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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. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,925
    I know it’s difficult to read but please don’t go & visit Bridget in the late afternoon, sundowning occurs with dementia & you don’t need to experience this at the moment. You are going to visit your daughter at the weekend, so by not going in today will be a gentle natural introduction to a new routine. You have a busy day ahead of you, be kind to yourself.
    But some flowers & a vase while you are out- supermarkets do a range of cheap vases( don’t take in one from home - just trust me on this please) believe me your wife will be thrilled & they will brighten & make her room more personal.

    I still bring Dad items from home ( when my Mum will allow me to - she has dementia to & hoardes everything!) to personalise his room. Pictures ( the care home mount them on the wall), clothes which I buy a small / thin sharpie pen & write his name on all the labels, or care instructions other side. Cushions & throws from home & bedding. I went out & bought single bedding with lovely prints I knew my Dad would like. You can still spoil your loved one, I take in pastries, crisps, drinks & even frozen pasties for the kitchen to cook up for him as a treat! Your wife will still like putting on nice clothes & shoes, having new clothes will always bring pleasure.

    Pleased you went for a walk with a friend. It’s hard I know, my husband works away mostly - not the same I know, he’s worked away for over 20 years now; I spend most of my time on my own. I don’t like it, but it is my life & i have to find things to fill my time or I’m miserable. I have a couple of dogs, that gives me structure to my days. Also it’s lovely company. I guess I’m saying that loneliness can be felt by anyone in any situation.
    Be kind to yourself.
    (((hugs)))
     
  2. 70smand

    70smand Registered User

    Dec 4, 2011
    265
    Female
    Essex
    Dearest Kindred, Geraldine,
    I’m not sure where to write this but I took a break from reading tp for several months as I found it all too encompassing and I was eating, sleeping, breathing and reading dementia. I did not always comment but followed your posts daily.
    I’ve just come back today and caught up with finding out you have lost your beloved Keith. I am so terribly sorry as I loved following your care home visits right from the start and found it easy to imagine you both from your daily tales of visiting.
    I always felt there were so many similarities between yourselves and my mum and dad and wished Keith and my dad were in the same home because you would have made lovely friends. Also you made Keith’s care home sound such a wonderful place.
    My mum still visits dad daily, every afternoon, and he has deteriorated, but he’s cared for, and seems happy.
    It’s lovely that you are now volunteering at his home - you have so much to offer, and I’m pretty sure you have helped so many on here already with your words and kindness.
    I’ve shed more than a few tears whilst reading on here this morning, but I just couldn’t not say anything to you. My warmest wishes and lots of love to you, a true Kindred Spirit XXX
     
  3. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    495
    Hello @kindred - just saw that you had posted here and thought I would say 'hello' again and send you a few virtual hugs (( ))
    Much love
    XX
     
  4. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    Oh how lovely to hear from you, thank you with all heart. It would have been lovely to have your dad and Keith in the same place. I'm now, with uniform (yellow tea shirt) an official activities person (volunteer) and love it so much. I could not ask for a more suitable form of voluntary work. Obviously I miss Keith with every breath I take, and hope this work will honour his memory. So good to hear from you. with love and best, Geraldinexxx
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    Oh thank you Toony, it's so good to hear from you. I do tune in to TP regularly still as I regard folk on here as my friends ... with love and best, Geraldinexxx
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    Lovely to hear you on here. Life is about finding meaning isn't it. Your bravery and wider vision is heart warming.
    With love Alice
     
  7. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    Oh so right Alice.
    Mans search for meaning is a book I try to live by.
    Now Keith is dead, all I can ask of life is to give me opportunities to be useful.
    All my thoughts to you, too.
    With love and best,Geraldinexxx
     
