Laurie Graham Article in The DM

Hi lovebeigecardingans1955 - - no I don't think you're being awful to air those thoughts - two things you say are very pertinent - the first is that often the person with dementia has nothing else physically wrong with them and provided they continue to eat and drink, can go on for years. The second is that a middle-aged or even older person caring for a parent with dementia is likely to suffer in their own health as a result. I am 67 and nurse my mum who is almost 91, in the home that we share. She has vascular dementia and has lost about 4 stone in weight over the last three years through not eating properly and being disabled, not able to preserve muscle. As an only child I wouldn't consider putting her into a care home and I am fortunate in that I do have help from carers, but my own health has suffered tremendously - insufficient sleep, weight gain, stress, pain and anguish, back pain through lifting etc., etc., People who have no experience of caring for someone with dementia, especially when it's advanced, have no idea of the challenges of every single hour and it would take a saint not to feel the way you do. If you don't take better care of yourself then you will come to resent your MIL even more for her intrusion into your life - you may never live to be as old as her, so you have to create a balance, and if your visits to her are so stressful maybe you should consider making them less frequent. Good luck.

Oh so hard going now to see my mam she doesn't know me at all and is in late stages incontinent and frail. We broke our promise for her own safety but still feel guilty three years in heartbreaking x

My mum has vascular dementia and Alzheimers and after my sisters and I had cared for her at home for a few years, her condition became worse to the point we could no longer keep her in her home, and in March this year she went into a care home. We all visit constantly but as soon as we have left she thinks no one has visited her for years. She thinks she is 38 (she's 86) and that her mother (who died may years ago) put her in the care home 60 years ago. So much of what has been said on here strikes a chord and we had to break our promise to our dad (he died in Jan 2016 from mesothelioma) to look after her. We know he would understand because it is the best place for mum now. It doesn't stop the guilt every time we leave the home, or the awful sense of loss as there is only a little of my mun left now and I know she feels scared, frustrated and angry yet even that is becoming less now. Such an awful disease.

Thank you for sharing this kittylester. So poignant and precise in blow by blow detail. I'm sure this will be of huge comfort to those who have trodden/are treading a similar path. Very movingly beautiful........

After 37 years with us, Mum went in a Care Home two years ago. Every member of staff deserves a medal for their cheerful manner and the way they treat everyone with dignity. We can't cure the disease ( at the moment) but it seems SO important to try to relieve the monotony by encouraging visitors, entertainers etc especially as friends and neighbours are pushed away by rude or aggressive behaviour. Let's have a campaign to find funding for every home to have an Activities plan and at least a part time coordinator and also we need to improve public understanding of those coming across someone with dementia ( e.g. agree, don't try to reason or point out someone is wrong ).
A few of us have set up a social committee but a feature of dementia seems to be jealousy of time we spend interacting with other residents. Anyway, this month Elvis will be visiting, along with dogs, nursery children, poetry chap and the usual singers etc.
I found a Distance Learning Course from the University of Tasmania is helping me understand the strange behaviour of Mum and other residents , which makes it easier to cope

Violette I felt so sad reading your story, I do wish I could offer you advise, but not knowing anything about the French healthcare/care systems, I'm afraid I can't.

I remember when my DM had dementia and had to go into a care home, the manager told me that every change of environment causes a downward step in the condition of the person, which is irreversible. It is such an appalling illness, like others I dread it happening to me. Also I have only one child, and hate to think of her having to decide what to do - I have 2 brothers and although we disagreed a lot, it was very good not to feel alone.

This in deed a terrible illness - MIL has Alzheimers and vascular dementia. We have had to put her in a care home or she would have driven BIL/SIL insane (and maybe still will).
After yesterday's visit I felt quite upset. She hates it there, continually says that she wants to die and that none of us is brave enough to kill her. We even get criticised for accepting a cup of tea there - why don't we drink tea at home?
She frequently refuses to eat but the nurses cajoled her into eating her dinner yesterday. The GP visited and says that apart from the dementia and failing eyesight there's basically nothing wrong with her.
Both myself and BIL had lymphoma a couple of years ago - he has a CT scan soon due to another lump in his neck - his mother on top of all that worry is something he doesn't need. Am I being awful to say that I feel like strangling her to put us all out or misery?

... Many hugs to you too

My heart goes out to anyone who has a loved one with this dreadful disease. My dad had to go into a home as mum was making herself ill caring for him at home. Whem I went to visit he used to beg me to help him to die. Mum used to get on the bus every day and go and see him. He died 17 years ago and mum had a bit more freedom, moved into a small flat. I lived near and saw a lot of her.
Within about 4 years mum was diagnosed with Lewy Body Dementia and after many hospital admissions was moved into a home. It broke my heart to see her there, at every visit she begged me to take her home but I'm not sure which home she meant.
This is the most cruel of diseases and the guilt felt after putting loved ones in a home never leaves you.

We did exactly the same with my mother - took her 'out for lunch' knowing that she was never coming home. We could not have discussed it with her, since according to her there was nothing wrong with her, and she'd simply have refused to go. But by then her Alzheimer's was bad enough that she had no idea it was a care home we'd come to - even when we were sitting in the dining room having their very nice lunch, she thought it was a restaurant and offered to pay. Despite having had no part in her own finances for quite a while, since she could no,longer manage money at all. We all felt dreadful.

I think just about everybody who finally goes down the care home route does so with a heavy heart and awful feelings of guilt, even when they know there's no practical alternative any more, since the person now needs someone on hand ALL day, ALL night, 365 days a year, never mind difficulties with aggression, refusal to wash, incontinence,, etc.
Dreadful disease. My mother had it from her early 80s until she died at 97, and for the last few years she was just a most pitiful shell - unable to make any conversation, take part in or enjoy any activity, or recognise any of her own family.

