1. Vik

    Vik Registered User

    Jan 29, 2004
    I haven't been on the forum for a while as so much has been happening. I guess my Mum hasn't been on for a while (C Waring) for similar reasons (coupled with her computer having over 2000 viruses and not working!)

    My Dad was diagnosed with dementia aged 57. We think he showed symptoms since his late forties (isn't hindsight a wonderful thing?). My last posting around May time updated on the fact that we had found a wonderful care home for him for people with dementia of all kinds, under 64 years of age. The youngest person in there is in his early forties I believe. The staff are wonderful and the place is quite cheery, not like some of the homes I went to visit. After 4 attempts, and lots of fighting, I managed to secure continuing care funding for Dad to stay there.

    He was there 7 weeks. Unfortunately, Dad had a heart attack on 2 July 2004 and could not be resuscitated by paramedics. The dementia had meant that he could no longer work out how to take his inhalers for his asthma. This led to frequent attacks and difficulties in breathing, which in turn weakened his heart. When he was a well man, he never suffered with his asthma at all (no-one even knew he had it) and was an avid mountain-walker. So, whilst his death certificate doesn't mention dementia, there is no doubt that it was the dementia which snatched him away from us. It is a cruel world.

    However, on the other hand, Dad was very poorly and miserable with the dementia. He hated the life he had and it was horrendous to see him suffer and deteriorate as he was. He wouldn't have wanted that. At least this means he won't suffer anymore and we won't have to watch the wonderful man whom we loved so much fade anymore. He can now be a shining happy memory. At least, that's the theory! Still, these things take time.

    We, as a family, decided to donate his brain to a professor in Manchester who has a "brain bank" for his ongoing research into dementia. I think he was particularly interested in young onset dementia. We all take the view that if our donation could just help one family, and prevent some of the heartache we have endured, then it will be well worth it.

    So, suddenly, my day-to-day involvement with dementia is no longer here. I am hoping that I can try to have a life which one could expect to have in one's twenties, rather than waking up in the early hours of every morning wondering how on earth we will manage to get through the next stages. However, I will continue to fundraise wherever possible and educate people (willing or not!) about the devastating effects of the illness. In time, I think I will offer my services as a volunteer to befriend another family similar to my own, perhaps. For now, though, I need to heal.

    Anyway, I thought I would update people generally and take the opportunity to thank you all from the bottom of my heart for the support you have provided for me, my mum and my sister, in the many postings and advice we have read on this website over time. It is so comforting to know that people care and understand. Quite frankly, it can sometimes be a life-saver, to simply know that you are not alone.

    Keep it up

  2. carol

    carol Registered User

    Jun 24, 2004
    Dear Vikki,

    I am so sorry to read your sad story. Your Dad was so young to have lost his fight with this terrible disease, and I cannot begin to imagine how you feel. As you say he won't have to suffer anymore, and I hope you can remember him when he was well and happy, and free from alzheimers.

    Best wishes,

  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Vikki

    thanks for updating us.

    While it is sad that you have lost Dad, and at such a young age, I believe you are correct in appreciating that the outcome will have been better than his possible long-term decline, which he would have hated.

    You have done us all a service in highlighting another good care home, and the fact that there is at least one more good one that specialises in youger dementia sufferers.

    I would expect it to take a while for you to adjust to your new life, so take it slowly.

    Best wishes
  4. JoJo

    JoJo Registered User

    Sep 25, 2003

    Sorry to hear your sad news. You sound like a very close family and I am sure you are all helping each other in your grief. Your father's story is much like my own dad's and I know it is horrible that your memories of him in the last few years are of him affected by this awful illness. I now find my best memories of my dad are those I have from when I was young - teaching me to ride my bike, skate and swim, and I cling onto those now the roles are reversing with me the parent and him the child.

    I hope I have the strength you have in the years to come

  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Vikki, so sorry to hear about your Dad, this will be a hard time for a while, but then do try to move on as you say. I am sure this is what your Dad would want. Thinking of you all. Love She. XX
  6. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    hi vick,just been making a search on brain donation ,yours was the only one that came up ?,was the decision taken after your dad died ,how could it all be arranged so quickly ,was it all aranged in hospital ,?and can this be arranged by the nexed of kin i thought it had to be arranged in advance by the doner ,hope you are still reading the post ,i would welcome any information ANGELA.
  7. Sandy

    Sandy Registered User

    Mar 23, 2005
  8. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    THANKS SANDY,that kept me occupied still not sure if it has to be with doners consent as it needs to be sorted in advance ,i will phone MAN BRAIN BANK when i can bring myself to take things further ,ANGELA
  9. Vik

    Vik Registered User

    Jan 29, 2004
    Hi Angela

    Sorry I haven't replied before now. I do still read some postings on TP, but must have missed yours - sorry.

    We arranged the donation of Dad's brain after he had died. It wasn't something we had got Dad's written consent for, but we managed to arrange it through the coroner, funeral directors and the hospital. Dad was always one for helping others (to extremes at times!) so we knew that this is what he would have wanted.

    Mum had to sign a form for consent for the donation, as Dad's next of kin. The funeral director passed it on to the doctor and the coroner.

    We found the professor in Manchester and I spoke to him personally to decide if this was what we wanted. He has since sent a preliminary report to Mum on his findings, and we will get another, I think, when he has completed his work on Dad's brain. His work is very interesting and I wish him well.

    It is such a personal thing, and a hard choice to make. Certainly for us, we knew it was the right choice. This disease is so terrible and I so desperately would like to see a cure found.

    If you want to ask me any more questions about this, please feel free to send me a private message or post a reply to this thread.

    I hope you are well and are managing to keep your head above the water.

    Kind regards

  10. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI VIKKI. thanks for your reply ,unfortunatly i left it to late ,my JIM died on the 21 may ,i admire you greatly for doing what you did ,even if i had the chance on the last minuit ,i would not have been able to go through with it ,so i am left wondering if it really was AD.not that it matters to JIM now ,he is now at peace ,I would still be interested in your outcome.thanks again .ANGELA

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