Dementia in OH and how it affects relationship

Discussion in 'I have a partner with dementia' started by Chrystle, Aug 24, 2018.

  1. Chrystle

    Chrystle Registered User

    Feb 15, 2018
    My husband was diagnosed a year ago, mild to moderate. He needs a lot of help from me, but I think most people will have seen only slight changes so far - long may that continue. I wanted to talk bout how Alz is changing our relationship - I feel I have lost the intelligent and equal partner of 40 plus years - apart from brief and delightful glimpses. Easy and humorous conv about no-longer-shared memories appear to be a thing of the past. My Living Well Course advised against 'testing ' memory, which I don't want to do, but it's difficult to always avoid chatty musings, and then get out of the conversation smoothly, when it's clear it's heading nowhere.
    OH seems to have lost most of his executive function, so nearly all decisions, major and minor are down to me. Luckily I can handle most of it, but it's lonely and scary. We need to make a major decision about a house move before too long, and I fear I may end up almost bullying him to make the change.
    It seems to me that most of our friends and family have no idea at all about this side of things, and I hold back from sharing because it feels disloyal, I may not be believed, and I'll just sound like a nagging wife - which I do often feel like - get sick of the sound of my voice, answering questions- as briefly and clearly as possible! - giving instructions/reminders etc etc
    Should love to hear insights from others similarly affected, and thank you for reading this - I did look for earlier threads on the subject, but couldn't find any, Best wishes to all you brave people out there
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    What you write about is very common, if not universal in the area of dementia. It’s one of the reasons this mutual support forum exists. Please do share problems and experiences as well as ask questions as we are all supportive friends here.

    There is no need to feel disloyal for seeking help from family etc as we all need this. I think it would be a rare class of person who could manage alone to the end of the dementia journey. It isn’t weakness to talk to others and seek help when required. You certainly won’t be judged here. Good luck to the both of you.
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    Point where all the big decisions are all yours is a very hard place to be.
    Have you got a sibling or one close and trustworthy friend that you could unburdened yourself to and trust their advice to be in your best interest?
    Now you have found TP please keep posting so we can support you at this difficult time
  4. katetk

    katetk New member

    Sep 29, 2017
    He to ,
    I also have a husband who was diagnosed nearly 2 years ago now and he is in the early stages of Alzheimer's. I also feel that I am having to cope with everything and like you find it difficult to share as it sounds like I am disloyal. I have spoken to a friend, whose mother suffered from Alzheimer's, and found her tips most helpful but it still not the same as dealing with a partner or husband. He still wants to be involved in our financial affairs ,as we are landlords ,but he can't cope so it is almost worse as I have to deal with the problem and correct his mistakes as well so it is double work. I try to get some time to myself at the gym and encourage him to go to his activities but feel like I end up nagging as well as sometimes he doesn't feel like going but I know he will benefit. I guess if we didn't care it would be so much easier to just walk away and ignore the endless questions and repetition and now he says he doesn't understand me as I mumble so it gets worse! You are right when you say that others don't realise and when they talk to him he will appear fine so his family think I am exaggerating as they don't see the problems of day to day things like losing keys, handing over the wrong change, buying unnecessary items and repetitive questioning no name but a few. I guess having the forum and others who understand will keep us sane.
    Good luck,
  5. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    I think we all find it difficult to,adapt to managing things, my husband did all the finance but now I do it, he has no problem with that. I don’t like to ask family as want to be independent as long as possible. Working in an office previously (albeit many years ago) has helped. It helps to,have friends to ck vide inand that is that this forum is for too.
  6. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @katetk, all of what you say is common in my life too. I agree, it sometimes feels like I'll go mad. TP helps maintain sanity.

    Now that you have started posting I hope you continue as your experience will be valuable to others and others may help you.
  7. Manc70

    Manc70 Registered User

    May 30, 2018
    S. Yorkshire
    Hi Chrystle, I have just opened TP this evening as I was feeling pretty desperate and hopeless and saw your post and mmediately don’t feel so alone. My situation is similar in lots of ways. My OH was finally officially diagnosed about four months ago but the symptoms, tests etc have gone on for two years plus I can look back and in hindsight there were signs a year or even two before that. I have gradually had to take over the decision making, running everything and I suppose like most of us I surprise myself with my newly acquired DIY skills and a previously missing sense of direction - always accepted my husband could find anywhere, without Satnav, finding his way to familiar places was one of the first things I realised he was having trouble with. The change in the relationship is so very hard to come to terms with, I’m sure we never will. This evening we had a rare conversation in which I got carried away talking about an old camper van we had years ago, great trips and memories, which of course he no longer has, and I ended up feeling (quietly) bereft that we couldnt share those memories. We’ve had a particularly bad week and I was already feeling as though I couldn’t cope (but of course there is no alternative to not coping!). I just yearn for him to ask if I am ok or tell me everything is going to be fine. I know he can’t help it but I sometimes feel angry that I have to nag so much, I just get so tired. Like you we have friends who, as lovely as they are just don’t really get it as they see him still being good humoured etc. Then when we are alone more often than not he will have a mood or sleep or not speak etc.
    Oh dear once I start I could go on and on, sorry.
    I’m sending you best wishes, especially in your decisions regarding moving house. We do all these things with best interest and intentions and I hope you are able to not feel as though you are bullying which it certainly isn’t.
    Take care
  8. Thethirdmrsc

