Grateful for the 'long goodbye'

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tender Face, May 31, 2006.

  1. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Tough one, but I’ll say it anyway.

    I don’t mean to be purposefully controversial or upsetting to anyone, but I have to state I am glad (not quite the word I wanted) that mum’s demise appears to be through some (still yet to be diagnosed) dementia illness.

    Glad – not because I have seen too many family members ripped away by heart disease, by cancers – diagnosed too late for any treatment, by genetic defects which cut short lives even in infancy, let alone young adulthood. I’m sure many here, as me, will have their own tales of tragic family legacies.

    For some months since realisation dawned that mum’s own battles with cancers and arthritis and sundry other more minor but cumulative ailments (general ‘wear and tear’ one doctor dared suggest) were being radically overtaken by this new ‘monster’ I have felt so angry, so cross, so despairing….. how could we surmount all these other hurdles to be presented with THIS?

    Maybe it’s my slide into ‘acceptance mode’ that after her once weighty body had taken the battering from years of treatment for cancer, I had begun to think she was invincible.

    This mother. This imperfect mother, and me such imperfect daughter.

    I think for many years I expected us each to slide into some imperfect oblivion in which our differences would not matter, our ‘past imperfects’ be erased.

    Today, I look back on what mum did for me, and what I did for her – very little mutually, it would appear. I was ‘daddy’s girl’. Didn’t give two hoots if mum wanted me to go round town with her or try cross-stitch… just wasn’t girlie…didn’t live up to her expectations of a daughter…. and then there were times I didn’t rate her so highly as a mum……

    But today, right now, for all she is driving me ‘spare’ – I love her. The hurts of the past matter not. It’s the here and now and being able to hug each other like we have hardly done in the last 30 years … and strangely, at last, to be able to say to each other that we love each other and to mean it…..

    It’s hard to express how grateful I am to be given a chance to care for my mother in a way I would obviously never have wished for either her or myself – and yet to be given a chance to assuage the guilts of the past – on both our parts - and suffer less from the guilt of the present offers more comfort than having had her ‘taken from me’ without the chance for a reconciliatory and loving ‘good-bye’.

    Some may understand……

    Love, TF, x
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    There are some very interesting, and unexpected things posted on TP by carers who are members. You have posed more that is thought provoking and rings bells.

    Jan and I are in a totally different situation [spouses] but I have been grateful to be able to give her back some of the support Jan gave me over the many years of our marriage. To have lost her suddenly would have been devastating.

    and then.....

    I also reflect that it would have been a mercy for her to have been taken quickly, as her present life is no way for anyone to have to live, even though her care is second to none.

    It would also have been very difficult to lose her suddenly from my point of view, but I can look at the 15 years it has taken to get to the current stage, with goodness knows how long more to go, and see our very different lives have been on hold for too long already, with no prospect of that changing.

    I guess we come to another of Joanne's recent sayings
    We have no choice, we must get on with it, and make the best of a sad situation.
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya TF and Brucie,
    TF I think the changes I have appreciated have been in my dad. He and mum were always very close, but he used to work long hours and I think never appreciated what mum did for him . But what a way to learn!
    My heart sank on Monday when I spoke to the Manageress of the Nursing Home, and she told me that they had two clients who had been bedridden for five years - they eat well, they are nursed well, and they just keep on going. I do not want another five years of waiting. The other thing I have found is that it becomes hard to remember the good times.
    Hang on to it TF, record it in pictures and writing - because now I think, did mum know how much I loved her, was her memory of me as the daughter she loved, or the teenager she had struggled with, or the 'other woman' I became who was with her husband?
    Another thing I struggle with is not feeling. Mum is in a box, I go and see her, then I get on with the rest of my life - it feels wrong to do so.
    So an extended goodbye may not be a bad thing, but sometimes it gets beyond a joke! Sorry if this sounds callous; I am not, I will be heartbroken when my mum does die, but I don't understand why.
    Love Amy
     
  4. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    This is a really difficult one. I think maybe our feelings change as the Alz progresses.

    As Amy says "I go and see her, then I get on with the rest of my life - it feels wrong to do so." This is how I am feeling about Aunt at present - she is comfortable, well cared for, alert, still recognising us etc We always have a hug (unheard of before her illness) but I am somewhat surplus to requirements or so it feels sometimes. She could well go on for years and as long as she has this simple quality of life then I shall continue to want her to keep going.

