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Dementia

Eddie Mair | 17:50 UK time, Wednesday, 7 November 2007

...your thoughts and experience....just click on the comment link.

Comments

  1. At 05:53 PM on 07 Nov 2007, Helen Taylor wrote:

    Jim, my husband, a retired cameraman for BBC TV News & Current Affairs, , had dementia, following a general anaesthaetic (his first at the age of 81) and I can so recognise what George Mellee's widow was saying, although Jim never got to the stage of not knowing me or his children, and for that I thank God.

    Thank you so much for reassuring me that I was not unique in the feeling that I was being unkind or unfeeling in some of the things I said, not knowing exactly what my darling husband's condition meant.

  2. At 05:53 PM on 07 Nov 2007, Mike Barnes wrote:

    Tonight's discussion on shirt pockets failed to mention spectacles. When your style wallah gets to need reading glasses, he'll also need somewhere to keep them.

  3. At 05:59 PM on 07 Nov 2007, Susie Henley wrote:

    As someone who works with people with dementia this program sounds fantastic and it's lovely that George's wife is so willing to talk about this. However, dementia is just an umbrella term and there are a number of different types (such as Alzheimer's disease or Pick's disease). Although not everyone fits perfectly into these subgroups, many do, and their symptoms are different depending on the type of dementia they have. There seems to be some confusion in the general public about the meaning of all these terms and I feel it would be extremely useful if programs like this took some time to explain these issues at the outset.

  4. At 06:05 PM on 07 Nov 2007, Ed Iglehart wrote:

    Uhhhh....What was it you were asking?

    Slainte
    ed

    A man said to the Universe:
    "Sir, I exist!"
    "However," replied the Universe,
    "the fact has not created in me a sense of obligation."
    -- Stephen Crane

  5. At 06:11 PM on 07 Nov 2007, Fifi wrote:

    I had one grandparent with Alzheimer's, and another more recently with Dementia.

    Alzheimer's appeared to be more distressing to us, the carers, than to my Grandad, as long as he was safe, warm, clean, fed -- and able to walk about as much as he wanted.

    A residential unit in the next town, whilst looking (and I have to say, smelling) institutional, was the perfect environment for him.

    Before that, though, my parents had years of changing his bed twice or three times a night, switching off the gas so he couldn't get the cooker to work, and arranging a 'Grandpa-sitter' any time we all had to go out of the house.

    By contrast, Gran knew she was losing her mind, and was terrified and angry about it. She lived for 2 years in sheltered accommodation, heavily supported by both a team of carers and my parents living next door.

    The last thing my Gran ever said to me was: 'Don't get old Fiona. Don't ever get old. It's horrible.'

    Even so, I loved them both right to the end, and found a strange sort of pleasure in helping with their care when I could. They both remembered by name (long after every other name was forgotten) and recognised me, right to the end.

    They each retained a little something of their original personality. Perhaps a tiny something. But recognisably it was there. And we all clung to that as the situations got sadder, and sadder.

    Fifi

  6. At 06:26 PM on 07 Nov 2007, Bryony Caron wrote:

    Re Diana Melly - My husband, 72 and a dementia sufferer, had appendicitis last year and was hospitalised for a month (including time recovering from MRSA). The staff, whom I was told were trained in handling dementia patients, were sadly lacking in the skills and understanding required. His buzzer was attached to the side of his bed where he could not see it - out of sight out of mind. On several occasions I found him lying in excretia and/or urine, uncomfortable and distressed, yet not able to get staff's attention. He was expected to choose his meals, without really understanding the choices, and ate very little when back on solids. I suggested jam sandwiches, a particular favourite, and this was implemented, but soon afterwards he was put on a special diet because he was not sufficiently strong. His food plates, covered in a lid, were never lifted up on collection and checked to see if he had eaten any of the meal. I asked if I could bring some food in and this was allowed. However, I was accused by a nurse of eating my husband's food and he was put under staff supervision at mealtimes, when I was present! Other major problems included leaving tablets for him without checking that he had taken them, and my later finding them on the floor. 3 days after I noticed, and pointed out, an eye infection, his eyes were treated with drops, the container of which was put into both eyes without being cleansed to prevent spreading of the infection from one eye to another. These and other concerns prompted me to write a report to PALS - the Patient Advice and Liaison Service. I received a reply which centred on the "food-eating" incident, ignoring many other points I'd raised. I wrote again to clarify events, and that was the end of the situation. I fully concur with Diana Melly's comments about food - one learns as one goes being a carer of a dementia - there is no training beforehand! Bryony Caron.

