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Dementia and Despair

Discussion in 'I care for a person with dementia' started by mzoo, Dec 7, 2017 at 2:05 AM.

  1. mzoo

    mzoo Registered User

    May 14, 2017
    I'm sorry if this is insensitive, but I don't mean on the part of the PWD.

    My MIL seems happy enough. There are the usual morning grumbles, of course... e.g. "Why are there so many pills????", "my room is the coldest in the house!!!", "I don't feel like receiving visitors today" (when her nurse is coming to change her bandage), etc...

    Otherwise, she seems fairly content. There are always complaints through the day, too, about food being too much, or not enough, or it's too cloudy, or it's too sunny, and so on.

    But hour to hour, day to day, aside from these constant quibbles, she seems... dare I say it? Can I be honest about this? Cheerful. Happy to have us take care of her, make her meals, so her laundry, clean the house, entertain her.... The only laughter I've heard in this house for months is from her.

    The despair has basically overtaken my husband and myself, however. I go to sleep crying, and I'm sure my husband does, too. We both often go to bed angry.

    I don't know what to do. We have a couple of PSWs once a week. One has been great, one very much not so great. So we made sure the latter was replaced.

    I know this sounds incredibly petty and pathetic, but I'm finding myself envious of her joy and oblivion. I'd love a bit of it at this Christmas, myself. I tried my best to make the house festive for Christmas - set up the trees and decorations inside and outside. Only to be told this morning that she'd made the wreath and put it up herself! And wasn't it beautiful?

    I realize she can't remember a lot of things, but I'm wondering if a lot of the memory is selective (Is that fair? Is that possible?). Surely some part of her must know that she hasn't been outside the house in several months. She absolutely would be, if she'd be willing to strenghten her leg with exercises, but she's completely hostile and resistant to that (but that's a whole 'nother story and thread). Surely some part of her remembers everything that we've done - and do - for her.

    I know so many threads here are focused on making the PWD happy. And for good reason, I understand and appreciate that. But that's all we do, all the time. I guess it gets me back to an earlier thread I posted. What about the (sorry, won't swear) #$@##&*# caregivers? Or am I just being entirely selfish again? Is there a forum section for that? ;)
  2. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    There was...but it got so overloaded, the site crashed!! :p:p:D
  3. mzoo

    mzoo Registered User

    May 14, 2017
    LOL...thanks! :)
  4. Lawson58

    Lawson58 Registered User

    Aug 1, 2014
    Victoria, Australia
    #4 Lawson58, Dec 7, 2017 at 5:05 AM
    Last edited: Dec 7, 2017 at 5:15 AM
    I think it would be a fair thing to say that you spoke for many of us on TP and how can it be selfish to want a life for yourselves when everything you do is focused on a PWD?

    My husband is still functioning at quite a high level and it would be an understatement to say that he is obsessed with playing bridge. He is fine if it is something he wants to do, like get out for an afternoon playing bridge but he quite happily dumps everything else on me

    Recently he heard from his granddaughter for the first time in over a year (very dysfunctional family). He had heard that she was pregnant again and he heard from someone else that he had a new great grandson but not one of his offspring could be bothered to let him know. Past experience suggests that she is no doubt hoping that grandad will cave in and send her money for Christmas but he is incapable of doing that so decided he would like to send the children presents. I have no issue with that but he expected me to do it. Considering that she doesn't acknowledge my existence and has never said thank you for anything in the past, I refused to do it and insisted that OH should do it. All hell broke loose and now I am the worst person in the world. And of course, he was able to get himself to the shops and even wrapped the presents himself.

    I believe that he uses his illnesses to avoid doing anything except play bridge which I am now coming to hate with a vengeance. He is quite manipulative and hates it when I dig my toes in and refuse to do something that I know he can cope with.

    And yes I get angry and frustrated that I have to devote my time and energy to someone who isquite content to regard me as his personal slave.

    You have my sympathy but I have to admit that I am not sure how to dodge the bullets.
  5. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    Don't we all walk that fine line between making people happy and comfortable (probably not allowed to say that this is a feminine trait am I? and before the bullets fly that is a generalisation and many, many men perform this function better than I do!) and opening the door and throwing everyone out of the house. I tread this line every day for hours on end.
    Empathy and sympathy for the PWD by the bucket load but does mum manipulate me? Of course, she always did and continues even though she cannot remember the toast she had for breakfast ten minutes ago. Little evil niggles like the carer who comes to get her up commenting on a new photo in her bedroom of my brother (fourth visit in four years) and her last weekend: "Of course he is the one who really cares. I have always preferred him to her."