    It was different with Dad. After years of knowing something was not right but before we had any understanding of Alz during which we "put up" with his uncharacteristic mood swings and behaviour that was totally alien to such a kind and gentle person, he was suddenly struck with a heart problem and immediately the symptoms escalated. For 18 months we were "lucky" enough to hold onto him and I wouldn't swap that time. I fondly remember our weekly trips sitting with him in Sainsburys cafe while Mum whizzed round with her trolley, keeping him busy allowing Mum those precious moments to focus her thoughts elsewhere for half an hour at a time. We always had the same conversatons, where was she, how he thought he ought to go and help her, plus the usual delay and distract techniques. Not exactly quality time as most people would see it but to me those memories are positive ones - the negative ones kicked in when we got him home and then went through the other ritual of wanting to "go home".

    I grieved during that 18 months, I fell apart at the thought of him not being there to hold or to touch. I clung onto him physically and emotionally. However when he had to be admitted to an EMI ward for respite both Mum and I prayed that he would be released from his nightmare, neither of us could bear to see his torment continue. The 6 weeks in hospital seemed like years, we wanted him well enough to come home but he slipped away for ever. I waited for the grief to hit but it never did - at least not on the scale I had expected, not to the level I had already experienced prior to his death. I will be eternally grateful for those 18 months even with all of the traumas they held. Had he been taken sooner then this "Daddys girl" doesn't think she would have ever been much good to anyone for anything.

    Losing a loved one hurts beyond description whatever the circumstances - my 16 year old nephew was lost in a tragic car accident with his 16 year old friend, my friends 2 sons aged 20 and 22 were lost in similar circumstances just before Christmas. At the very least I can look back and appreciate that Dad had a tough but good life, that he was loved by many not just those closest, and when he passed Mum and I were at his side. We got to say our goodbyes. No I wouldn't change what happened even if I could.

    TF - make every moment count, good and bad, all memories are precious.

    Kriss
     
  5. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Another dimension?

    My Mum has been in considerable pain over the last 25 or so years that she has had rheumatoid arthritis. When she fell and fractured her hip, she spent the first few days sleeping really soundly for much of the time and free from pain because of the drugs she was given. Unfortunately she never walked again properly because she had become very frail and her "vagueness" had become definite confusion and she is now in a nursing home.
    It has been very distressing to see her so ill and upset, but now she is settling down I am learning much about her past life that I didn't know or appreciate before. She becomes completely immersed in the past and forgets about the present. She kept asking if we'd heard about her brother Eric, who was listed as missing in action in 1942, and was finally reported as having died in a Japanese Prisoner of War camp in 1945. It was almost like reliving these tragic events with her and I hadn't realised how traumatic all this must have been for a teenage girl.
    Despite her poor memory for words and recent events, she seems to say some wierd and rather philosophical things which I've written down in the form of poetry. In fact one poem was highly commended in a competition recently.
    At first I was rather frightened by her vascular dementia and my children (27 and 29) won't visit unless I go too. Having read the posts on TP and come to understand more about the causes of dementia, I'm not so disturbed by it. I know my Mum is still the same person inside that frail, thin body and she is trying hard to communicate with me, even though her brain isn't functioning properly.
    My Dad had kidney and heart failure before he died of a heart attack at 84. I suppose you could say that dementia (what a horrible name!) is really just a type of brain failure.
    I have also wondered whether living in London during the Blitz and working in a factory making aeroplane parts has had anything to do with my mother's illnesses. Mum doesn't seem to be as in as much pain as she was before, or perhaps she is less aware of it. Dementia certainly makes you differently about life!
     
  6. Whocares

    Whocares Registered User

    Mar 18, 2006
    27
    My Mum died two weeks ago today very quickly from a chest infection. She suffered with dementia for around 2/3 years but had a "normal" life up until last year. She spent the last 6 months in a nursing home and our "long Goodbye" could not be described in any way as pleasant, I have to admit if Mum had been "happy crazy" I would have loved to have kept her for a few more years. My lovely Mum cried all the time and looked to me and my sisters with such fear and confusion whenever we visited (daily) that it was worse torture than anyone should have to bear, her or us. She always recognised us and she sometimes knew something was wrong. None of us had and past issues to resolve she knew she was loved, we knew she loved us.

