1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

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
    440
    Male
    Devon
    I’m off the sleeping tablets so that’s a bit of progress. Doctor still wants to continue the other pills and see me in a weeks time. They are so caring at the surgery, I’m very lucky.
    I didn’t go to see my wife yesterday but will today. I always always feel that I’m letting her down when I don’t visit. I still can’t accept that she should be in the home and I know that’s not logical but I’m emotionally broken in some respects.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    It sounds as if slowly you are coming out of the mire @Dutchman although the trauma is still present.

    It`s good to hear you are getting quality help and support from your GP.
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    440
    Male
    Devon
    Yes I’m lucky in many respects as I have a family and friends who care.

    I have said this before I’m sure but just need to communicate today, get it into the forum. I’m lonely for my wife and I get very anxious to where my future is going. I’m not intending to get someone else as one of my neighbors insensitively suggested. How could anyone replace her?

    take it one day at a time I’m advised but future thoughts creep in , ambush you when you least expect it.
    I’m writing this in my nice warm bed. Yes, I’ve been out and now back to bed. I realise it’s probably not good to do this but I’m at that stage where I just want comfort and emotional rest.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    It`s good you recognise this and allow yourself the space.

    I used to call it `drifting`. It was a time when I allowed my body and mind to choose.
     
  5. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,556
    Female
    England
    I can understand the back to bed. In the early days of my husband going into care I felt my bedroom was my refuge. Nobody but me entered that room and I felt safe. I could be sad, I could be happy and I could be reflective, I could be me with my feelings not troubling anyone else. So I was early to bed most nights and times throughout the day when I just got in. . It’s now nearly eight years on and three and a half since my husband died.

    My bedroom is my sanctuary, My bed a large welcoming place to be so I read in bed, I come on the forum, I message friends and family, I knit. I’m in my very own space that no one else invades and it comforts me still.
    We need to have a place to go with our thoughts, our feelings and our sadness and what better place than bed.

    It will get easier but it takes time, do we ever get there? I know I haven’t but I deal with it better as time goes by. Not every day is a sad day. DTP is also a nice place to come to as well.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,284
    And bless you, Dutchman because the openness of your posts encourages others to tell it how it is, too.
    Yes, personal belongings are very difficult. I kept a journal of some of the things Keith said not long after he was diagnosed. I spent so much time with him doing colouring, sitting in cafes doing little children's quiz books. When I have the courage I read extracts and in one he said how fantastically happy he was. That means the world to me. Are their any possessions you gave her that meant the world to her?
    I try try to hang on to bits of happiness in memories. Don't always succeed, Peter, because it is awful isn't it. What an ordeal for us, what an ordeal.
    with warmest wishes, Geraldine
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    440
    Male
    Devon
    Just when I thought I’d turned a corner I had to go to one of her clothes drawers and that set me off sobbing my heart out.

    Better now. I had a phone call from the doctor concerning her appetite and he has contacted the home and the home has now phoned me. I can do no more. Obviously the outlook is grim if she doesn’t eat .

    I talked to my son last night who is concerned about me and my sanity. His attitude towards his mum is matter of fact and has mentioned twice now that he wishes it was all over. I find his attitude insensitive even though I know he wouldn’t purposely upset me but I want to hang on to my wife for as long as possible. I don’t want to fall out over this but he needs to understand my feelings more. How I do that I don’t know. At least he phones me !

    How the ripples of someone’s dementia spread out!
    Bless you all out there doing the best we can in impossible circumstances.
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    440
    Male
    Devon
    It’s great to hear that I’m not being weird by wanting to go back to bed at any time during the day. The way I see it (and this is backed up by my counsellor) we must do what we feel is right for us at the time and disregard convention. It’s us going through this, no one else, and no one can judge our actions.
    The only trouble I have is getting out of bed in the morning if I’ve nothing to get up for. I go to the home most evenings and that’s about enough for me otherwise it’s too emotionally draining.

    I note how long it’s been since your husband died and I really admire and love the way you can still discuss your feeling, especially directly to me. Thank you so much for your compassion

    Bless you Peter(Dutchman)
     
  9. Lirene

    Lirene Registered User

    Sep 15, 2019
    142
    We are all individuals, what works for one person maybe not suitable for others. Please try to do what feels right for you and what gives you most comfort. Be kind to yourself. My thoughts and prayers xx
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    I’m just catching up here and have just read the posts about the comfort of staying in bed. It’s three and a half years since my husband died and I too still like the comfort of being on my own and cosied up in bed. I find that I’ve been going to bed earlier and earlier. I’m not long in from having a lovely meal out with old friends but I’ve had my PJs on since about 4.30. I think we all do what is right for us - nobody here will judge. The best thing is being able to talk about it here.

