Please don't throw me away, breaking my promise

Discussion in 'I have a partner with dementia' started by kindred, Apr 17, 2018.

  1. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    Need your help, guys. Tell me if you have ever experienced anything like this with your partners.
    For several days now, Keith has been unable to communicate. His voice is gravelly and low and too much effort. His head is kind of locked in a leaning back position, despite all we do. Doctor has seen him and is coming again soon. Believe it is a version of the virus which has been going round the home, and everywhere else it seems to me.
    I can only sit and hold his hand, but he is also twitching badly. I'd be so grateful for your thoughts and experiences of anything like this.
    love and best, Geraldinexxx
     
  2. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    116
    Hi Geraldine
    Sorry to hear about this development. I don't have any experience of this so can't offer any advice, but am thinking of you. I am sure others will be along with support soon xx
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,323
    Kent
    Only a guess @kindred. Could your husband be retaining fluid in his throat and lungs?
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Xxx
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    Thank you for your loving care, guys. Just an update. It has been hard, Keith has had a high fever and the doctor who has seen him many times cannot account for his symptoms. Said, and meant it kindly, that K will either recover or he won't.
    But I think slowly he is recovering. He has got a little of his beautiful voice back but is not really keen on food. Not himself, but perhaps asking too much too soon.
    Can't really write any more as am exhausted. Will keep in touch anyway, and thank you.
    with love and best, Geraldinexxx
     
  6. 2jays

    2jays Registered User

    Jun 4, 2010
    11,597
    West Midlands
    Wrapping you in a blanket of hugs xxxxx
     
  7. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    116
    Sending you hugs and love xx
     
  8. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    Thank you for the hugs and love, guys. Much needed.
    Off I go today, with our son, and so much better! Keith able to communicate with his eyes and at some point said,
    ABSOLUTELY MARVELLOUS.
    I am so so pleased also because the last coherent thing blue eyes said to me at the beginning of his illness was
    I'm sorry ...
    And I could not have borne those to have been his last words to me. Nothing to be sorry for, beautiful blue eyed one.
    Absolutely nothing at all.

    Thanks guys, thanks for being with us.
    Geraldinexx
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,314
    East of England
    So glad to hear your better news G. in your roller coaster of illness. Hugs to you x
     
  10. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    OK guys. I'm angry. Today was keith's deprivation of liberty business and I told the social worker on the phone that please don't do this AGAIN as Keith is paralysed now and cannot communicate. But no, they have to come and put me and the home through it again. Asking distressing questions and do I have an end of life plan (of course I do and it's registered with the GP - but hey, let's go through it again) and does my son know (over my dead body folks, my prime imperative is to spare him: I grew up with a profoundly disabled mother (MS) and I don't want him involved any more than he is, which is a lot. And does my son come to see him - I mean of course he does but what has that got to do with THEM?
    And on and on, and then can I wake Keith up so the social worker can TALK TO HIM. That would be a neat trick, but I duly wake him and she keeps asking him if he is happy? And there is no focus or reply, so she says to me, is that all you get? and I say yes, at the moment it is. So she tells Keith she will come back again in a year and talk to him then. That will be another neat trick, guys.
    And they make some recommendations which are beyond inappropriate and the home manager writes a protest which I sign. They also said they want to send a speech therapist. I explain that I am qualified in communication skills (got a University Diploma from UWE in severe learning difficulties, specialising in just that). They tell me the speech therapist may have some tricks of her own ... I don't want it to sound like I don't care, but I think we are well beyond that.
    Oh there's loads more but you get the drift. Meanwhile, the lovely activities continue as usual, thank God. And the dog therapist is booked in as a regular.
    Thanks guys, so good to talk to you. with love, Geraldinexcxx
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,314
    East of England
    This is exactly what I dread for my husband and I am really upset for you @kindred it is beyond ridiculous because it’s unkind. Palliative care in the full sense of the word, keeping comfortable and doing enjoyable things is the best thing when a person is so affected. At least the place where he lives is like that, careful thoughtful interaction with a loving heart.
     
  12. 2jays

    2jays Registered User

    Jun 4, 2010
    11,597
    West Midlands
    Well I’m glad the social worker got to tick their boxes and cause untold mayhem just so they can tick their boxes NOT!! :mad::mad:

    More blanket hugs for you both xxxx
     
  13. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    476
    Hi @kindred - so sorry that you are both having to go through this ridiculous circus. I read your post the other day - and today I have just received Mum's DOLS documentation which has been approved, despite it containing a host of wrong information.
    When they rang me in advance about it and told me they would be asking Mum questions, like you, I replied 'Good luck with that'.
    The visiting doctor said that Mum lacked cognition and could not give appropriate replies ...... duh! No **** Sherlock!
    Bless her, you get a few short sentences that occasionally make sense, the rest is just words that she fancies saying.

    As you will know, DOLS is only in place for 12 months .......... IN CASE THINGS CHANGE! We all know that this is just a downward spiral - so why? I'm just thankful that Mum really doesn't understand what is going on. If she did and was presented with the 'do you want to be here?' who knows what she would have said?

    I am not surprised that you are angry - thankfully I think Mum just thought that the Dr was a nice male visitor, and as no further 'recommendations' were made regarding her care, it's status quo.

    Aside from all that, I have not been posting recently but have been holding Keith and yourself in my thoughts and prayers.
    If you are still seething from the DOL's business click on the bit of music below. It's one of my favourites, utterly beautiful, very calming and a piece I loved to sing back in the day. I thought it appropriate for your blue eyed boy. The clip isn't the prettiest, but you can read the words as the song progresses. Hope this works ....




