What's there, when there appears to be nothing left ...

Discussion in 'I have a partner with dementia' started by kindred, Jul 6, 2019.

  1. kindred

    kindred Registered User

    Apr 8, 2018
    Me again folks, to update you about where life is with me and Keith. As I wrote in my nursing home thread, the doctor said Keith would either survive that illness or he wouldn't, but if he did, his cognitive and general function would take a dive.
    Well, it has. Now, it is like Keith is in a coma, drinking but not eating, fed on supplements, mostly unable to communicate at all, although sometimes raised eyebrows or when our son came, a rare smile.
    Please do not pity me. Pity sucks and threatens the spirit.
    I am still there with him most days and have a little more freedom to do my volunteering work with the other residents.
    I know this stage could last for years so I have thought hard how to cope. Carry on the way I am of course, but ask for nothing. When children are in difficulties, it's vital that we put things in, love, stories, etc etc rather than constantly ask for reassurance that they are OK. So I am still by Keith, drinking tea, remembering when we were University students together, and I am singing, stroking his hand and his neck, reciting poems, reading chapters from a book he loved, generally being with.
    I see many wives and husbands understandably begging their other halves who have dementia to please, please just say you love me. God, don't I understand.
    Even if I no longer hear his voice, no longer have any reassurance, I can go on giving to him. And the love I receive from the other residents and the staff is just astonishing.
    Thanks folks, Talking Point is just the best ….#
    with love Geraldine aka Kindred.
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    East of England
    Profound and moving G. and all power to you as you continue to care for your love to the best of your ability. Hugs for you x
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    There's no pity simply a sharing of the profound sadness of caring for a partner, parent, relative or friend after they are no longer able to show us how much they care for us ... mitigated by the memory of past times
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I think there is always something left until a person draws their last breath. We may not know it and it`s painful and upsetting to witness but I don`t think we can ever presume.

    It is said the hearing is the last to go. I often wondered about touch. I was sure my husband knew I was with him when I held his hand or stroked his arm.

    I found this really interesting @kindred. However many times my husband didn't react to me, he always reacted to our son.

    Of course you can continue to give. Whether we get something back or not at least we give all we can and hope our giving is received.

    Sad times for you.
  5. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    Do you think it's time to give yourself a couple of days off from being 'Jolly Geraldine, everything is fine tra la!' ?

    I know you love the time you spend entertaining the other residents and you seem like Superwoman to me but clearly everything isn't fine right now.

    How about some quiet time with Keith and some time for you elsewhere, doing non-dementia things? Please go easy on yourself.
  6. kindred

    kindred Registered User

    Apr 8, 2018
    Ooo that hurt.
  7. kindred

    kindred Registered User

    Apr 8, 2018
    Thank you so much folks, so appreciated your loving Input.
    Thank you.
    Love and best, Geraldinexxx
  8. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    More hugs winging their way to you. I'm sure you know the poem by Leo Marks, it sprung into my mind when I read your post:
    'The life that I have
    Is all that I have
    And the life that I have
    Is yours.
    The love that I have
    Of the life that I have
    Is yours and yours and yours ...'

    Love to you both as always XXX
  9. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    I'm really sorry - it wasn't meant to. I truly admire everything you do and can't imagine where you find the strength to always remain upbeat and cheerful. What I mean is that you seem to set yourself impossible standards. How can you possibly carry on 'as normal' when you are clearly having the hardest time?

    No one expects you to be cheerful when you are grieving. Please give yourself a break.
  10. kindred

    kindred Registered User

    Apr 8, 2018
    Oh that is so so lovely. Thank you. So lovely. Gxx
  11. kindred

    kindred Registered User

    Apr 8, 2018
    No worries. Look, things have not, objectively, been fine for me for years and years as I started to be a carer at the age of 4 when my mum was paralysed. I could say such a lot but carrying on as normal is one way to cope. Have you ever read: Mans search for meaning: the author, a psychiatrist imprisoned in Auswich, says that our way to survive is to ask what life wants from us rather than what we want from it.
    Good one.
    We could talk more, sweetheart!
    love and best, Geraldinexxxx
  12. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    I'm not going to pity you. I just want to thank you for your posts which have been an inspiration. Reading about how you cope with things helps to stop me from pitying myself, and I can't afford to pity myself as I haven't the strength.
  13. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    High Peak
    It is in indeed a way to cope. But a lifetime of caring.... sheesh. Not many of us could do that and still be standing. Your inner strength and resilience does you enormous credit....

    I learn a lot from your inspirational posts. I know you 'ask for nothing' but I hope you can accept the concern, care and goodwill from your avid readers here on TP. You deserve care every bit as much as those you care for. (And I can't be the only one who desperately wished you worked at their PWD's care home... :))

    Take care of you... x
  14. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
  15. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Not pity @kindred but I send an acknowledgement and understanding of what you’re going through.

    Sylvia your post resonated with me so much. I held Bill’s hand, stroked his arm and talked to him until he drew his last breath. We didn’t have children but a very close young friend received Bill’s last words. He opened his eyes, pointed at him and said ‘Bonny boy.’ - as clear as a bell. It’s a memory I cherish (so does the bonny boy!)

    Thinking of you both @kindred.
  16. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    Hello Geraldine,
    I read all of your posts but this one was so relevant to my situation and I understand every thing you say so much so that I could have written most of it myself.
    My husband hasn't spoken for over two years but I go in everyday and chat to him and hold his hand, but to be honest I think its more for me than him. Its strange but I always see him with my minds eye, like you, remembering and longing for days that have gone.
    Today however I had an awful shock, a few weeks ago I was asked to go to a local council day about dementia and a group of us, along with some residents from the home went along. It was all too much for my husband, he became quite agitated and clung to me like a child and I cuddled him until I could get transport to take us back to the home.
    I didn't know that photos had been taken for the council newsletter and the one picture they used is of us in the center of the page, I am holding this frail, scared elderly man who is clinging to me.
    That picture has made me cry, I don't want to look at reality, I want to see the larger than life man I know and always see in my mind.
    So like you Geraldine, its not pity you want and the smile will be back on tomorrow and I will be at the home as usual giving out the morning biscuits and cake and singing along with the others but I so wish I had never seen that photo.
    Love to you Geraldine
    Kathy xxx
  17. PalSal

    PalSal Registered User

    Geraldine...you are something else. I know it is what you wish to do and you find the strength. I do think helping others gets us out of ourselves which is always a good thing.
    Take care
  18. kindred

    kindred Registered User

    Apr 8, 2018
    Oh my dearest, yes, that is such a shock, such an intrusion on your intimacy as well. I know, you know I know. I love it that you do what I do, totally honour that so much. ANd thank you with all heart got telling me. With you all the way. With love to you, too, Geraldinexxxxxxx
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    @kindred - Geraldine - we all need someone to love - and when that lifetime of love is like a drifting mist, we cling on and hope to capture just a wisp of it........for one last time.

    Hang on in there, you are doing the right thing for you and himself.

    My parents, grandparents and my son, all died without family there, we all hope that we can make that last goodbye, and hope that our loved one is eased lovingly out of this world and into whatever we each believe is next...........
  20. AliceA

    AliceA Registered User

    May 27, 2016
    I think these words say it all.

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