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You are not a Butlins red coat

Discussion in 'I have a partner with dementia' started by Bee.quilt, Oct 12, 2019.

  1. Bee.quilt

    Bee.quilt Registered User

    Dec 29, 2017
    79
    Words from memory clinic CPN. But here I am with an unoccupied, bored and dozing OH, day after day. His youthful interests were sport and photography, both beyond his capability now. His friends and brothers are dead, ill or melted away. He has never joined me and grandchildren in table games, jigsaws, quizzes, art lessons or craft workshops. He can’t concentrate on books and dismisses daily papers as ‘already read these. ‘ Social outings are rejected outright. His inertia is catching though I have a dozen things I’m eager to get on with. How can I help this once vigorous man to interact with the only life left to him? The medical answer seem to be to accept this as the disease. Am I wrong to fight this on his behalf? I feel so useless. Our close family are loving supporters, but are not here through the hours of apathy. For the first time ever I am unable to help. I just need to say all this to people who understand what I mean. Thank you those who read this and best wishes in your own journey. In sadness Bee. Xx
    ,
     
  2. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    177
    Male
    South Northwest
    In the early stages, if we shovel fast enough, we can stop dementia's shifting sands from smothering our loved ones completely. But we can't stop the Sahara for long if it decides it's coming our way, no matter how much help we get. The surrounding dunes just get higher and higher until we live in their constant shadow.

    Like an ancient, abandoned civilization, the marvels of the past slowly blur, crumble and are buried under the sand. Eventually, all we can do is build sandcastles with what's left. It's tragic, but there can still be a bleak kind of beauty in the new, unfamiliar wilderness.

    My Mum likes anything red. I collect red lids from peanut butter or jam, red-themed cuttings from magazines, red string or stickle bricks or... whatever crosses our path. Sometimes it makes me cry to see her so happy with so little as she fiddles with her treasures or squirrels them away in her hidey holes. Sometime she cries too and I think she might have poked her head above the sand for long enough to get a glimpse of her circumstances. And sometimes I wonder if it wouldn't have been much, much kinder if I'd shovelled in the opposite direction to try and accelerate this dreadful limbo.

    Here's to shovelers everywhere. More power to your elbow.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
    I'm sorry to hear that things are so hard for you both. Would your husband consider going to a day centre? If so it would give him some company and give you a little time to yourself. Perhaps there might be some Dementia Cafes or an activity like Singing fir the Brain might be available. These are good activities to do together. I know it can be hard to persuade someone to go to something like this but perhaps worth a try. Just a thought.

    You might find something in your local area here -

    https://www.alzheimers.org.uk/find-support-near-you
     
  4. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    70
    I have similar issues, except my mother actually wants to do things, see life, be entertained but the vascular dementia means she can’t engage or concentrate on very much (the occasional quiz show in the afternoon gains her attention at a superficial level but not for long) and the macular degeneration means she can’t see to do much anyway. I spend all of my time trying to make her life better, more bearable. It is my mission and I judge myself on my success or failure. I can do very little, however, to alleviate the boredom she feels. At this time of year, the boredom leads to depression. Added to everything else, it is difficult to manage and I feel like I am failing. So, no, not a Butlin’s Red Coat but I feel every day that I am letting her down when she wants what, to us, is very little - a bit of diversion and engagement - and I can not provide it. Whilst tiny in stature she is a very tough and physically strong little dynamo of a 92 yo so I fear we have many more years of this to come.
     
  5. Mojosho

    Mojosho Registered User

    Sep 13, 2019
    23
    Hello! This is the best description I've read of caring forsomeone with dementia. Thank you for taking the time to post it. My OH was a college lecturer in electronics and sits in his chair touching his treasures which are bits of plastic fallen off his models boats. On a good day he takes his vintage camera apart and puts it back together. He can't even turn on the t.v. now. It's the saddest feeling I can imagine but I have to find some joy because I'm forgetting how to smile. I shall think of a dear lady who loves the colour red. It will help.
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    Oh Gosh! Yes - I am with you all on this.

