I sat in the back and we'd got all her things in the boot and I'd also packed a few photographs and things like that. Because I thought even if she's there for a little while, she wants familiar things, family photographs and us, and the dog. And I also packed some photograph albums. I'd made her up an album of her life, about a year before and what I'd done is, where - I know I'm dotting about - but I'd got lots of photograph albums and books which I knew she was interested in, which I'd got ready in the house for when these friends went by, and when the carers went in, for something, a point of contact that mum could talk about. And mum could say 'Oh yes, that's when I went to Africa.' She can't talk about them now but she's still got them.
So I packed all these things to take with her, quickly, and it was only the other side of town this place, it was only what, three miles from the door, so I knew I could… Anyway we went and they said 'She's fine and she's quite happy.' She didn't want us to go, I said 'Will you ring me and I'll come back.' Now I don't know how to deal, I don't know the professional way to deal with this sort of thing, I know my gut reaction is to stay with her. (momentary noise) But I suppose it's like a mother leaving a child at play group. You get these clingy mothers and if the play group leader says 'Well go, we'll call you if we need you.' So I said 'Look, you've got my number, ring me and I will come back..'
Realised her mother was confused about how to go about going to the lavatory.
She knew she wanted to go to the loo but she doesn't know how to do it now.' And the lady who I was talking to is one of the senior carers and she said 'Oh yes, I think that's so.' I said 'I wonder if a way round it…' because I said '…I've noticed she always tells me when she wants to go to the loo, when I'm with her and maybe she doesn't feel she knows you well enough to say she wants to go to the loo and she doesn't feel she knows you well enough to admit that she doesn't know where it is.' But she knows me well enough now, there was a time when she wouldn't admit that to me, but I have noticed since she's been here over the weeks, and it's probably the Alzheimer's, that she hasn't known what to do. She used to know what to do when she went to the loo, she said 'What do I sit on?' and 'What do I do with that?' and she stuck her walking stick down the loo.
So I have noticed that I sometimes have to take her things down for her and then I always close the door when she's performing because I feel it's her dignity. So I've noticed that she hasn't always known what to do and I thought they knew as well but obviously not all of them do. So I did suggest to this carer, 'Do you think it would be a good idea if somebody could ask her if she wants to go to the loo every two hours?' She said 'Oh that's a good idea.' I just thought well! So that worried me a bit but then when I went over to see her that night I saw the manager and she said 'Oh I'm sorry about that, obviously your poor mum didn't know how to do what she wanted to do.' I said 'Well that's what I felt.' So they put a notice up, and they take it in turns.
Regrets that she couldn't devote herself more completely to caring for her mother.
I think if I had agreed to send her to a home any earlier than I did I would have felt I'd really betrayed her. But I knew when she said she wanted to go home, she went through a stage where home was where she was with her mother and father and brothers. And then she went beyond that stage, this is still while she was in her flat, where home was she didn't know where, so then she said she wanted to be in my home, where I was. And really that's what I should have done, really, really, really.
Even now that's what we should have done, we should have had a bigger house 'with a place for her in it and nursing staff and I should have given up my job. I mean she actually said at one stage 'I know you'd have to give up your job, but I'll pay you.' And for the sake of a few years, two, three years out of my lifetime, that would be nothing would it, nothing. I know I have to think rationally, I have to think well there are some lovely carers where she is and where she is, is as near home as any other home could be if it wasn't my home.
Believes that her mother's 'spirit' remains intact.
I think you've got to be very, very careful saying that as well. And even me saying 'a ghost of her former self because the spirit if you like, being a Christian it's the spirit, but the core if you like right down inside you, the main crux of your being, your spirit right down inside you is still there. So she can still feel as deeply as she ever felt but she might not be able to show that feeling, it might not be obvious, she can't express it in words, she can't say how, even going to the loo she forgets the words and she'll go 'Oh, oh.' I know immediately what she's saying is 'My tummy hurts I need to go to the loo.'
So those thoughts and feelings are still there and an awful lot more might be still there that we don't know about, perhaps in years to come we'll discover what a wealth there is still there but it's unable to come out because they lose the ability to express it. So I think yes you have to be very. Careful because that vital person, vital person is still there and still needs, still has the, still needs love.
So I think sometimes when we might say that we're actually looking at it from our point of view aren't we. I could say 'Oh my mother's only the ghost of what she was because she's, she can't do this, she can't do that,' you know, poor me. And that's looking at it from outside and I think it's much more valuable to look at it from inside, to look at it from inside that person. She's still a vital human being with still the same needs, the same entitlements as she was, that hasn't altered at all and we should, we should give her the same care, more.