    The long goodbye could be ok

    Ours was hell

    J
     
  7. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    It's so interesting to read about everyone's different experiences.

    My dad is happy at the moment. we took him out for a drive in the country yesterday and a pub lunch, then back to our house for tea and biscuits and a sit in the garden. He evenatually (after 4 hours) said, "Will you take me home now. I've had a lovely weekend away". He has no concept of time anymore and thinks I'm his friend. He will not accept that I'm his daughter. :(

    But our long goodbye is seeing his original personality still shining through. The laughs, the corny jokes, the kindness is still all there.......... for now anyway. And while it still is I'll make the most of every minute. I am sure the hard times will come all too soon. Until then I will gain my pleasure from seeing dad smile and be happy, even if it is just the simplest things that make it for him. They are not memories for him, but they will always be treasured memories for me

    Jarnee
    X
     
  8. PatH

    PatH Registered User

    Feb 14, 2005
    301
    N.Ireland
    the Long Goodbye

    TF,
    you have made me think about what has happened to us in the last 10 years.
    For about 9 years this AD robbed me of my husband and friend. He didnt allow me close and sometimes, to be truthful , it was difficult to accept that what was happening was always Ad related. We were both constantly moving from one trauma to the next.
    Within the last year as he enters his next stage of Ad I get glimpses of my loving husband( small reactions but massive feelings).I can get close which allows us to be at peace with each other even in the silence.
    So the long farewell has given us both the peace and love we always had, but had got lost in the hell of Ad.
    Thanks TF youve helped.
    Pat
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    It made me cry when I read you post TF, as I USEto feel exactly like that.

    when WhocaresSaid
    I thought how lucky , I never new that or mum me .


    I say USE to because when I felt like that it use to bring on a guilt trip for me, in any area of my own outside life without mum . So I can not Indulge in thinking like that anymore as all I would do is cry & feel guilt & there I was thinking I had let it all go , but it still brings Tears to my eyes with unresolved issues from my past , dose it ever stop I wonder ? So AD has been a blessing for me , giving me time with my mum geting to know/understand her past why she was like that ,But now I feel it will never make up for the childhood/adulthood love friendship I have with her now that I never had with her then

    So I sing to my self singing words of Wisdom let it be let it be .

    Thank-you TF for shareing Its been very thought provoking ,since you first posted this thread
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Thanks all for the responses to this.

    (Whocares – I feared what I felt compelled to say may be distressing to some – hence the exclamation on my post. You are naturally ‘raw’ – but so brave and thank you for responding publicly to this thread).

    I am sure you – as all others - will appreciate I am not exactly going about life with a huge grin on my face about this situation. It is simply my personal way of trying to find some good out of any evil (my coping mechanism – although it often fails me – and anyone who had seen me with mum over the last 48 hours would have seen me at my most pessimistic, snarling, horrible ‘worst’ – given she has been at her belligerent best… and ‘overwhelming love’ – from either side - just didn’t come into the equation!)

    In part, I think the compulsion to start this thread has been my own recognition that I am experiencing personally the converse of ‘darkest hour before the dawn’, and instead appreciating that I have gained some ‘Utopian’ sunrise which I recognise, thanks to people sharing what they do here, that I MUST save to help me when the darker hours come.

    How I wish I had had unconditional love from my mum throughout the years. How sad it is that I seemed to have gained, only now, her appreciation of anything I attempt. How sad it is, that only now, because she recognises when lucid, just how vulnerable she is, just what I do for her, that she actually NEEDS me and that I am not just a ‘trophy’ child. I have noted previous comments about AD ‘magnifying’ behaviours – just now, I feel it is ‘tempering’ mum’s life-long critical view of me…. All I ever craved from her was to be appreciated and encouraged (which my dad seemed to do without effort!) – how tragic it has come ‘to this’ before it should happen……. How pathetic! 43 and still trying desperately to be the ‘perfect child’……

    For now, I just want to appreciate this special sunrise and ‘bank the memory of it’ for the seemingly inevitable rainy days ahead.

    I would never have appreciated this dawn so much, had it not been for learning from some very special people on TP.

    Hugs, all, Karen, x
     

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