    My OH is very similar - but he is relatively happy at the moment. I am incredibly BORED, with life with him.

    I stuck my head over the sand dunes yesterday when his brother visited and took us out for a meal - I had interesting conversation with him and his wife ( OH did not take part) and a lovely 'normal' time. They left and I sank into a miserable evening, as the quizzes on TV ( all he wants to 'watch' and snooze with) grated on me, and I counted the hours as they passed without him speaking at all.

    By 10.30pm I had not had a word for well over 5 hours, and I was seethingly resentful.

    I am OK today, as I sink back into what my life has become.

    He enjoyed seeing his brother ( who lives 50% in Brazil and cannot call often) on a level, but not really interested.

    What an awful thing it is, to see people we love slipping into the inertia of dementia, no matter how hard we try to keep them well, and happy. I play simple board games with him - but although I still love him, these are BORED games for me, that go on for hours. and that's that.

    What an awful disease this is, as it drags along its victims and their families.
     
  7. Mojosho

    Mojosho Registered User

    Sep 13, 2019
    23
    It's so much harder when it's your OH. I'm with my husband 24/7. I don't begrudge it but I'm longing for conversation before I forget how! I've looked after him for 31 years with heart failure but this is a cruel blow. I open my mouth to say something then shut it again because he just looks at me like I'm from another planet. He does nothing when awake other than stare at the t.v. Most nights he goes to bed before 7 p.m. and sleeps for about 15 hours. I'm sad to say I'm relieved. It makes the awake times more bearable. It so helps communicating with people who understand.
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    Very similar situation - only my OH does not go to bed til 2am and then is up and down all night long! I knew exactly what you mean by starting to say something and then closing ones mouth, because you know it is a complete waste of time.
    My OH has set phrases that he says - and I am so terribly fed up of them - when I should be glad he speaks at all, in any form.

    My daughter mentioned last week, that when I am with her, it takes me about an hour to get into normal 'conversation' mode again.....

    Oh well, another day ahead...........
     
  9. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    We all seem to be rowing the same model of boat! Mary Joan.
    I do not feel there is much we can do except choose the colour.
    Mine no longer is able to go to the day centre, music is the current time filler especial on TV. Other things need too much concentration for him.

    It the morning carer is one who has been before I plan to walk to the post box, first time in eight weeks as H cannot be left.
    I have to resort to finding things that interest me, sometimes with headphones, yours being up till 2.00 must be a real issue to contend with.
    I do have a few email friends. I have made 'friends' with the motley of Carers, finding out about their lives. Sometimes this is the only adult conversation I I get.
    I avoid current affairs, they are too stress making at the moment but I just read the headlines at the end of the day.
    I have ordered books, but have little time to get lost in one. I hope as Carers get more used to where things are I might go in a room and read.
    I love the idea of building sand castles. Too true. The sand now overwhelms.
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,417

    Well described, x
     
  11. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    I just hope our boat is not called 'Titanic' !!!!!!
     
  12. Mojosho

    Mojosho Registered User

    Sep 13, 2019
    23
    I find it so strange to get comfort from others stories but I do! I understand why they tell you about these talking groups over coffee. Lovely! But they miss the point. I can't leave him alone and am unsure about others coping and having to pick up the pieces. So it's one day at I time. My OH has heart failure and pacemaker battery running out of life so no one knows what will fail first.
     
