Dementia’s journey

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

  1. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    I’m constantly reminded that I should be kind to myself. But the only thing that I really get satisfaction from is being kind to my wife when I get the chance to help her at the home. That’s what love is for me, putting aside my own wants for her.

    At the moment any activity I do away from her makes me feel that I’m being selfish and then I feel real guilt. I know I have make a life for myself but it’s so very hard when as a couple we did everything together. God, how long does take to sort all this mess out?
     
  2. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    353
    Female
    South East
    That is a very normal response , I too get such a good feeling for doing things for others , I still must take care of myself though to be able to care for others. You wouldn’t expect a car to run if it’s tank was empty, we are similar. It might be too early to start thinking about making a life , at the moment you need to just get yourself in a stronger position. Have you got any pets or people you can go to for support ? I think you should talk to your daughter about how you really feel and be honest with her . She will want to help .
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    The real reasons I’m upset is the awful feeling that she went into the home purely because I couldn’t take her behaviour any more and I couldn’t cope. There was no professional person in the room at the time giving me advice, just me and a hired carer. Now she’s stuck there.
    Now I’m alone and I never appreciated how alone that would mean. I never imagined her never coming back to the house.
     
  4. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    353
    Female
    South East
    I can only try to understand how hard that is . What would you do differently if you could ? You say purely because of her behaviour and you couldn’t cope , they aren’t trivial reasons and you made that decision I’m guessing not to benefit yourself but to help your wife as you thought it was the best solution for her . Your life has changed hugely and I think you need time and support to adjust .
     
  5. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,478
    Hi Dutchman, I know how you feel, I have been on my own a year next month some days are good some days are awful. But today I have decided to join the gym, I have a very good friend and she goes 3 times a week and I really need to get out of the house. I was 70 last Thursday so have had a few good days, but I can't keep relying on family(they are always busy anyway) so I'm off to the gym something I would not normally do but it's a start. I know how hard it is, but I hope in time you will settle into a routine. Good luck.
     
  6. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    my family know my feelings but to them life goes on for their dad. Ones in India doing a yoga retreat and not messaging, ones awfully busy teaching and messaging now and again and my son is business like about the whole thing. I feel abandoned to be honest to get on with it.
     
  7. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    353
    Female
    South East
    Maybe they are unsure the best way to help , I certainly did bury my head in the sand to a degree when faced with a mental health crisis of a relative but it didn’t go away so I had to learn fast how to best help them . I’m sure they don’t want to leave you to it just don’t quite know the answer .
     
  8. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    834
    Male
    Newcastle
    "If it wasn’t for my family being upset I probably wouldn’t go on as I don’t see much point." I know that you don't really mean that @Dutchman because then you really would be abandoning your wife. As it stands, you have done your very best for her and she still needs you to go on doing that. Your life still has purpose and meaning and one day you will get through this terrible phase and see that the future is not as bleak as it seems right now.
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    I see her in my memory of yesterday wandering along the corridor and I feel so sad for her. I know she’s safe and clean and has reasonable sleep and probably not mentally suffering the way I am. I miss her so much and it’s all I can think about.

    I went out tonight with friends but I’m not much good at socialising and just want someone not to try and cheer me up. I want understanding and comfort and reassurance and hope none of them have to go through what I’m going through.

    It was said tonight ‘you hurt like this because you love and care’ How true
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Just come back from the home to see my wife Bridget.

    She’s so confused and anxious and just wanders along corridors, she can’t keep still. I managed to take upstairs to her room but I feel I’m hanging on grimly to some her and me time just sitting on the bed. But she feels anxious even there with me and wants to return to the lounge.

    I miss her company and I suppose I’m trying to hold on to the last remnant of my wife and she can’t help me. So I’m upset now and I’m going back later to help get her changed. It’s a moment of closeness that’s left to me now.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    no not forgotten or abandoned you; I have just had a horrendous time with Dads care at his home. Had to take time out to breathe a bit & recharge my own batteries
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Oh dear DesperateofDevon. How do we all manage with this dreadful condition. I often wonder if my cold attitude towards my parents when they were alive is now coming back to haunt me. My dad didn’t get much comfort from me when my mum died. You seem to have a much better relationship.

    Silly I know but I feel cheated of getting old together, happy together in retirement. Surrounded by couples here at home I really do feel marooned on my own little island.
     
