1. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi All,

    Today I came across an short essay by Alan Bennet about his mother's last years of life (she was suffering from dementia and living in a care home). It is a very acutely-observed piece, both sensitive and unblinkingly honest.

    It will not be to everyone's taste, but some of you might find it a moving account. He has a knack of putting into words some of the vague feelings that arise when dealing with this most difficult disease.

    http://www.telegraph.co.uk/news/mai...24.xml&sSheet=/news/2005/09/24/ixnewstop.html

    Take care,

    Sandy
     
  2. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thank you for posting that -I had just caught something of it on Radio 4 this am but missed the details. Got me crying ...again!
     
  3. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Sandy,

    Thank you - what a very powerful account. You're right, he really has captured some of the darkest thoughts that dementia brings to the onlookers.

    Thanks again.
     
  4. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Wow - scarily, brutally accurate ........ so sad!!!
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Sandy, in between my tears, I thought how wonderfully well he captured it all. Thanks for posting it, so true, so sad, so desperately all of us. Oh how I hate this darn disease. Love She. XX
     
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Grim

    The essay whilst touching does indeed show me that every case is different.

    There has been no quiet, sad, nostalgic dwindling away in my family's experienceof Alzheimers, instead its been like watching my father dragged along behind a speeding vehicle a rope tied to his ankle, being injured and maimed, screaming and yelling and fighting the whole way. Watching him, unable to do anything, horrified by what is happening to him, like being in a dream where you are willing yourself to take action and find you can't move.

    Alzheimer's is not always about forgetting, it can also be about being trapped in a body, that won't do what you want it to. And it can be about not being able to tell anyone you are still there when your random and erratic behaviour suggests that you are not. I have seen too often the evidence that my father doesn't forget despite being in Stage 7.
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear JC, yes I know what you mean about the pain of watching your loved one struggle with dementia. My Mum was with it, all be it coming and going, right up to the day she died. I had Vera Lynne playing on a DVD for her and although she was very frail and her voice faint, I could hear her softly humming along to the tune. She too did not give in but bravely fought the illness as best she could. It hurts like hell doesn't it. If she had not tried to leave the hospital where she was being treated for a chest infection, she would not have fallen in the day room and broken her hip. It was that which finally took its toll. I tried to get her better, but I couldn't. She came home and died with love around her. But I did feel his article had a great deal of truth in it, especially about how the carer feels and the way you lose them bit by bit. Thinking of you, hope tomorrow the sun shines for you, love She. XX
     
  8. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Sandy
    thank you for the Alan Bennet essay.So sad.
    During my time in the NHS I have been in so many, many homes similar to the one described by Alan Bennet.
    I have talked to the residents,some told me "I am going home today"some said "my son is coming today" all wishful thinking in their demented minds.
    Some laughed some cried.Some just stared into space.
    I always felt so sad and helpless that I could not give them more comfort,or help more in some way.
    I always hoped that this could not happen to Peg or me,but it did.
    Many of the situations descibed in the essay are happening to me now and I dread the progress to the next stages.
    Norman :(
     
  9. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Thank-you, but then I need to rant again!

    Sheila thank-you for your kind thoughts, I guess I'm angrier than I am sad these days, I was sad for about 3 years but now I am just furious! It sounds as if your experience with your mother, helps you to understand how I feel, I'm sorry that you had to go through that.

    I probably come across as very harsh and brutal, and articles like this one although very caring and understanding, drive me crazy because I'm so tired of everyone dismissing this disease of Dad's as inevitable, sad but acceptable. Its SO not acceptable! The article doesn't actually say this, but the author has definetly been defeated by his experience.

    I want to scream at people, saying how can you just shrug your shoulders at this, how can you pat me on the hand and say never mind dear at least he doesn't know what is happening to him, how can people have just given up on this man who was a fighter, who fought for other people's rights, and would never have given up on them?? (and I am not directing these complaints at anyone on here)

    I want to put Dad's illness in their faces, I am not going to just let them forget him, I am going to be unpleasant. Because if I manage to just shock one person enough for them to add their voices to those calling for more research funding, then it has been worth it. My mother suggested some time ago that when Dad dies perhaps we will just have him cremated and conduct a small service in the town he now lives in, not the one he spent most of his life in. I put it to her however, that I'm sick of Dad being forgotten, that he should have a funeral in size befitting how important he was to the community, the people who knew him all his life should come to the service and pay their respects, not just read it in the paper, and he should have a grand coffin, to befit the grand man inside it. (this is no comment on people's personal funeral preferences, it just had always been traditional in my father's family to have 'coffin' funerals with pall bearers). I don't want my Dad to be turned to ashes so that the memory of him can just blow away in the wind. I am sick of this disease turning a once very solid, vibrant, real person into a hazy reminisce for most people. He is still here, he is still real, his soul has not yet left this Earth. He's not the one who's left us, everyone else has left him.