Dementia is a dreadful illness. I cared for my late husband for 11 years and my mother for her last two years. Every one who has Dementia may have it in a slightly way, no one is the same.
I now work with Dementia patients voluntarily and love it.

I live in Devon and we have a Dementia Action Alliance in our town as most towns now do, we also have a love Memory Café for couples and family to socialise and get signposted and I ran the local Carers Support Group.

We are just in the middle of launching our Campaign for our own Admiral Nurse, Seaton already have one as does Hospiscare in East Devon. They are badly needed in most are to work along side the community nurses who are so pressed and over worked. Admiral nurses are grade 6 -7 nurses, so are highly qualified and expensive but are worth the weight in gold. The community are fundraising for the costs of having one and are being absolutely brilliant in coming forward with fundraising ideas.

Most people these days are affected one way or another by dementia, at the moment there is no cure, but we live in hope. We are all aware that it could be us one day needing this support.

My heart goes out to any one affected by this awful illness, and I can only advise carers to make sure they get all the support they possibly can as early after diagnoses as possible. You will need it.

Very moving. And thought provoking.

My lovely caring well dressed DM developed Alzheimers in her mid seventies. We helped DD look after her as long as we could then had to let her go to a home! DD visited every day & though she gradually forgot us all never forgot him. When he walked in she always greeted him with 'there is my Henry'. Eventually DM forgot how to eat & drink then how to breathe & passed away.
A few months later DD gave up & did what he had said he wanted to do from the day DM died, joined her!
So we really lost both to dementia the worst disease i can think off & dread it happening to me.

I must read that article ...get the Engish papers here a day late (don't read it online as I will buy it anyway !) ....it is a horribe disease ..fortunately neither of my parents suffered from it, but my husband has now been diagnosed with vasculaire dementia and Parkinson's disease and is going downhill fast The problem is he refuses point blank to accept it, and gets very very angry all the time. He can only walk very slowly, hates using a stick and refuses to use the Rollator the doctor gave him. Here in rural France, care homes will not be an option as the cost is astronimical and there is no way we could afford it, and if we sold the house he would refuse to go anyway as he cannot speak French .....home care is also a problem. At the moment the health service is excellent, and there are organisations we could join ...but again, he refuses ! Life is very lonely and isolated ...all the friends we had either do not visit any more because he is rude to them and last one to come he told them he was going to get on with the gardening as he had no time to sit and talk ,,,,,needless to say. they never came again ! Most have either moved died or returned to the UK ...this is not an option for us as the doctor says it would kill him, even if we could afford it ! I understand in some regions of the UK anyway there is not a lot of help available. Mind you, if we are refused the continuation of our reciprocal health care agreement after Brexit cut off date, then we are as good as dead anyway !!!!...he likes to go to the local bar for a drink, and keeps asking can we go (he is no longer allowed to drive) but I have sat here ready and dressed since 08,00am waiting for the nurse to come and change the dressings on yet another huge gash in his leg where he fell over in the garden ,,,,so it doesn't look like we will be going anywhere ! I just hope she comes soon .....I cannot go out and leave him as the nurse lovely as she is, only speaks French ! oh well, c'est la vie ! Feel mutual sympathy to anyone going through this !!!! [hugs]

Sorry that should read my and not maybe.

Maybe mother had dementia. She had always been a worrier but when the illness really took hold she could no longer remember what to worry about. So that was a positive. One of the worst things is seeing that dementia sufferer losing their personality. They r no longer the person u love.

I know all about dementia. I call it the Devils disease, my father went from the most intelligent man you could meet to someone who did not know us, could not speak or write.

He had Alzheimers and his son got it too.

I know all about dementia. I call it the Devils disease, my father went from the most intelligent man you could meet to someone who did not know us, could not speak or write.

He had Alzheimers and his son got it too.

Thanks Kitty.

My mil suffered dementia . I say suffered which she did for the first year so because she thought everyone was out to get her ,the neighbours were trying to steal her drain pipes and this would leave her without water. The house was flooding . I was stealing all her jewellery . The cleaning lady was stealing her gel she rubbed on her legs and all sorts of things happening that upset her or caused her to cause upset with us and others . Then she got worse and she was in her own happy little world where she went out dancing every night , went to London to see the Queen . Little children were coming into the care home to sing to them at night . She was so happy so we just went along with whatever she told us and asked if she had a good time. The staff said she was one of the happiest ladies they had known . It was sad to see some of the residents as they were always in tears ,looking for loved ones, pacing the rooms and trying to get out.
It's a horrible disease but in my opinion it is more so for the ones who have lost their loved one that is still there but not themselves. A horrible end to a life.

She's put it so beautifully. The sadness and guilt. I'm very fortunate not to be in her position but I'm sure that what she's said will resonate with so many readers. Best wishes to all of you coping with such a situation in your lives.

I think the person with dementia must often experience life as a sort of dream world, where they just accept things whether they make sense or not.
The saddest thing is when that doesn't happen, and the person keeps trying to make sense of what's happening and keeps wanting to get back to their real life.

Done all this twice with my parents; and face the possibility that the same might arise with my OH - some of the recent developments have concentrated my mind on what I can and cannot cope with - what my limitations are going to be. It is creepy stuff, as in no way could I have imagined such thoughts entering my mind even just a year ago, and I sometimes wonder what the next year might bring. Life can be a bitch.

Not because I posted it but because I think it's worth the read.

So sad. My late SIL was in the dementia ward of the care home. im so grateful that neither of my parents had dementia. It's probably harder for those watching, loving and caring for the person than the actual person suffering it.

Laurie Graham has always been an eloquent writer, so hard for her to describe this personal battle, and her grief and guilt are understandable.