    I also understand your feelings about your wife’s clothes. I have kept several items of Bill’s clothes and will never give them away. His dressing gown hangs in my bedroom and i wear it instead of mine now. Any time I’m away from home overnight I take one of his T shirts with me and it comes to bed with me!

    As has been said before - do what is right for you. Wishing you strength.
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    440
    Male
    Devon
    I can’t begin to express my admiration for you all and the different ways you are trying to get through the wretched consequences of dementia.

    my heart felt blessings and virtual hugs go out to you all
     
  12. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    280
    Could you just tell him that while this may be how he feels it's not how you feel so youd be glad if he'd not express these thoughts to you as you find it upsetting. I don't think he would be hurt by that and should respect your request.
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    440
    Male
    Devon
    Yes I’ll try that Roseleigh, Thanks.
    Back in bed at the moment but steeling myself to go for a long walk soon even though it’s raining. As soon as I walked into the home last night she smiled when she saw me so that was nice. I only hope she doesn’t miss me when I go. Why is it so complicated!!

    5 weeks till Christmas but it seems a long time when my wife isn’t eating properly and anything could happen. If I’m finding it hard to cope now what’s it going to be like when she’s gone.
     
  14. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    But then, Dutchman, your beloved wife would be going through what you are going through. And I know you wouldn't want that for her.

    Keep a couple of your wife's jumpers. It's comforting to have something like that. I'm glad your counselling session went well. It's a long road, but there is no hurry. And, on these dark, miserable mornings, a nice lie in is good. Take care of yourself.
     
  15. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    Dutchman, everyone is different. My husband had our living room as his "office". Over the years, he hoarded and crammed in so much stuff, you could barely get in there. It's a small room, but he had floor to ceiling, wall to wall bookshelves, all crammed. He even had shelves in the window, crammed with files full of old newspapers etc. He had three desks, all screwed together, with shelves built in on top and underneath.
    When he went to the nursing home, I felt that it would be far easier on me to clear out that room, and redecorate it, while he was still alive, and I could do a bit and then go visit him. By the time he passed away, the room was done. I just felt that if I left it, clearing all his "treasures" would be terribly final, somehow. I kept his favourite cardigan, his jacket and his bathrobe and a couple of his favourite treasures. I won't part with those. All his other clothes went to the nursing home.
     
  16. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    Maybe your neighbour was trying to be kind. Thinking that it would ease your loneliness, which of course, it wouldn't. Without experiencing what you are going through, others just don't understand. The week my husband went to the nursing home, I bumped into a man I know. He asked how things were, and I burst into tears, and explained. He asked me out. On a date. :eek: Insensitive clod. :D

    Comfort and emotional rest is absolutely the thing you need. It sounds like you are coming to understand that you matter too, and are worth taking care of.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    When my husband went into residential care I sent all his wearable clothes in with him and the rest went to charity shops. Some inner sense told me it would save me agony when he died.

    My husband didn`t have a lot of possessions so there was little of sentimental value. I do have his wallet, his driving licence and his ID key fob. These were important to him and we spent many an anxious hour searching for them when he couldn`t remember his safe places.

    I have his photos in every room and on my phone and computer. His photo is the first thing I see when I log on.

    Even though our home has been decorated since he died, the colours and furnishings are the same as they were when he left. I know this is ridiculous in some ways as more often than not he didn`t recognise this as his home when he was here.

    Dutchman said:
    I’m not intending to get someone else as one of my neighbors insensitively suggested. How could anyone replace her?

    We all have our own ways of being comforted. Nearly 6 years after he died he is still with me.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    440
    Male
    Devon
    Where are are all we men? Surely there must be some like me going through agony and wretched feelings. Try unloading on the forum and refrain from being blokes who keep it all in and tough it out. It’s ok in 2019 to open your heart, cry, and you might find some comfort.
     
  19. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,942
    Female
    Dundee
    Well said @Dutchman!
     
  20. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    873
    Male
    Newcastle
    Well, I'm a man and I've never been afraid to unload when necessary. It isn't always clear if posters are male or female, some may not want to say, others may use a different gender/persona to preserve their privacy. There appear to be many more females than males on DTP and there must be all sorts of reasons for that. But there is also a solid core of male contributors who sometimes seek solace for their own issues or (just as importantly) try to help others by giving advice based on their own experience.
     

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