  13. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    867
    I don't really believe in 'karma'.We all look back and wish we had done things differently,I certainly do!Re your children and you,it is very difficult to be in a position when nothing you do can actually help.They can't bring their old Mum back which is what you really want.Sometimes a little distance is a safety mechanism.I'm sure they haven't forgotten about you,they probably feel helpless.I used to feel as though being with my Mum didn't lessen her unhappiness,it doubled mine.As I said there are things I wish I had done differently.
     
  14. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    I’ve been to the home twice today. Bridget didn’t remember my morning visit at all. This afternoon we went to a local cafe and I think she enjoyed it....it’s hard to tell.

    Got her into her pyjamas and cleaned her and brushed her teeth. She won’t stay in her bedroom so we go back downstairs. Ive been twice today because i struggle filling up the hours of the day. It never bothered me before but time drags now. An hour is a long time.

    As I’m changing her and personal care I imagine what this would be like in our house, on my own with her, all the time. That’s always assuming of course that she’d be as compliant as she is here in the care home. She’s a strong lady and when she doesn’t want to do something there’s no shifting her.

    I suppose I’m trying all the time to convince myself that she’s in the right place and that I couldn’t cope at home. Still have nagging doubts that won’t go away.
     
  15. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Oh I tell you, it’s so hard to leave the care home after a visit to Bridget. She can see me from the lounge opening the outside door. She’s looking directly at me and her eyes seem to be asking me not to leave her. How much heartbreak can one man take because, I tell you, I’m reaching my limit. It’s now nearly 22.00 and I know she’s in bed as I am and that’s a bit of comfort to me.

    I’m going tomorrow because she’s running out of pants otherwise I’d miss a day. But when I don’t visit I agonise over how she is.
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    I have discussed with friends how we behaved towards loss when we were younger .

    When my grandfather died, I was only 7 but I just remember my grandmother getting on with her life and she was the same as ever towards me. When my father died, my mother was in a relationship pretty soon after so she was all right.

    It`s only now I`m experiencing loss myself, I understand just how devastating it is. A friend of mine said no one needs to know the pain before their time and I think she is right.
     
  17. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    101
    Female
    I have been reading your comments @Dutchman and I feel for you and your troubles. I deal with things this way....I ponder and worry and wonder and more worry then decided enough and make my mind up one way. Then.... once my mind is made I forget all the 'what ifs' and concentrate on making what I decided work the best way I can so I can move on. I think I read you had decided on care home care for your lovely lady, and it's probably the best deal. Now you have to work on getting you up to parr and to a level where you enjoy your visits and maybe find something to fill your other hours. You have made a decision. Now go all out to make it work, put all your energy
    into it and one day it will be right. It won't feel like that right away but it will one day. you made the decision, you know the decision is right. now's the time to make it work............Best Wishes
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    2,248
    Dutchman, just a different view. If I have any guilt, and I would call it grief, not guilt, it is because Keith was so much happier in his nursing home than he was at home with me. He had loads of people to talk to, loads of people smiled at him and hugged him, lots of noise and things to look at. At home with me it was far more tense and strained because I was exhausted and stressed and frankly, afraid. I was not the life and soul of the party and he found the party he so badly needed in his nursing home.
    Things are not always what they seem. I think you are doing very well now, going in to help your lovely wife as often as you can.
    with love, kindred.
     
  19. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Thank you Kindred. I think I’ve said this before. At home we did next to nothing. Out quickly in the morning for breakfast and then sitting on the sofa and then bed about 20.00. I was ok with that up to a point and although I didn’t like it i it put up with it. Her physical presence was enough.

    Her absence from the house has hit me like an express train. And now I see a decline since she went to the home and I’m advised to get a hobby, a pet, join this or that, be with people , etc . Honestly, I’m holding on to my sanity by my finger nails.

    l feel guilty, empty, frightened and all the feelings of grief. I went to a bereavement group today and found it a struggle. They all seemed to have plenty to fill their lives.
     
  20. Starbright

    Starbright Registered User

    Apr 8, 2018
    447
    Female
    You have put that so aptly @kindred this is me and exactly how I feel although I am still caring for my Oh at home ....being afraid is I’m sure how my Oh feels too. ((( hugs))) A x
    @Dutchman ...Baby Steps and one at a time ...you are getting there albeit slowly...still doing the very best you can helping your lovely wife each time you visit her. Do take care ((( Hugs))) A x
     

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