Am I not supposed to mention dementia

Discussion in 'After dementia — dealing with loss' started by tre, Dec 20, 2015.

  1. tre

    tre Registered User

    Sep 23, 2008
    So David died on 12 December and it is still unreal and too real at the same time. Together with the family I am sorting out stuff for the funeral. I have two poems which I think are spot on but they are sad. I am sad but it seems that now at a funeral you are supposed to "celebrate the life of the deceased". I am fine with this but it sort of feels as if there is a taboo on mentioning dementia. My husband was an extremely bright, kind and articulate man but for the last seven years of his life he had dementia. I do not want to dwell on this but also I do not want this airbrushed out.
    Should I shut up and put up? Throughout the time David and I were together we were honest with each other. To not even mention this feels dishonest but if it makes it more difficult for others.... I just don't know.
    It feels to me that in the way that cancer was unmentionable years ago, now it is dementia that has to be sanitised.
    What do others think?
  2. 1mindy

    1mindy Registered User

    Jul 21, 2015
    I think it's what is right for you not others.
  3. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    I'm so sorry to hear of your loss tre.

    For what it's worth I think you have to make this right for you and David, and if the poems feel right you should go with what's in your heart. Funerals are sad, having lost your lovely husband is a terrible thing. I think if the sadness is honoured along with the wonderful things about him, then in my experience, people will find their own balance.

    The question about whether the dementia should be mentioned is something I haven't really thought about before. My instincts would be the same as yours, I don't know what sort of funeral you are planning but I so hope you have someone who is taking the service of whatever kind is able to incorporate what you need to communicate in a sensitive but honest way.

    Getting this right is so important for you in honouring your life together.

    Peace and blessings. Es
  4. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    I agree with mindy and Esmeralda, tre.
    This needs to feel right for you, and if you can achieve a balance, as Esmeralda suggests, then I believe it will help you to feel you have acknowledged the whole of your life with David, and as you say, not 'airbrushed out' a very significant part.
    Thinking of you. xx
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I agree with what's been said already. This is about you and David. Go with what you feel is right. Wishing you strength. x
  6. Spamar

    Spamar Registered User

    Oct 5, 2013
    I don't I mentioned dementia, but we had a collection for the Alzheimers Society. He'd had it so long, everybody knew, anyway. I prefer to remember the OH he was without dementia, kind and gentle, not the person he became!
  7. meme

    meme Registered User

    Aug 29, 2011
    if it is important to you to mention dementia then do it...there is no right or wrong
  8. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    I did the same thing for my OH. Tre, what is important is that you walk away knowing that you have done the very best you can-whatever form that takes.

    You are in my thoughts at this very, very sad time.


    Lyn T XX
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    The funeral is for you and the person you lost tre. It is to help you send him on his way in whatever way you know he would have wanted and whatever way gives you peace.

    Dementia was the cause of death and if you wish to acknowledge it , it is your choice.

    Others can arrange their funerals as they think best but this one is for you.
  10. jeany123

    jeany123 Registered User

    Mar 24, 2012
    At Allens funeral the vicar mentioned that Allen had dementia for the last few years it was just among the other few things he said about him but I am really pleased that he did as that was a part of him X

    I agree do whatever feels right for you and it will be,

    Sent from my iPad using Talking Point
  11. marionq

    marionq Registered User

    Apr 24, 2013
    Funerals nowadays often lack the solemnity that some people need for a proper ending. I have no issue with that if that is what they want but for me and for others there is a need to give some depth to the occasion.

    You can play Frank Sinatra or whoever any day of the week and certainly at the wake all sorts of memories will surface but there has to be a point whether religious or not that the reason why you are where you are is addressed.
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    I agree with others I think you need to do what feels right for you. I believe the funeral is a really important time for immediate family and it helps us begin to remember and start over in whatever way that means to an individual - do what you want to do and remember David in whatever way you want to remember him on that day.

    We didn't mention memory loss at all but my two young teenagers took the whole service, chose the religious readings, the hymns and wrote the tribute themselves. We didn't have anyone else - they didn't want to mention it and in fact they just wanted to remember her in the way she had always been to them growing up, not the last couple of years in particularly but that was their choice. They did the same with their Dad's funeral and didn't mention his cancer. Whatever works for you will work for everyone else and there will always be the odd critique but hopefully not within your earshot.

    You take great care of yourself in the coming days. Thinking of you xxxxxxxxxxxxxxxxxxxxxxxxxxx
  13. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    Please accept my condolences too, tre. I agree with the others: do what feels right for you.

    I acknowledged it at my mum's funeral, primarily by thanking the staff at her care home who had looked after her through the most difficult years and by saying there was to be a collection for the Alzheimer's Society in the announcement in the local paper. I think its important for it to be mentioned during life as well, not swept under the carpet like some embarrassing secret.
  14. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
  15. tre

    tre Registered User

    Sep 23, 2008
    Thanks everyone. We are having a civil ceremony because neither of us is religious but we are making sure there is a place within it for those who do believe. Yesterday I managed to sort out a place for the wake and it is somewhere David liked and where they were very kind to us.
    I feel that at the moment there is so much admin to do and that it will be the days after the funeral when everyone has gone when it will all sink in. Even now it feels like there are many more hours in the day because caring for David took up so much time.
  16. Sue J

    Sue J Registered User

    Dec 9, 2009
    Tre, I am sorry for your loss and I hope the funeral that you have planned will be as you would wish, sounds like it will be.

    Your question re. dementia being spoken of, I agree with others as you would wish it. I think many who don't have experience of dementia see a funeral as the start of a grieving process, those who do have experience know that is not the case.

    The void that is left is a huge one, when as you say, all your hours were devoted to caring. Take good care of yourself in the days ahead.xx
  17. Slugsta

    Slugsta Registered User

    I am so sorry for your loss Tre. As others have said, the only 'right' way is to do what is right for you. I hope that whatever you plan gives you a sense of peace in the coming days and weeks.
  18. Kristivazq

    Kristivazq Registered User

    Jun 6, 2015
    We used this Alzheimer's Poem...

    My father also passed on 12 December. At my Dad's funeral we did mention his Alzheimer's briefly and at the end of the Eulogy our family friend read this poem. It was lovely. We also asked for donations to the Alzheimer's Association in lieu of flowers.

    Do Not Ask Me to Remember
    Do not ask me to remember,
    Don’t try to make me understand,
    Let me rest and know you’re with me,
    Kiss my cheek and hold my hand.
    I’m confused beyond your concept,
    I am sad and sick and lost.
    All I know is that I need you
    To be with me at all cost.
    Do not lose your patience with me,
    Do not scold or curse or cry.
    I can’t help the way I’m acting,
    Can’t be different though I try.
    Just remember that I need you,
    That the best of me is gone,
    Please don’t fail to stand beside me,
    Love me ’til my life is done.
    - Owen Darnell
  19. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Can I keep that one Kris? Norms posted a beautiful little poem along similar lines last week which I have borrowed for passing on.
  20. Kristivazq

    Kristivazq Registered User

    Jun 6, 2015
    Sure. I didn't write it. Someone sent it to me when I was having a hard time accepting my Daddy's illness. It is heartbreaking yet lovely.

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