    Mum said to me, 'But what if nobody comes to his funeral?', and I said I don't care if noone comes, I will hire people to carry his coffin out of the church if I have to, I will make people remember who he was, they will see the funeral procession in black walking so proudly from the church, and they can live with him on their consciences, if they don't have the decency to show their respects! (I do suspect that if given the chance people of his community will eagerly attend, they have just been scared of Dad the last fewyears, because they don't understand what has happened to his brain) Why is everyone continually trying to hide him away? Dignity, they say, shaking their heads at me, silly young girl just doesn't understand...Shrew dignity I say! This has come down to a life and death struggle, (not just Dad's because every battle he wins in this disease is a win for everyone, i.e. assisting in developing new medications), fighting death is not a gentleman's battle, its down and dirty. What is the point of dignity, if you sacrifice other's wellbeings to maintain it? We should be proud of being undignified and support and be proud of those that have to suffer indignity, if it means that they can fight the long fight. We should celebrate these heroes in faulty bodies! It shouldn't be embarassing to be incontinent, people should be embarassed instead by their inability to deal with a fact of life, even if it is diseased life that they make a person suffering such lack of control feel undignified.

    Phew, what a rant! Please don't anyone tell me to let go of my anger, or tell me why it is unwise. Anger is working for me right now, anger is keeping my Dad looked after by me, anger is helping me fight for him.
     
  10. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Nat,

    "Please don't anyone tell me to let go of my anger"

    I wouldn't dare - I'd be too frightened! ;) Seriously though, there is your mantra - "This too in time will pass...".

    You can 'Rage, rage against the dying of the light' (Dylan Thomas) but also consider Oscar Wilde's last words 'Either the wallpaper goes or I do'. There's different ways of struggling with life and death. Perhaps Alan Bennett's way was reflecting his mother's resignation.

    Fighting / crying / laughing / resignation - it's all pain, but it's all love too.
     
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Ah but you did dare didn't u!?

    But honestly where does resignation leave you?

    Some might say comfortable, but it aint going to help the rest of the sufferers nor their families.

    It isn't going to help society to realise how truly important it is that we fight this disease. They might sympathise and pat you on the head and say 'Poor dear, it must have been so tough.' but they aint going to get off their backsides any do anything about it.

    My mantra is about coping with the emotional stress, it isn't about accepting it nor being resigned to it.

    Fight, fight, fight, rah, rah, rah! :p

    (I am aware that some family members are too exhausted to want to try and am not judging them, I understand, but dammit don't let society think the only answer to this disease is resignation and defeat. Tell them that it has defeated you if you like, yes, but tell them also that you don't want it to defeat others and that your defeat is not due to a personal lacking but the sheer monstrosity of the experience.)

    I'm doing this for Dad in that he was determined that his death would not be in vain but that it would help bring awareness, research, and an unwillingness to accept that this was just another way to die.

    Maybe we are fools. But we're fools with high ideals! ;)
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Seems to me that everyone who has become involved in this caring business has to have a driver, or drivers. You don't just wake up one day and think "I will be a carer for [whoever]" without being driven in some way.

    The driver may be anger, love, pity, responsibility, grit, despair, contraryness - or a range of other things.

    As with Nat, it may be anger born of love, probably mixed in with a good few other things. I'd guess that there are few cases where there is a single driver.

    Whatever it is, as long as you are using it - or them - to do what you think is the right thing to do, and they are not controlling you, then I reckon it works.

    Time and the development of the AD will determine when things need to be modified in any way.

    In my own case, I have cared for Jan for reasons of love, coupled with intense anger that such a thing could happen to her. There will have been other reasons. But I found myself being ground down to the stage where I felt I could no longer bear seeing her decline. I told myself I'd rather be out of life myself than that, and began to make plans. What kept me going initially was the knowledge that everything we had built together in over 30 years would pass to Jan on my exit, and when she eventually died, whatever was left would go to her family, which had done nothing at all for her since she had been diagnosed. My ballistic anger at that possibility kept me going until a much more consuming and optimistic reason came along, quite unexpectedly. Anger, I salute you!
     
  13. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Dear JC
    I share a lot of your anger. I have just walked to the village and back to get the paper and 3 people asked how Mum is.
    I often feel like saying "if you bothered to visit her you would know", but politeness prevails.
    Our loved ones are not visited by the people who would happily go and see them if they had a physical disorder. The excuse is always "I would go, but she won't remember me."
    Well she doesn't remember me either, but I still love seeing her and she seems to enjoy our mostly one-sided chats.
    Your comments about your Dad's funeral also struck a chord with me. My Dad one year ago had a fantastic funeral with a horse-drawn hearse followed by over 200 mourners walking with him to the village and around the green before a lovely church service. They were a well loved couple. It has been said by family members that when Mum's time comes she should have a small cremation service, but she deserves the same as Dad. Why should she now be treated any differently to him, I, like you, don't care if there are only a dozen people there, she will be treated with the same respect and love as Dad was, she deserves nothing less.
    Kathleen
    xx
     
  14. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I'm not sure that I actually said 'let go of your anger', it certainly wasn't intended. I was just trying to point out that different people have different coping strategies and, at the moment, you've chosen anger (who knows how we'll all change along the way?)

    Honestly? Resignation (it's such a drippy word, isn't it?) can bring a sort of peace of mind - a feeling that despair and anger won't ever bring. Yes, a kind of comfort - and there can still be strength in that.

