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. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    Dearest Geraldine, I send to you Light and Love to you both. Our pain is great but our love is far greater.
    To care for someone as deeply as you, I and so many on here do for someone so close to our hearts, love just Love, it does not matter one iota if love is one way.
    The is only Oneness in true Love. You and Keith know this. All blessings Alice. Xxx
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    In general science is proving that awareness is there even when it is not apparent. Several neuroscientists have had to rethink when the have recovered from a coma or near death experience. Some have had to tear up what they were taught.
    Sound, touch and love, do affect at the deepest level. Kindred is doing all the right thins instinctively through love. The fact she still empathises with other residents, proves just how deep her love is.
    You are right, Kindred, 'Man's search for meaning' could help others.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,731
    Kent
    I agree. I have always remembered them from the film. I don`t remember the name of the film but I remember the poem it was so inspirational it is etched on my heart.

    I can visualise that Izzy. :)
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    That lovely poem was in the film Carve her Name with Pride and I remember them from the film, too. I believe the poem was used as a kind of code between Violet Zabo and the person 'handling' her in this country. Beautiful and profound words, it's so so good to revisit them. with love Kindred xxxx
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Oh thank you so verymuch. Geraldine with love, xxxx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,731
    Kent
    Thank you. Now I remember. :)
     
  8. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    254
    Thank you. I am struggling to cope with no response from my OH when I visit him now. He is permanently confined to bed and thankfully eating and drinking well but he does not communicate at all just stares at me as if he is trying to work out who I am. I chat, smile and when he lets me , hold his hand. Hold cheerful conversations with the Carers when they come into his room. Take him in chocolate which he seems to enjoy but each time I leave I am heartbroken and I’m finding it harder to go in now . I used to go in every day but now only three times a week as I am so emotionally drained after my visit. When I am at home I chat away to his photos around the house and when I open my phone (I have a lovely picture of him as my screen saver) all photos of him as he used to be and in my mind still is. I suppose that is why when I see the reality it hits so hard. Reading your post makes me realise that I have to get past this feeling that he Isn’t him and he is still my lovely man inside there.
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Jean, all my fellow feeling with you. It is a considerable struggle to cope with a non response. Bear with me at a tangent for a moment - I used to be in charge of a unit of profoundly handicapped children (PMLD - profound and multiple learning difficulties). And I had to always be on alert for my staff losing confidence and energy because they were giving all the time to children who could not respond, often who were blind and deaf as well as brain damaged. Putting love and energy into someone who cannot respond is very very tough and all honour and praise to you for doing this. Yes, I agree, we have to get past the feeling that it isn't our beloved menfolk. I am absolutely sure there is part of him that knows you are with him and draws such comfort from it. K is not confined to bed yet but I am sure this is because I go in more or less every day and so they bring him down in a special recliner chair. So I am able to interact with everyone else and act like a member of staff too while I am there. This makes a huge difference. When I have to go to see K in his room for one reason or another, it is much tougher on me and you have been doing this for a while. You are a good woman.
    I find it immensely comforting that the majority of staff at K's home are from cultures where my visiting and being with is regarded as normal, what wives do.
    This is so hard for us, I know, just a small signal of recognition is all we ask … but we are being with our beloved men at the toughest time of their lives, seeing them through and being together. What more compassionate task can a human being undertake? With love to you, and as I said, such fellow feeling. Geraldinexxxx
     
  10. dancer12

    dancer12 Registered User

    Jan 9, 2017
    478
    Mississauga
    Hi Geraldine aka Kindred:

    You are such a kind and have such a loving soul. My mother-in-law were similar to you always having something nice to say about everyone. So easy to talk to.

    People talk in different ways, some with a soft voice, others with an aggressive voice, some with excitement in their voices, others in a high pitched voice (like mine) and people have different ways of listening, some want to hear only the good, others hear only the good, others have selective hearing, others hear only voices at certain levels. But as far as I know there is only two types of touch - the SOFT & GENTLE touch & the aggressive touch. In hospitals nurses always touch their patients because it brings them warmth and a sense of calmness.

    I'm sure your husband feels much warmth & comfort that you are there & just gently & lovingly stroking his hands.:):):):):)

    Many cyber hugs & love sent your way.
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    what lovely words, dancer, thank you so very much. Oh I so so agree about the power of touch. Thank you with all heart. with love, Geraldinexxxx
     
  12. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    So today, knowing the doctor had been in to see keith, I called in after work. The doctor had just said that he was going downhill rapidly and I guess I knew that but what else can he say? The manager is talking about trying for CHC but as we all know, that is extremely unlikely.
    Keith was in bed so I went up to see him of course and to give him a drink. As it was so hot, he had a light sheet over his legs and a gym top on his top half. He looked so handsome and beautiful, lovely slender shoulders like he had when he was a boy, but I don't think he registered that I was there. Or at least, registered that someone was there but as to whether it was me … but I gave up worrying about that about a year ago. I know who he is … it has long ceased to matter to me if he knows who I am. He is not going to get lost, and if he did, I would find him. He always found me.
    Thanks folks, thank you. with love, Geraldinexx
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    While someome knows no one is lost, and God/Love always knows.
    I hold you both in the Light and my love. Xx