I can remember reading a book ages ago about somebody, some woman, it was in praise of Cheshire Homes and she had some illness which made her curl up and she couldn't talk, so she couldn't signal and she'd written this book because she'd actually been cured, because she'd curled up, she couldn't do anything, she could hear people but she couldn't react. And then she was put in a Cheshire Home and the matron of the Cheshire Home had a two-year-old son who ran past and the matron saw her eyes flicker, the patient's eyes flicker. And she said 'Gosh she can still hear, she can still react we mustn't give up.' So people would talk, talk, talk, talk to her and eventually she, she was cured. And she said there was this panic inside that people would give up on her because they thought she wasn't worth it, she didn't understand.
Now we don't know that same panic might be inside the Alzheimer's sufferers, we don't know because they can't tell us, but I believe it's still there, they still need us so I don't think. The vital thing that makes us what we are is still there right to the end with an Alzheimer's sufferer and the other things are dropping off by the way side and somehow we've got to compensate for them. So the vital human being is there needing love even more.
Found ways of getting her mother to eat.
No I don't think you should force drink, I don't think you should force anything down. One day you know my mother, I think it's a question of finding out what the person understands, because my mother could understand a drink in a cup, at one time it was a baby cup because she couldn't, she was lying down so we couldn't get it, but she understood that's what it was and she wanted it. And now she can understand, she went through a stage where she could understand what a cup of tea was.
So I then said to the home 'Could you put her soup in the mug because she can understand the mug, she can't understand the bowl and the spoon?' So they did and then they forgot the next time so I used to try and get there for a meal a day, the district nurse wasn't there so I used to try and get there for supper. So I put it into the cup and then I thought maybe she can understand what bread was. And the nurse, the district nurse, being the professional that she is said that if your mother goes to a table with others and sees other people eating she'll, she may try and copy which in fact in time to come she did.
And at one time I was feeding her, I said 'Oh, you're doing rather well,' with scrambled egg and she was smiling away, this is lovely, and all of a sudden she started taking it all out because she had forgotten that it was food so she was taking it all out. And I thought gosh if somebody started putting a load of stuff in my mouth and it wasn't food I'd want to take it out, so I let her take it out.
And, so I think, oh I don't know, I'm not a professional I don't know but I would say that if they stop eating try and offer them things that they understand. My mother loved ice cream and she used to like the feel of the cold in her mouth and of course the ice cream would melt and she'd swallow it.
So if that's good for her, why not let her eat ice cream at every meal. And in at one stage that's what she was doing. And, so I think it's much better to, by trial and error find out the things that the sufferer is happy to take. So I'd say that, I'd say the food and the drink and the things they can take in by their mouth that they're happy to take, I don't think you should use force, no I don't, at all.
Be sensitive to real needs rather than what people are going to think.
What do you think makes a good informal carer?
Well I think that person's, for the benefit of the person being cared for, that person needs to be very sensitive to the needs of the person they're caring for. And very sensitive to the needs because sometimes you can look at, he needs so and so and so and so and so and so. And that might be what you think they need but it's not always what they really need. And I mean quite frankly I want my mother to be clean but I would rather she was happy than super-duper clean. So OK she needs to be clean, she needs to be healthy and clean, I don't want her to be dirty and smelly, of course I don't. But maybe now and again you can let certain things go for her happiness. You have to be normal about these things.
So I think-yes the carer needs to be sensitive to the true needs of the person they're caring for, from the sufferer's point of view. And then they need to have the back up to be able to meet these needs, and the strength to be able to do it.
Suggests that other carers should get in touch with their local support groups.
I mean I was very lucky, again I had my own private band of friends who went in, so yes, the most helpful people were friends who rallied round and helped enormously. And again, the Alzheimer's Association (Society); I'm not sure that my own particular local group was very good in practical help, although I did join and I did go along and they were very supportive they don't seem to have got it together in practical help. I think other areas have gone on a lot better in providing practical help, but they were there and at the end of a phone and that sort of thing was enormously helpful.
Get in touch with others too; other people who are experiencing the same things, even if you can't go and visit them, there are support groups. I know our local Alzheimer's - I said they didn't, of course they do - do a lot, but their support groups are in the day, I couldn't go because I work full time. But yes, get out to a support group because meeting other people who are going through the same thing is a terrific bonding thing and you can help each other even if you just phone each other sometimes.
Tried to explain to the home carers that even if they had been the day before her mother might...
If they could sometimes spend five minutes on the doorstep, she's very vulnerable - that used to worry me because anybody could actually go in - but if they were prepared to spend five minutes on the doorstep chatting to her and letting her lead the way, she would eventually let them in, but others haven't got the patience. I mean we didn't spy because we were busy at work but I mean we watched a carer one evening, she knocked at the door, a couple of minutes later off she went in her car, so we knew she hadn't been in to make sure that my mother had had her supper or anything.