    I've seen a relative of mine staying resolute that they will never accept that it's come to this; my Dad in a Home. That's how they feel and I can't change that, but too much anger can not only be self-destructive, it can also be detrimental to the person you're caring for. They hardly ever visit my Dad now, and I can imagine, if they did, how exhausting and guilt-provoking it might feel to have someone so confrontational visiting - I might start to imagine they're blaming me for my illness. So, on the contrary, I feel that resignation can help the sufferer.

    I'm all for fighting the disease and trying to find ways to bring awareness and research to the fore, and goodness knows we need people to get out there and do it, but personally, at the moment, I am resigned to the fact that this disease has gotten hold of my Dad and isn't likely to go away, bar some miracle. So, much as I hate it, I've chosen to accept that. That's it for now - but who knows how I'll feel in another few years, months, weeks?

    Might have to agree to differ on this one!
     
  15. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Disagreeing and thanks

    Hazel,

    Happy to agree to disagree, thats what is good about this forum, I've visited other forum's and certain viewpoints are blocked and derided, Alzheimer's talking point is a fantastically open forum. :) You and i agree quite often anyway Hazel on the important stuff, where we don't agree just comes down to personality type I suspect.

    On anger and dealing with Dad, he never sees my anger and perhaps thats why i need the anger, I am always so bright, bubbly, caring, happy, loving and understanding when I am with him. When I'm not, well I guess we need balance, don't we?

    Kathleen,
    Your message warmed my heart, your understanding was divine. The first time I really felt someone has really gotten what I mean about being angry about Dad's dwindling existence in the eyes of the rest of the world and told me so... Thank-YOU!
     
  16. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    I too used to get so annoyed with people who asked 'how things were' or 'how's Mum' and were told the truth. 'Well actually things are ******' and 'Mum is just waiting to die' and then didn't like it or just sort of walked away instead of joining in with my anger.

    What did they expect me to say, everything was hunky dory and that Mum just loved being in an EMI home because her daughter had nearly had a nervous breakdown trying to look after her.

    I remember having a rant at our lovely village priest along the lines of ..... I feel as if I had a great crushing weight on my shoulders and that I could not find anything, nothing at all to give me hope in our situation.......

    I too made sure Mum had a terrific funeral, hers too was a life to be celebrated, she was cremated according to her wishes but we had a church service before hand. Her coffin, as an ex-service woman was draped in the Union Flag ,a trumpeter played The Last Post and I chose rousing hymns.

    Geraldine
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    You guys, you are all brilliant! To my mind, this is what its all about, we are all talking, getting this disease out in the open, saying how we feel. This is what we build on, for our loved ones, those gone before, those suffering now, and, those of us who will suffer in the future. We CAN make a difference and its this strong input that can be used to strengthen our resolve to get more help for dementia sufferers. A person is no less a person because they have a disability, be that physical or mental, their life is precious, every moment, whether they personally remember it or not. We had a big turnout at Mum's funeral, so many people from her town, who had known and loved her came, sent flowers, or contacted us. She had a solid oak coffin as she had always requested, the hymns she wanted, the lesson. All I did was add her and Dad's special song and had Vera Lynne singing as we went to the graveside. This was my Mum, or rather the essence of her if you like. Afterwards we had on old fashioned wake, just how she had always done for others. It was no different just because dementia had moved in. Don't let it stop any of you doing what your loved ones would want in either life or death. That would be giving in to dementia! I could not do that, but I do accept that at the moment, we cannot overcome its grasp once it has arrived. With love, She. XX
     
  18. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Nat,

    You're welcome,glad I could be of some use.

    Kathleen
    xx
     
  19. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Sandy, Nat, Kathleen and all

    Sandy - thanks for posting the Alan Bennet link. I felt moved to tears by some of his comments. I feel a mixture of the resignation and the anger - at different times. Sometimes I want to 'get back' at all the lifelong 'friends' of dads who never even pick up the phone to ask after him. Sometimes I feel more charitable - remembering they are very elderly and that to their generation mental illness carried an even greater stigma than today. Then I think of how my mum, the same generation, was the only one to visit one of their friends who had AD, every week until she died. I know how the anger feels, Nat, but I have to block it out for much of the time because otherwise I just can't cope with the sheer torrent of emotions. For me anger makes things worse and resignation (or acceptance) gives me the space to deal with all the myriad of other emotions. I want my 'real' dad back. That won't happen and I continue to love the 'changed' dad he has become. How powerful love is that we can do that. When he dies I do have that feeling that in a way I can 'reclaim' him as he was. That's why I am determined to give him as good a 'send off' as mum had. What emotions do I feel? Pride at the way he has retained his dignity (in my eyes) in spite of suffering every indignity. Horror at what has hapened and will happen to him. Desperate sadness and guilt that I can't make life better for him. Fear about how I will cope with the next stage. Panic at how I will face life without him. Yes anger too - at so many things - the illness, the ignorance, the lack of joined up medical and social support, my own inadequacy in the face of the challenges ahead. I suppose we don't always pick our emotions - they find us.
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Blue Sea

    your post says it all.
     

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