  7. At 06:38 PM on 07 Nov 2007, caryn heymans wrote:

    My father , who died last July, suffered from dementia for the last two and a half years of his life due to several brain haemorrhages. From January on he got worse, although he didn't seem to mind very much himself. I helped to care for him and that was hard but wonderful. I loved my father very dearly all my life but as we weren't very talkative we never told each other so. But the last half year we got very, very close. As I spent so much time with him , he recognized me until his last moments. And I felt able to tell him for the first time in our lives that I loved him very much and ask him if he loved me. I touched him much more than I ever did before, cleaned him up when necessary, took him for walks in his wheelchair, took him to the pub, explained what was going on when we were watching tele, tried to make him laugh, explained what was going on when I saw he didn't understand things, watched his face light up when he talked to my mother on the phone, ... It took up a lot of my time but I don't regret a single moment of it. It gave me time to say goodbye properly and tenderly, which I think wouldn't have been possible without him being as dement as he was.

  8. At 12:34 AM on 08 Nov 2007, Guima wrote:

    My father has Alzheimer. One month ago we had to make a tough decision: move him to a care house. Before that it was too difficult for us to take care of him in his own home, with people hired to care. Now he's weel treated. Yesterday he had his theeth removed under ganeral anesthesia. Another difficult moment for all. Today he's better and painless.

  9. At 08:50 AM on 08 Nov 2007, Big Sister wrote:

    Having watched the programme last night and marvelled at the power of George Melly's personality in the face of his complex physical and mental health problems, and witnessing how Diana Melly coped or, occasionally, didn't cope, I felt compelled to comment here today.

    My own dear father died about six years ago now, having undergone a mental decline, losely diagnosed as dementia, following two strokes. He survived the original stroke by about three years, but the latter two of these were spent in a nursing home. The first year he was with my mother, and she found it increasingly difficult to cope with his periods of illucidity (I hope that's the right word!) when he escaped into worlds that were, doubtlessly, decorated with experiences from his past life but which bore no resemblance to the present in which he was inhabiting. He also, very distressingly for my mother, refused to recognise her at times, seeming to believe there were two version of her, one good, one bad. It was that which, I think, along with a second, less serious, stroke, led my mother to decide that she could no longer cope with him at home. In other words, her own mental health was suffering as a result of my father's progressive dementia.

    Once in the nursing home, life was much easier for her. We were fortunate in that the home was less than ten minutes drive from my mother's house and she was a driver. She went to see him nearly every day. He still had problems over her identity, it still upset him, and then she'd come home and feel upset alone. But she was relieved of the burden of the physical care of my father, which had been increasingly difficult for her.

    My father, on the other hand, was never truly happy in the nursing home. The carers were kindly, although there were some issues around how they addressed him, but a quiet word from me to the sister resolved that problem. He, however, wanted every day to come home, even as his lucidity declined still further he never lost that wish. It was heartbreaking for my mother, but even more so for me, because - had my housing allowed it, and had I lived nearer to my mother - I would have taken him to my home to provide him with an environment in which he could be happier.

    He remained to the end a gentle soul who very rarely took out his frustrations on the carers. He absolutely hated having his personal care being undertaken by young women - and this, I feel, is a real issue for some men, particularly of his generation.

    I feel very very sad that my father died in a nursing home. As so often happens, although I had devoted my time to being with him in the last few weeks of his life, I happened to be away from his bedside at the time he died. I did, however, have the good fortune to have always been recognised by him and to have had some lovely conversations with him during this time, allowing his flights of fancy to take wing during the less lucid times, and sharing memories from childhood and youth with him when he was a little better.

    The issue of how we deal with our loved ones if they are lucky enough to live into old age and they are unlucky enough to develop senile dementia is something to which everybody should give thought. From my own experience I would say: Do not be afraid, but be prepared. They are still the same person at heart, they are not responsible for the mood changes and confusion that they experience. Be patient, be loving - they are often very afraid and it will be the power of your love which will help them towards achieving as happy an end to their life that is possible in the circumstances.

