Dementia’s journey

Discussion in 'I have a partner with dementia' started by Dutchman, Aug 31, 2019.

  1. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    868
    Male
    Newcastle
    Christmas just confused and distressed my wife so we did not have one last year: no cards, no tree or decorations (we never did really), no family and no 'special' meal. We took the dog to the beach instead. This year the tree in her care home is going up on 1 December and there'll be efforts made to make it a cheery time for the residents. I'm looking forward to joining my new family (the staff and residents) on the day.
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    I want to air my darkest thought. There is problem of how little my wife is eating at the home. I left and returned later with a variety of small sandwiches and some grapes. Still no interest in eating. After much patience with her refusal I went home.

    I’m wondering if she’s doing this on purpose because she wants to die. Also I wonder if she sees it as a way of making me worry to get back at me for placing her in the home. This whole thing messes with my mind and it certainly achieves the effect of making me worry constantly and/or see things rationally. If she continues like this the next stop will be hospital.
     
  3. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    876
    It is not unusual for appetite to change with dementia.I think the 'hungry'signal gets switched off.I'm pretty sure your wife is neither trying to bow outnor punish you.It's dementia,nothing more,nothing less
     
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    Many thanks for that reassurance . I just wished there was one food she really liked. I could go to the supermarket tomorrow and buy a variety of stuff including a good cake.
     
  5. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    876
    None of this is your fault.Your wife is ill.
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,880
    Is it possible that the savoury food doesn’t taste the same now because of dementia.
    Dads sweet tooth is the main way of getting him to eat . Ice cream, puddings all soft & easy to swallow. Try those .
     
  7. Pete1

    Pete1 Registered User

    Jul 16, 2019
    242
    Male
    Good Morning @Dutchman, if you are concerned about your wife not eating and associated weight loss, please do mention this to the Care Home Manager and they should start to actively monitor your wife e.g. start recording her weight, what she is eating, and also engage a dietitian to review her (who may potentially recommend supplement drinks). Stay strong and look after yourself.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    Hello @Dutchman

    I have heard many people who refuse food like jelly, or something sweet and refreshing. Jelly is a good way to provide fluids too.

    My husband used to like a soft pear.

    I really doubt your wife is refusing food on purpose. I know myself when I`m not feeling well, food is the last thing I want.
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    Phoned the home and she has eaten a bit more.
    I go as often as I can but some days I just don’t have the will to go. My feeling that I’m abandoning her is strong but I’ve been advised that it’s ok, that it’s best to go when you feel less miserable so that feeling doesn’t transfer to my wife.

    It’s heart breaking to see her , she looks so lost and vacant, she looks unhappy either sitting in the lounge or wandering the corridor. And because we’re not together anymore there’s this feeling of distance that’s becoming apparent.
     
  10. marshal

    marshal Registered User

    Sep 6, 2017
    58
    Female
    denton
    Sorry to hear your wife's appetite is changed so much that it is causing you more worry. This illness is so unpredictable and does not make any sense ,we cannot find the reasons most of the time for the different things that happen to our LO .We can only try to help them with our patience , understanding and love. If they are not able to accept our attempts we can only try again .I have the sadness in my heart as you do. I see my man wandering and lost , I so want the hubby before dementia back, an impossible dream. As for appetite my man has gone completely the other way , he seems to be eating for England. It is as though the message from his stomach to his brain saying he has eaten has been cut, so it is like trying to fill a bottomless pit.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,880
    I cannot fully appreciate your sadness & feelings, but do empathise.

    my Granny used to always say to me “life is for the living “

    I try to remember that but it’s very difficult at times especially as dementia takes all that was once familiar in our loved ones.its hard to then go out & live a normal life.
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    I’m at a counselling session this morning @ 10.45. Then I’ll go for a walk. Till then I’ve gone back to my nice warm bed . Is that wrong, I don’t know, but at the moment I don’t care as I’m doing what a lot of people say and being kind to myself.

