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Feeling hopeless and guilty

Discussion in 'I have a partner with dementia' started by manchester87, Aug 30, 2015.

  1. manchester87

    manchester87 Registered User

    Feb 19, 2013
    3
    I'm new to posting on here. My husband was diagnosed with Alzheimer's 3 years ago.
    I normally feel positive and try to just get on with life as it is and accept that our lives are quite different now from how they used to be and from how we imagined they would be.
    Just recently I am struggling to remain positive, I feel everything is too much and I'm fed up with the responsibility. If I don't do anything or suggest anything my husband just sits and watches the news or stares into space. Nothing is easy anymore if I try and pop to the shops or the library he always wants to come and then instead of a quick trip it takes forever. Walking round I have to watch him constantly or I find him wandering off and following a stranger round the shop and when I ask him he says, 'I thought it was you'.
    I do have friends and family that I see but I feel guilty leaving him as I know he will just sit there not doing anything. I don't want to feel guilty for still having a life and going out and enjoying myself.
    I've arranged a short break away for both of us to give him a change of scene but now he says he's not looking forward to it as everything will be strange to him.
    Sorry to go on and sound so miserable but how do people cope with life like this.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,746
    Female
    London
    Could you get him into a day centre or arrange sitting service? There is so much stimulation they could give him in a day centre, plus social interaction and a hot meal. OH loves going to his. They do all kinds of projects, arts and crafts, gardening, armchair exercise, singing and dancing, jigsaws, bingo... The list goes on. He goes on walks with the sitter on weekends plus he's just been enrolled for the Namaste project which is for people with severe dementia, to stimulate their senses.
     
  3. patsy56

    patsy56 Registered User

    Jan 14, 2015
    839
    Fife Scotland
    welcome to TP Manchester and can I say I sympathise. OH has Parkinson's and yes just watches the news and programmes we have watched before. As yet not too bad I can get out and about, but I have to say when I will be home, almost to the minute, which I can do.

    It is mother I can't leave in shops, she is constantly picking up and looking, or saying trolley squiffy. I would love to take her shopping but the strain.

    I might not have the answers but someone here will
     
  4. Bree

    Bree Registered User

    Oct 16, 2013
    241
    I can quite understand your feelings. Contact your local agencies that deal with dementia patients, they can give you some positive help and advice. There are volunteers who will sit with your husband as well.

    Can your family help out a little ? Just an hour or two without the guilt or worry is what you need, time for yourself. If your OH watches TV, at least his mind is occupied, better that than staring into space.

    We know exactly how you feel, it's hard and at times distressing, but take heart, there is help out there.
     
  5. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Manchester, I think we can all sympathise with you and you shouldn't feel guilty. None of us, carers or suffers, asked to be in this position and it's tough. Have you had a carers assessment? You may well be entitled to regular respite even if it's just a few hours each week to do your own thing, and/or a placement in day care for your husband which would give you a break. Worth looking into all available options. x


    Sent from my iPad using Talking Point
     
  6. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    472
    North West
    Hopeless and guilty

    Hi Manchester. Feel exactly the same on this dull, dreary Sunday. Call myself the "Entertainment Committee". Making suggestions to avoid the sitting in chair staring. (Gardening, Bridge game, Wii, etc.)Think it's the ex-teacher in me that demands self-improvement for myself and OH., I like to dash about the shops/library on my own. Only ever took the children when they needed shoes etc. My OH can be left, sleeps quite a lot and does not need all day care at present.

    Think it has been said on here that weekends are the worst. Problem is that I have stopped inviting family and friends. First, because all the work of entertaining falls to me (OH used to keep glasses topped up) and secondly because I feel we are boring now. Have resolved to make more effort now the holiday season is nearly over.

    We're not hopeless or guilty just human.
     
  7. truth24

    truth24 Registered User

    Oct 13, 2013
    5,725
    North Somerset
    Welcome Manchester87. Hope you find the support and comfort you need. We are all here for you.
     
  8. manchester87

    manchester87 Registered User

    Feb 19, 2013
    3
    Thank you all, for your support and ideas. I felt very alone when I made my original post as although I have family and friends I sometimes feel that they don't get what it's really like having a partner with Alzheimer's. But on here are people going through the same thing and they do really understand.

    My son is going to get details of a dementia cafe he has heard of so that will be my first step to finding what else is available in my area.

    Thank you
     
  9. Bree

    Bree Registered User

    Oct 16, 2013
    241
    Good luck, the cafe's are usually very well run and very helpful. I'm sure they will have other suggestions to give you help.
     
  10. elizabeth hc

    elizabeth hc Registered User

    Oct 31, 2012
    49
    I am the same. O.H thinks I can be the activities co-or donator! Wherever I go he tags along and it takes ages. I am also on pins the whole time invade he kicks of which is so embarrasing
     
  11. marmarlade

    marmarlade Registered User

    Jan 26, 2015
    183
    a little enjoyment

    hubby has settled in the care home now and we can now take him out without him saying hes not staying there,i can now take him out in his wheelchair, and as it is left in his room the first thing we get when we go is are we going out? couldnt take him out over the holiday as of the rain so took him for his first car ride since he went in, keeping fingers crossed he wouldnt think he was going home but no he went back ok,being able to do small things like this is so rewarding after all the heartache that goes with putting him into care and getting him settled.I can see the difference in him as at home he didnt talk just sat in the chair,NOW he talks to us and anyone who is within range.Putting him into care has made him a lot more interested in whats going on.so to anyone who is thinking of care home for your loved one , after a while they are better off as they always have some one to talk to and some thing to do. dont know if any of you really wanted to know all this, but things do get better
     
  12. truth24

    truth24 Registered User

    Oct 13, 2013
    5,725
    North Somerset
    So pleased to read this, marmalade. It does help when they are contented.
     
  13. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    My hubby is very lonely and bored, he does nothing to help me in the home, he is going into a care home soon so l can have 2wks respite, will be interesting to see if he is happier, he doesn't like daycare or carer's,
     
  14. Caz60

    Caz60 Registered User

    Jul 24, 2014
    253
    Lancashire
    Can't win .!!

    Hi Everyone ,my hubby was having a good day today so we arranged to go shopping and have a bite to eat in St Anne's square near Blackpool .I also asked Dad to come with us (he is 90) but all "there " .We had a lovely time it was sunny and really pleasant ,my hubby was getting a bit too hot so we made our way to a Well known Home furnishing store .I needed a rug so I left two men downstairs ,it was easier .When I came down with my intended purchase my hubby was stood looking up waiting for me and dad looked all worried.Our good day changed rapid when my dad announced he had a sudden release. of (number2). After being escorted to a large disabled toilet I had to wash his trousers in the sink and try and get him decent to get in the car ,.We just had to laugh afterwards,what do they say xxxx for luck .xx
     

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