    Thank you very much mum and how would you cope if I stopped cooking, cleaning, endless washing, assisting you in and out of chairs, loos, cars, etc? Who would buy the oil for the heating to keep you warm, who would shop for your magazines, your sweets, do the bank transfers and cheques for all the activities I take you to?

    And oh her joy when her barbs strike home (I'd now make a decent poker player I think). Moan away Mzoo and I am with you all the way

  6. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    That forms part of the rollercoaster and unpredictability in parts of the illness from my experience of caring for dad. The moments even in his illness when he burst into song a few minutes after a verbal volley is something I remember now he has passed away that leaves a fond memory and cancels out some of the bad ones. Hopefully these more tranquil laughter times will be ones that you also will become fond of in memory of your mil even through the difficult memories
  7. mab

    mab Registered User

    Mar 6, 2010
    Living in there with you mzoo. It can hurt so much.
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    No, they really, really, dont remember/understand what you do for them. Yes, they really, really do think that they are doing everything themselves - or dont understand that it need doing. It seems impossible, but it is absolutely true.

    Does this help? Not a bit.
  9. jumbo

    jumbo Registered User

    Nov 20, 2017

    Hi there,
    It sounds as though you and your husband are being really fantastic giving your MIL so much care and attention. Our daughter does not care a toss about her poor Mum and we are lucky if we see her twice a year and receive a phone call about every six weeks! That is someone who is a cancer Consultant. I try my best to give my wife the care and attention that she deserves but it is very hard and I have to constantly remind me that their illness is not her fault. Having put up the Xmas tree on Sunday she asked me why I had put it up! What was it for? Her only source of joy is watching old TV programmes again and again! She loves to be in charge of the remote and flick from channel to channel. I know what you mean about crying yourself to sleep and each day I try to bounce back. I am new to this talking point and am finding it very rewarding to realise I am not the only person with a wife with such problems.Earlier this year we were overwhelmed with support when my wife had a cancer operation but mention dementia, here is a tablet get on with it! Keep up the good work with the MIL and just think where she would be without the two of you.
  10. mzoo

    mzoo Registered User

    May 14, 2017
    Thank you so much, all! And I suspect you're right, Canary. But, honestly, deep down, sometimes it seems like she *can* remember certain things. And that it's calculated, and conniving. And that she's (okay, I hate to say it - but I'm trying to be honest)... 'playing' us to her advantage. Especially against each other. For instance, a dig here and there, and a few more at me, and then the innnocent big smiles 'oh, no! I would never say that!' when her son's in the room. And vice versa. If my husband ever even gets cross at her - and he almost never does, but it's so exhausting, and he's not a freaking saint... Then it's 'oh! My son doesn't like me! It's not fair. I'm so glad I have another female here! You know what he's like!'. Rinse and repeat, etc... :(
  11. SnowWhite

    SnowWhite Registered User

    Nov 18, 2016
    Jumbo - it's amazing how some people can distance themselves from their ill family members but can work in the caring profession. Maybe the difference is they get paid for that.

    There's a young man in the next village who is autistic and he lives with a couple of carers. Both his parents are consultants in London where they live. They bought him a house up here and just moved him up with paid carers. All the parents do is pay the bills.
  12. mab

    mab Registered User

    Mar 6, 2010
    Exactly! It's trying to determine that dividing line between dementia and nasty character. And, working out that conundrum, we drive ourselves to distraction and desperation ...........!!
  13. SnowWhite

    SnowWhite Registered User

    Nov 18, 2016
    I felt despair this morning. I went to see my Mum (as I do every other day) having first dropped off my daughter in town and done my weekly shop. It was absolutely pouring so I had to run through rain quite a distance to get into the home. I was drenched. Then I paid Mums bill and sorted out a few things with the Manager.

    Mum wasn't very chatty and nothing was right for her. We didn't have much of a conversation and she can't remember where she is. She thinks she's been there months but it's only weeks. I couldn't persuade her to put her TV or radio on and she just sits there. She's not drinking enough and keeps getting UTIs.

    It's a lovely place. Her room is big and very warm and light and bright with huge windows and a nice view. The staff are lovely and very helpful. The food is great - today was Steak &Ale pie, potatoes and veg followed by semolina and jam. All homemade and there are other choices if you don't like these. Most days she likes it there but we get a day like this and I go home feeling so deflated but I know I can't make a single thing better for her. It takes me the rest of the day to drag myself back up again.

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