    Perhaps over time I’ll get out of the habit and involve myself in something when some motivation is back.

    who can ever judge when our whole lives have been turned up side down.
     
  13. kindred

    kindred Registered User

    Apr 8, 2018
    2,280
    No one, Dutchman, but I expect people do judge us! Ignore worries about that. Bed is good.
    warmest, Kindred.
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    Thanks for endorsement. Counselling went well and we’re going to try different methods till one resonates with me. Thanks once again for continued support. When people like us have been through or are going through these emotions the only one that really counts is kindness for one another.
     
  15. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,912
    Female
    Dundee
    I’m glad your counselling session went well @Dutchman. That’s a positive start for you to build on.
     
  16. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    524
    Female
    High Peak
    Dementia definitely messes with appetites! Some people eat more, some change their tastes, often wanting more sweet things but I think the majority just go off eating altogether.

    It was certainly an issue with my mum and I thought it was due to the CH not offering appetising choices. But I discussed it at length with mum and she said she was just no longer interested in food and didn't seem to get hungry. I spent many hours trying to come up with tempting ideas, things she used to love, new things that might take her fancy. She was even happy to talk about food - always wanted to know what I was having and liked to look at recipe pictures in magazines, though her reaction was always to pull her face and say whatever it was looked ghastly. Her standard response when offered anything was, 'I'm just not hungry.'

    Obviously people who are moving around less (and using less calories) don't need as much to eat but it is very worrying when you see the weight dropping off and nothing seems to tempt them.

    But please don't think this is a deliberate act by your wife or that she is refusing food on purpose. Her dementia means she is just not capable of that sort of planning. I think the part of the brain that controls appetite often goes quite early in dementia.

    Take care - thinking of you...
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    It’s funny isn’t it that when you believe you have your emotions under control something just knocks you back again .

    This time it’s my wife’s jumpers. They want some more at the home because she gets cold. So I come home and open a drawer and there they are and I start to sort out some nice ones and then it hits me me. Some of them still have her smell on them and softness on my face I feel lm still holding her and saying how much I love you.

    If by some miracle I could give my life for hers and she could be normal again I’d do it in a heartbeat.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    I’m going to the home later to help get Bridget ready for tea and bed.

    For some reason or other I’m upset today as I imagine her in the home and imagine her tremendously unhappy. The Admiral Nurse says Bridget won’t even remember your visits and I know when I’m there she’s always looking into the distance and not really with me.

    even as a carer at a distance messes with my mind and I don’t think I’ll ever get over the thought that I’m just not good enough at this changed relationship. Although she isn’t the wife I married I still love her so much.

    We can always cry why me but that just increases our misery. Someone even said are you going to look for someone else now. No one could could take her place , no one could occupy that space in my heart.
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,280
    Bridget may not be unhappy at all, Dutchman. I volunteer in the nursing home where Keith died and residents are rarely the same with their families as they are when their families have gone and they can relax and be more at ease. Of course no one else could take her place and that's awful that you were asked if you are going to look for someone else now.
    I tell myself that keith lived life to the full at a time when you could live life to the full (he would have hated all the difficulties and restrictions we live with today), and his brain wore out. That kind of gives me some comfort, well a bit anyway.
    all sympathy and fellow feeling. Kindred.
     
  20. Dutchman

    Dutchman Registered User

    May 26, 2017
    438
    Male
    Devon
    Rope
    People say to me all sorts of things that hurt and, if they really knew what grief we were going through, probably realise that what they say is is insensitive and just plain wrong. But people not used to talking to grieving people, not used to the trauma of our emotions, make these mistakes.

    You are so kind Kindred, taking the trouble to help me with my struggles. As you know some days are easier than others to manage. Well today has been not good. I’m finding lately that her personal belongings with her association to them are twisting the knife. Her handbags, scarves, gloves, shoes (she has so many shoes). I feel like leaving everything untouched until that awful time when she dies. I’m sure you went through hell (probably still are) with similar feelings for your beloved Keith.

    Bless you for your support

    Peter (Dutchman)
     

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