    Much love XXX
     
  14. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    Thank you so very much. I mean, in case things change … dear oh dear. That is a lovely lovely piece of music, thank you so much. You are in my thoughts and prayers too. With love and best, Kindred, Geraldinexxx
     
  15. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    #1855 kindred, Jun 8, 2019
    Last edited by a moderator: Jun 8, 2019
    Today, as I arrived, old songs were playing on the radio and the Queen's birthday parade was on the telly.
    Keith indicated he could see me with a nod. Grateful for anything, me.
    All that royal pomp and here we are in a nursing home. Could our lives be more different? I guess our job is to help the residents to feel like royalty for a few minutes and the staff here are brilliant at that.
    I have been honoured, years ago, at a reception at the House of Lords for taking part in early education preparation for Sure Start. Goodness me, the hope and optimism around that time! There's still hope today but in smaller ways, I think, as long as people are kind to each other.
    Keith's soon asleep after whispering to me: That's that problem solved, then.#
    I read somewhere that we are who we pretend to be. I don't know who said it but I like that,because in that case I really am the most positive person on this planet!
    love and thanks, guys, you see me through. Geraldinexxxx
     
  16. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    476
    Hi @kindred - glad you liked the choral piece too.

    I really enjoyed Trooping the Colour this morning on TV - I always do. Daughter came for lunch then we went to visit Mum and take her to the church garden fete, just across the road from the CH. It was windy and threatening rain, but we took a chance and it was ok. I think all these appearances by the Queen recently have gone to Mum's head. She waved royally and said hello to every one and blew kisses to those who spoke to her! We petted donkeys and snakes (Mum loves snakes and is often pictured wrapped up in one when they visit the CH) however the snakes and lizards were a bit incontinent .... or perhaps a bit nervous? Lots of children had to be cleaned up after holding them, so we kept a safe distance and just stroked them!!! We polished off a large pot of tea and cake, and hijacked the accordionist who serenaded us with Que sera sera and ( when he found our where Mum was born) Maybe it's because I'm a Londoner. She sang all the words that she remembered and covered herself and me with tea and cake crumbs. A good time was had by all and hopefully she enjoyed herself and will sleep well tonight!

    I think your comment about being who you pretend to be rings true. I always approach a tricky meeting or negotiation, dressed well, make up intact etc .... if I feel powerful ... then I am. It reminds me of the King and I song:

    Whenever I feel afraid I hold my head erect
    And whistle a happy tune So no one will suspect
    I'm afraid.
    While shivering in my shoes I strike a careless pose
    And whistle a happy tune And no one ever knows
    I'm afraid.
    The result of this deception Is very strange to tell
    For when I fool the people I fear I fool myself as well!
    I whistle a happy tune And ev'ry single time
    The happiness in the tune Convinces me that I'm not afraid.
    Make believe you're brave
    And the trick will take you far.
    You may be as brave
    As you make believe you are

    We are all trying so hard to be brave ....

    Love to you both XXX


     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Dearest Geraldine, I have been following from afar. I am so sorry about the thoughtless of the social worker.
    You have been and still are so brave, I think we all play a role, perhaps we should all get Oscars, even if only to bonk well meaning but ignorant people with.
    I think my own mini crisis is behind so I will post more I hope.
    I looked at recent posts as I do and fell asleep after a few so read but did not post.
    You and Keith are in my thoughts and prayer. With Love, Alice
     
  18. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    116
    Hi Geraldine,
    I hope that all is well with you and Keith, and that you are able to enjoy spending time in the home as we haven't heard from you for a while and hoping that everything is ok and you have just been busy X
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,176
    Annie, thank you and all of you for your wondrous messages of support. I was hoping for better news to give but the truth to tell my beloved blue eyes has, as the doctor predicted, lost a lot of communication functioning as a result of the mystery illness. At the moment, all I can do is hold his hand and I doubt he registers I am there. But who knows, tomorrow may be different. Each evening I take mywedding ring off and then slowly put it back on again as I can remember how it felt when he slipped it on my finger.
    Life at the home continues well, it was the new therapy dog today and this is going well, and it was the gardening club yesterday.
    Onwards and I will report over the weekend. Thank you a million all of you. Thank you. Back soon. with love as ever, Geraldine, Kindred.xxxxx
     
  20. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    476
    Hello our lovely @kindred - how I wish I could give you a great big hug .... but a virtual one will have to do, so consider yourself hugged!

    I am so sorry that the effects of the virus are still taking their toll on Keith - but what I have learned from the couple of years Mum has been in care, is that the slightest thing (fall or illness) can knock the stuffing right out of residents and it takes a very, very, long, slow haul for them to pull back to something approaching where they were before disaster struck.
    Only this morning I was visiting Mum and there is a lady on her floor of 104! Poor thing was so terribly ill a few weeks ago, she was on end of life care, morphine and the carers thought her days were numbered. Today her daughter pushed her into the dining room, she was sitting up, looking well, talking a little and about to eat some porridge. The comeback kid!!

    I love the fact that you replace your wedding ring, remembering when it was first put on. Mine has never left my finger since it was first put on (just the same as my Mum's wedding ring). Mine is engraved inside, and I love the fact that until it comes off, only my husband and I know.

    Much love, take care and be gentle with yourself. Love to Keith too.

    XXXXX
     

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