    I was very struck by that thought as I watched Diana and George Melly last night.

    Fifi: Of course you loved them to the end. Why wouldn't you?

  10. At 09:37 AM on 08 Nov 2007, Fifi wrote:

    Big Sister (9): I need to explain that remark, perhaps.

    For me, there can be no 'of course' about love. Maybe I'm a hard-hearted thing, but in my experience love has to be earned and maintained like any other emotion. That goes for life-partner, children, parents, oneself, everyone.

    My Gran, in particular, underwent personality adjustments as her condition worsened. A bit like the way some people reveal undiscovered violent or sentimental sides to their nature, when drunk. In her case, her manipulativeness caused some quite unnecessary friction among her grown-up children, which is sad. Fortunately this was resolved before she died, but only at the expense of some family members facing uncomfortable facts about how their mother was behaving.

    Having said all that, none of this was directed at me personally. I, too, was fortunate to be among the last to be recognised by both my ailing grandparents, and in Gran's case she would also ask after my SO by name. Had I been involved in the misunderstandings and ensuing rows, myself, I might have found it hard to rise above it and see that 'this isn't really her'.

    I'm not sure I've made my point any more clearly! But I'll just repeat that, for me, there is no 'of course' about loving someone. For example, my SO and I are still together after all these years, not because we 'ought' to, but because we 'want' to, and continue to work at making ourselves and each other 'want' to, every day.

    Maybe a lot of people are putting themselves through unnecessary additional stress because the hurtful things their loved ones say or do, under the influence of dementia, really hurt them and they know they can't respond in any effective way, but they still hurt. Such feelings are reasonable and should be acknowledged.

    Fifi

  11. At 10:46 AM on 08 Nov 2007, Big Sister wrote:

    Yes, Fifi, I understand your points but ....

    Dementia does very strange things to people, and in a way we have to try to see around them. I rather liked Diana Melly's comment, in the film last night, when George asked her to do a series of rather odd things, that she was being ordered around by 'dementia'. She saw, in that statement, the need to separate the odd behaviour in dementia sufferers from the sufferer themselves. It is the condition which induces this. Unlike alcohol, dementia isn't a disinhibitor - it is a distorter. I'll give you an instance in the case of my father. In all the years I knew him, he would never swear and had very strong views about swearing, yet as his condition declined, he did occasional come out with words which he'd heard but hated when others used them. The effect of his stroke had been effectively to reprogramme his brain, and it is the case in dementia that the neurological and cognitive changes often do bring about a change of personality.

    I do believe there should be more support for the families of dementia sufferers by way of explaining the effects of the condition upon the patient and also by way of providing a listening ear for those who are distressed by those changes. Because I did know quite a bit about the condition I did try to explain this to my mother, but we could not find a support group to help her.

    I agree that love cannot be unconditional, but I would hope that we can all find it in us to make allowances for our loved ones when they are struck by something completely out of their control.

  12. At 11:52 AM on 08 Nov 2007, Helen Richards wrote:

    Hooray,at last Admiral nurses are getting to be mentioned!
    My husband Gwyn Richards (who was a Radio 4 producer for many years) died of dementia earlier this year.Sadly he was sectioned and was totally unaware of everything that was going on.I could not have managed without my admiral Nurse Helen.She was shining star in my environment and kept me sane through anger and of course eventual bereavement.

  13. At 01:45 PM on 08 Nov 2007, Perky wrote:

    There's no question that most forms of dementia are very difficult for both sufferer and carer. My Gran had Alzheimer's disease and, although I had left home by then, my Mum and brother, who was only a teenager at the time, bore the brunt of her care until she was finally admitted into a residential home, just a few weeks before she died.

    Of course, it was frustrating, sad and often lonely for her and extremely difficult for my Mum, who was teaching full-time as well as caring for my Gran - but our memories of that time now are of many moments of fun, love and discovery; particularly as she lost her short-term memory, but not her long-term one. The way she spoke fondly of my mother as a child, and my Grandfather before they were married were memories and feelings that were immediate and real to her and a revelation to us.

    Good care is clearly the key to managing dementia in all its forms to the benefit of the patient and their families, and I sympathise with those who have had real problems in this area.

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