  8. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    I feel when we realise how important the search is, it puts life into perspective, sorts the wheat from the chaff. If anything I feel it makes one more sensitive to feelings not less.
    I think I feel life is as if it is a serious a game but a game none the less.
    We should not take ourselves too seriously. Not that I am suggesting life itself is not.
    Hope this makes sense. Much love, Alice
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    Of course it does, bless you. I run a little church group each week and we discuss issues like this. I think I will take life is a game to them to discuss. We are all elderly ladies who have been through the mill as they say and our discussions are wonderful.
    many of the youngsters I work with so fear the random nature of life.
    With love and best, Geraldinexx
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,518
    You could offer the idea of a school! You could have fun with that! Xxx
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    One thing that's left is paperwork. Masses and masses of it. Just got a load today. I'm pretty organised but it flaws me often. But the other side of it is that it seems to help me keep the idea of Keith alive as a human being that needs to be administered like the rest of us ..
    People ask me what I will do/did with his ashes. This seems to matter to people. I did not have his ashes, we decided not to. Instead, the last time I cut his hair, I saved the cuttings in a beautiful little bad and this means the world to me.
    So there are some things left apart from his invisible presence and the beauty he brought to this house by his amazing photographs.
    Love to everyone, Kindred aka Geraldinexxxx
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    439
    Male
    Devon
    Thanks so much. Now the home have informed me that although they do their best my wife has slapped out in frustration and hit one of the staff. I think I have to be mindful that the home may well ask me to alternative arrangements. Mental health team ringing home on Monday to discuss issues. What can I do ? They can alter her meds but what else. I’m becoming an all consuming worry person
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,925
    That isn’t uncommon behaviour for dementia, the home should have a policy to deal with that. Care management plans should already have steps in place. It’s distressing to hear about, but I’ve witnessed “outbursts” from residents & how the staff manage them atDads home.
    It’s just it’s your wife, & the first time, which is so distressing. Please try not to worry
     
  14. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    DD is right, staff will have met this before many times. I have become expert in dodging hits, as all staff are. THis happens, Dutchman. Please get as much reassurance as you can from the staff, the mental health team and from us. I know how hard this is for you. All fellow feeling. KIndred.
     
  15. Dutchman

    Dutchman Registered User

    May 26, 2017
    439
    Male
    Devon
    I’m at my daughters now and the house is just waking up. I thought it would be better here but I’ve woken up very anxious of my whole future, and all the usual feeling in my body of loss, worry, grief and a sinking feeling about going back to my empty house tomorrow.

    I know I should enjoy their company but the situation ruins any good interaction I might have. All my conversation centres around the care home and the current problems. That’s all I can think of because that’s all my life is now. I’m lonely and to think that my life will be like this for evermore is too hard to contemplate .

    I know this sounds a bit like self pity but the feelings are so strong I can’t help it. Going out with today I know I’ll just be looking at all the happy couples and regret taking my wife’s company for granted, love is such a precious thing and I just thought it would always be there.

    I really believe I could have done more and even avoided the VD with my wife. Here’s the thing. While on holiday 4 years ago she sat quickly on our caravan bed and complained of breathlessness, she was breathing hard trying to get her breath back. Same thing happened the next day. Both times she recovered . Who knows if I’d had paid more attention, gone to a doctor, had it checked out it could have been two mini strokes. Could it all have avoided? Would I have a normal wife now?

    Nothing is shifting for the better and I quite believe I’m heading for a breakdown. Anyway, I just had to get all that out as I feel so wretched this morning.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,784
    Female
    South coast
    Of course you couldnt have prevented the dementia @Dutchman . All this talk about changing your lifestyle to prevent dementia is (in my own opinion) total hogswash. It takes more than a couple of TIAs to get dementia and by the time dementia is diagnosed the disease has been romping away for years.

    I think fears are always worse in the mornings and everything seems so bleak them. Try and get involved in your family and do some nice things.
    xx
     
  17. nestle

    nestle Registered User

    Jul 22, 2016
    66
    Female
    Southwest but Yorkie by birth
    Think Canary right, my Partner with LBD was a sportsman, always active always participating, didn't smoke or drink to excess. Be patient and gentle with yourself Dutchman, its a hard road we travel and those who are not in our Club don't understand. I find trying to enjoy the moment helpful and enjoy the small things in life . I can appreciate you are overwhelmed by everything but I do hope you can relax a little in the arms of your family. onwards we must go , keep going all will be well it takes time.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    439
    Male
    Devon
    I must try and enjoy each moment and not look too far into the future. I know all this and really appreciate your advice.
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,925
    Stop! You need to be kinder to yourself. Ask your daughter how things are? Ask your grandchildren? Listen to them, stop talking & listen.
    This weekend you are a Dad & Grandad.
    So it’s not been a great start, but it’s a new day. A lovely new day, make a nice memory today for you, your daughter, your grandchildren- put them first today.
    It seems almost impossible with what you feel but just imagine it & a positive experience/ memory. Now get up & hug your daughter, grandchildren & I promise you that a little lightness will come. We all need human contact, I’m a hugger,; but it’s a fundamental part of life, & releases chemicals in the brain that make us feel good!
    Now go hug!
     
  20. Dutchman

    Dutchman Registered User

    May 26, 2017
    439
    Male
    Devon
    What’s weird is that when you want to be kinder to yourself the actual act of trying seems at the moment to be a betrayal. Why should I want, more then anything, to feel better when my wife is away from me and stuck in care home.

    Emotions are so very complicated because they are emotions and these I’m feeling now are the worse I’ve had in my whole life.
     

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