    If your ears burned to it was because I mentioned you. I am staying in a care home with my husband on respite.
    The lift has broken down this on this wing. Staff are carrying trays and wondering how to get some to bed.
    It is an old house. My muscles are not very happy either! I also mention you when I spoke of slipping in to the family, unlike you I do not sing!
    All blessings to you both. Alice xxx
     
  14. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    167
    Hi Geraldine
    Stay strong, they say that one of the last senses to go is hearing, so although Keith may not always appear to be responsive, he will know that you are with him and take comfort xx
     
  15. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Alice and Annie thank you with all my heart. Your words are so encouraging and supportive. Yesterday K smiled towards the end of my visit and my goodness. He held the smile and we just looked in each others eyes and in those moments, a lifetime of love, caring, compassion, empathy and the wildlife heavens we shared together, and the humour. We were laughing from the time we got up til the time we went to bed.
    Today, no response, but that smile says it all, for now and probably forever.
    Thank God I have known love and companionship like this.
    all my love, guys, thank you and back when I can. Kindred.xxxx
     
  16. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    491
    Just to let you know that I am here and listening - and holding you both in my thoughts and prayers.
    Sending my love

    XX
     
  17. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    837
    Male
    Newcastle
    On the day that he died (from cancer, he did not have dementia) and had stopped responding to anything, I kissed my Dad for what turned out to be the last time. To my astonishment he wrinkled his face and in my mind I could hear his cry of "whiskers" as my beard tickled his cheek. Never give up on the power of touch even in the most trying circumstances.
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Toony and Northumbrian, thank you with all heart, so much appreciated.
    K did not respond to me today, open eyes but looking into the distance and refusing to eat. This is going to be hard to type. I did wonder if he was starving himself to death but surely someone with dementia would not be able to have any deliberation in this?
    I did say to him a week or so again, darling, are you trying to starve yourself to death? And he actually replied by saying, I can't move.
    Now, whether this is an answer or a reason or what I do not know. I keep whispering to him that I want him to be with me forever, but if he is lost I will find him. One of the nurses was passing and heard this and burst into tears. So I ended up comforting her …
    Staff - and residents - so kind and loving to me today - and yes, people with dementia can have empathy.
    Keith is so beautiful, so boylike that I keep expecting him to sit up and be normal and admit he has been faking it - a bit like the ending of that wonderful film Birdy.
    I took in a big bunch of my sweet peas today to show the residents one by one. It was a good activity.
    Thanks guys, I so agree about touch. There is a lovely poem by Gavin Ewart called the Late eighties - all about the power of touch. But I cannot find a copy anywhere!
    Love, best and thank you, Geraldinexxxx
     
  19. nitram

    nitram Registered User

    Apr 6, 2011
    19,142
    Male
    North Manchester
    Sorry that you are in this situation.

    Also sorry to ask you to consider - 'Is he dying because he is not eating or not eating because he is dying?'
    Part of the process of the body shutting down.

     
  20. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    491
    Hi @kindred - I love poetry and was intrigued about the Gavin Ewart poem (a poet whom I have not read much). I tried to find it but unfortunately it was not to be - all I found was this bit from the NY Times:

    'There are very affecting poems that confront head-on the indignity of age. ''The Late Eighties,'' about his mother, which begins ''To her / I am a coloured blur,'' ends, poignantly: I toucht the body changed so much, she understands some tenderness through bony arms and hands. Contact is joining and a fact; we once were one, and touching's how all lovemaking gets done".'

    I was also intrigued by this, so poignantly amusing, but couldn't find it either:
    '''In the Old People's Home (1914)'' allegorizes about such vessels as H.M.S. Incontinent, H.M.S. Repetitive, H.M.S. Wanderer and H.M.S. Vainglorious in their ''last anchorage,'' attended by ''the officious tugs Snapper and Orderly.'' Mr. Ewart seems haunted by the realization that ''a good many lasts have taken place already'' and outraged by what awaits everyone in indifferent and sterile modern institutions'.

    So, so sorry that Keith is refusing to eat. Whilst I cannot and would never speculate on his and your situation, when my Mum was eating next to nothing her habits were so akin to a teenage anorexic (secretiveness; hiding food; disguising reasons for not eating; insisting everyone else had loads; thinking she was fat when she was tiny) that I mentioned to many health professionals and friends alike, that this seemed to be a form of dementia led anorexia. It seemed as if eating was the one thing she felt able to control when all her other abilities were failing her.

    Much, much love to you both and wishing I could give you a proper hug rather than just a virtual one!

    XX
     

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