  13. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    98
    Yes the analogy of shifting sand is a good one, and then we turn round and realise that the tide is coming in and there’s no way off the beach! Another analogy I read on here said it was like having a geriatric toddler, which describes my O H perfectly because now he’s started chattering all day, like a 3 year old would,mostly nonsense really, which is very amusing from a 3 year old but pretty wearing from a 73 year old!!
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    This morning I went to have the flu jab at 8 o’clock, OH still fast asleep in bed. It’s a short walk and there’s a coffee shop on the route so I decided to have a coffee and a croissant for breakfast on my way home. The croissant was fresh and warm and delicious. A family came in with a toddler and a baby. The toddler toddled up to me and grinned and I smiled back and thought, I’ve got one like you at home and just welled up. The only difference is that I couldn’t have left the toddler in bed but neither can some of us. I was back fairly soon and he was still in bed of course, and it’s going to be a late brunch for him again. From being a clever active person to a shambling memory less man with no interests, no ability to read anything other than captions and headlines, sleeping on and off all the time is heartbreaking and soul destroying. I have accepted this and only do what he will willingly do, and because he doesn’t want to do anything, he does nothing.
     
  15. Mojosho

    Mojosho Registered User

    Sep 13, 2019
    23
    I'm glad I'm not alone bringing up a geriatric toddler! What shocked me is how he takes the hand of his carers and follows them to bathroom or bedroom like a trusting child. My son just left after a visit and my OH said absolutely nothing. We used to laugh at all the funny incidents but it's gone beyond that now. I'm just so tired! I still but two Saturday newspapers but he just looks at the pictures for 5 minutes and that's it. He used to spend hours reading them. And this has developed in just a few months. I have help with house work so that when he is asleep I can use that time to read or do there things I enjoy.
     
  16. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    #16 Grahamstown, Oct 12, 2019
    Last edited: Oct 12, 2019
    You are so not alone, but we would be if it were not for TP, where we can get moral support from fellow carers. Your description is so similar to mine. My husband is so dependent on me now that I find it quite frightening, and very childlike, as I recognised in the toddler. Lately he has been asking my permission to go to bed, which happens regularly, almost as if he realises that he spends far too much time dozing or sleeping. I find that so sad, as if his free will, such as it is, has gone. I have tried hard to leave him some autonomy because he has lost so much but it is futile because he is incapable of making decisions.

    I realise that I have used toddler to describe him now when about a year ago it was four or five year old child, he has definitely regressed again. Sigh...
     
  17. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    473
    Female
    Basingstoke, Hampshire
    That's a good description. I mentioned the other day in another post that I sometimes feel that I'd like to pick him up and put him in his playpen.
    We've never bought newspapers and only relied on the TV news programs. But now that's difficult for me as he talks all the way through the news, but not about the news. He just comments on what the newsreaders are wearing, how short their skirts are or how low their tops are. If I'm not in the room when the news is on, he comes and tells me his version which is usually nothing to do with the real world.
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,141
    it’s like King Canute & the tide - inevitable!
    I find classical music on the radio is a great comfort; Dad used to enjoy all music but now classical is the balm for both our souls.

    my vibrant active father has disappeared the exhaustion caused by dementia means I get odd words & try & piece some meaning to them. Most times I just give him a cuddle - he finds holding hands now too much at times.

    Dad was happy watching & commenting on things. So a room with views of trees provides interest & colour. His love of the outdoors is now done through glass.

    my advice to you is let your husband dictate activities- the mental fatigue experienced is incomprehensible to us.
    I buy flowers & plants & hope that the joy & colour my Dad used to get from this is still locked in there somewhere

    it is a solitary path those with dementia walk with us stumbling along mostly behind them - trying to be beside our loved ones as they progress forward.

    a disease so unique & individual to each person that experience & advice can only take us so far. Whatever you do you do it with love & best interests at heart. It’s all we can do ... so I’m hear stumbling along beside you with hands outstretched hoping that it will stop me from falling or another’s hand will momentarily grasp mine & steady me for a moment in time - enable me to continue
     
  19. Mojosho

    Mojosho Registered User

    Sep 13, 2019
    23
    Well described.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,141
    Thank you
    I find that my conversational skills are limited but my one finger typing skills are dramatically improving as TP is a main outlet for thought & emotions!
     

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