Dementia’s journey

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

  1. nestle

    nestle Registered User

    Jul 22, 2016
    66
    Female
    Southwest but Yorkie by birth
    We had live in carers for a while , his family wanted us to try it out but it didn't work it just confused him all the more and when I went away to visit my sick Brother he really went off the rails. Every time I visit him, emotionally I want to abduct him and bring him home but reason tells me his needs are too high to be met by me alone. It is a long, long road to acceptance . I think Dutchman there is no doubt about your devotion to your wife but from what you've said you couldn't have carried on, people say that to me but it is so hard to accept. My support worker has recommended instead of fighting my grief I should accept it as part of me and immerse myself in it, it does somehow seem to help.
     
  2. Beanie01

    Beanie01 Registered User

    Dec 4, 2017
    18
    This is exactly how I feel right now! This disease steals so much from our PWD and us!
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,630
    @Dutchman @nestle @Guzelle @Beanie01 @Grannie G
    Sending you all
    (((((((((((((((((((bighugs)))))))))))))))))))

    Yesterday one of the care home residents came into Dads room while I sat holding his hand as he lay trapped in his own world; her kindness & compassion brought tears to my eyes & she cuddled me as I cried, for all I had lost. Her empathy & kind words were a moment of clarity in her otherwise confused day. She was a mother figure again for a few moments.

    I believe another forum contributor posted a thread calling these moments “diamonds” - it might be that we don’t see our PWD diamond moments but they are still there.
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,630
    @Dutchman
    Just reread your first posts, keep looking how far forward not only you but your wife have come. It’s hard to see your wife in a more content place & not want her to be at home; that’s a natural reaction. Re - reading old posts helps put some clarity on your situation.
    loneliness is an awful feeling, especially being in a room full of people & still feeling even more isolated.

    All the advice in the world doesn’t help, until you make those first painful & tentative steps for yourself. Meanwhile we are here for you.
    (((hugs)))
     
  5. Dutchman

    Dutchman Registered User

    May 26, 2017
    406
    Male
    Devon
    My wife has been at the care home for just over 4 weeks now. This Friday it’ll be 5 weeks.

    I get well wishers, old friends who ring me up to see how I am, even my own daughter suggest I get a dog. I’ve even had two people ask if I’m going to sell the house now. I could do without these comments but it’s understandable as they cannot begin to understand what us on the forum are going through. I mean, there are some days when the biggest decision I can make is to get out of bed!
     
  6. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    My OH has been in the care home for 4 weeks now. I had a lovely visit with him on Saturday. He was laughing and very loving. I was thinking of bringing him home with Carers part time. But today he was so different our daughter took me with my baby grandson and he was begging to come home and accusing me of having affairs with the milkman. We couldn’t pacify him whatever we said it was wrong! I’ve had this such a lot at home with aggression aswell. I know I can’t do it alone and I have tried Carers before but he wouldn’t accept them! It’s so very difficult if only the mood on Saturday was there all the time I know I could cope then.
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    406
    Male
    Devon
    Yes that’s the problem isn’t it. If you take OH out of the home because everything seems ok at the time and you believe you can cope and then when they get home it all goes terribly wrong, then what? Believe me I’ve agonised over this many times and I just can’t take the chance.

    I met with a friend today, a carer, used to run homes years ago and has a wealth of experience with PWD and just as I started to explain my dilemma she said stop right there, I know what you’re going to say. Please don’t do it, your wife is cared for, safe, and calm. Who knows what could happen if you got her home. Could you take the chance. I know you miss her, but !!

    I’m missing my wife so much but when she was here she was uncontrollable and I couldn’t handle it. I wish I’d had taken a video of her behaviour to remind me although I do have all the past posts to remind me.
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    406
    Male
    Devon
    Your right of course, I couldn’t have carried on for much longer the way things were. There was no way she would get undressed, wash herself, her hair, wasn’t eating, just wanted to leave the house, to get away. Now she’s washed, fresh, calm, and eats probably better than I do. I know she sleeps better than I do.

    It’s so easy to forget or even to dismiss what it was like back then when you miss them so much. It’s the physical presence I miss, someone else in the house.
     
  9. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    Yes so do I. The house feels empty I do have 2 cats which are some comfort.

    My OH has vascular dementia and Alzheimer’s. He wasn’t washing at home I could manage to get him showered once a week but he never washed his face in the morning or brushed his teeth. He does now.

    I just feel so guilty when he is begging to come home and making me promise to take him home tomorrow. I know he will forget tomorrow!

    I also need some repairs doing on the house which he wouldn’t have done he said he would do it. I have had a cat flap put in the back door as he would never have one. I am going to get them done now while I can.
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    406
    Male
    Devon
     
  11. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    That’s sad. You could get another or a dog that might be more company,
     
  12. Dutchman

    Dutchman Registered User

    May 26, 2017
    406
    Male
    Devon
    I’m in bed and I cannot see any point I’m getting up. The moment I wake up all the thoughts of loneliness flood back in and my poor wife in the home. I’ve nothing planned for today perhaps a walk. I really don’t see any point of a future without someone to share it with. I thought I could be ok with being on my own, how wrong the reality turns out to be.
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,630
    You share your days with us, many walk the same path.
    I would’ve lost without my four legged friends.

    Guide dogs for the blind are looking for dog walkers.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    Good morning @Dutchman.

    Have you seen a doctor? I know anti depressants won`t solve your problems but they might at least help you through this dreadful time.

    The feeling of loss and loneliness is unbearable and something to numb the heartache might help.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,630
    I know you felt that the counselling wasn’t helping but you really need to keep going, the Prozac will work. It takes at least 2 weeks to start feeling the benefits.

    It’s early days & you need to find a new routine, difficult to instigate at first but you will feel better for being more active.
    This won’t stop you from grieving but it will help the process.

    I know people who have terminal diagnosis & are fighting to live longer. Their brave struggles inspire me, life is precious.
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    Thanks @DesperateofDevon. I missed this information.

    I have heard how beneficial antidepressants are so do hope they will kick in soon for you @Dutchman.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,630
    Honestly they do help, my own experience 20 years & counting. It’s a slow process & dark days mean you wonder if the light at the end of the tunnel maybe a train coming!!! But it is a small pin prick of daylight just keep heading towards it, one foot infront another at a time. It’s small steps but you are moving forward.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    406
    Male
    Devon
    I’m on Prozac for a week now. I have these horrible strong tenderness feelings in my arms always when I’m feeling rubbish and the negative thoughts flood in. I suppose it’s it’s my body reacting to the stress
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,708
    Kent
    Would it help to understand how much your wife still needs you even if she is in a care home? I used to have some lovely visits with my husband, once he had settled and was no longer aggressive.

    I can honestly say the last four years of his life in his care home were better than at least 10 years previously when his dementia was developing and everything I did was wrong.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,630
    Yes it’s stress, the body reacts immediately to emotions & in physical ways. It’s being aware of these triggers that help you deal with them, xxxx
     

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