    Thethirdmrsc Registered User

    Apr 4, 2018
    All of this resonates with me. It’s been a year since my husband was diagnosed. He missed my daughters wedding last week, as he couldn’t cope with being in the rented house, so I had to take him home. Tried to move in to separate bedrooms as he hates ours, and can’t sleep, but you would have thought I had suggested eating his dog, tears and more. I would like to move closer to my daughters and to a bungalow, as we have stairs which he falls down, but he thinks I want to leave him when I suggest a move, so maybe it’s too late for that. Sometimes it’s like a switch, we can have a good conversation, then he will ask a totally random question. People look at him and think he is ok, but if you spend time with him you will find he is not ok. I hate making all the decisions all the time, and when he asks for the 6th time did I sleep well, when he kept waking me up, I just want to scream. You cannot keep telling family this, and they sometimes don’t want to know all the details. According to the scale, we are between 5 and 6! It is what it is.
  9. AliceA

    AliceA Registered User

    May 27, 2016
    Reading all these post echoes in many ways. First I think we have to realise that we are grieving so we have to be kind to ourselves. Secondly we have to realise we are stronger than we think. But weaker than we sometimes feel we should be. The whole situation is paradoxical.
    This week the loss of our bus really hit home, I have had several appointments crop up some without warning, suddenly I hit bottom. Seemingly small things upset the balance. Other times I fight our corner with such clarity I surprise myself.
    I also doubt my sanity, others see a man who can look fit and well. Yet when tired seems to shrivel and shrink. I just want to hold him tight.
    Decisions seem easier when they are yours alone to make, but we try to preserve the dignity, there are flashes of keen interest that fizzle out like a damp squib. Hurt looks if we do not consult on the obvious. It have just arranged for building work, this stirred distant memories of a former very practical clever man.
    Lucid days and muddled days.
    Others see from their own perspective not yours. In one breath I was told I do too much then I should get us out more.
    Sometimes mobility and coordination are a real concern, at other times a sudden agility makes me wonder if I am imagining it all.
    I know I should ask for help, people say I only have to ask. I need my independence, I do ask and I see that slight hesitation, a reluctance. Perhaps I am too sensitive in this regard. Perhaps this is my real weakness.
    I am given help but it seems on a whim, not always what I feel I need. If I plan ahead I am told I worry to much, in fact the plans stop me worrying.
    Most things seem a catch 22. Take care of yourselves.
  10. Sammie234

    Sammie234 Registered User

    Oct 7, 2016
    #10 Sammie234, Aug 24, 2018
    Last edited: Aug 24, 2018
    All Of the above OH now 67 diagnosed at 63 ended up doing everything now and it’s tiring and heartbreaking to lose what you once had as a couple and find yourself turning into a carer instead of a wife and partner, the constant repetition is what drives me to distraction I have to give him a process for anything I ask him to do. Ask for coffee I get tea. :( He said this evening do you want some cereal so I said yes sadly it was totally inedible floating in that much milk it was like mush but said thankyou and ate what I could. Yet to others who don’t see him everyday he seems ok. Take care .
  11. AliceA

    AliceA Registered User

    May 27, 2016
    This small things really hurt, I know. Like you I accept what is given and feel rather that than not at all. Take care, try and sleep. Should sleep now but this quiet time is precious in its own way.
  12. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    North West
    Hi Chrystle,

    One point from your post really struck me. Not being able to share common memories. So many people think a PWD can remember things from long ago but it certainly is not the case with my OH. I think everyday when we are watching TV there are missed opportunities for reminiscing. All I can say now is "We went there", "You had that car" and he just agrees. A form of conversation I suppose.

    Being a little further down the line than you and your partner I now make all the decisions. It is lonely and worrying. I tend to take my time, even making pros and cons lists. I recently organised sale of our house and a move nearer family. OH goes along with my decisions because he says he can trust me which was nice to hear in the solicitor's office.

    Going back to the title of your thread I am sitting here trying to describe our relationship now - but cannot. It is not marital, or parental, it is just what it is and changes day to day.
  13. Jaqkelly53

    Jaqkelly53 Registered User

    Sep 18, 2017
    My OH is in middle to late stages. We moved house a year ago. When I first suggested it he refused to move. I spoke with his specialist who advised me to do it within 6 months or oh wouldn’t cope. Luckily the perfect house appeared at 1.30 am as I browsed various sights. In an area I had never considered but it was the best thing I’ve ever done. I didn’t discuss it with him but told him we were moving as” he had suggested”. It worked and although initially he kept asking when we were going home he did settle. In the year he has lost the ability to dress and identify objects etc but he now goes to his “club” 2 days a week which was a lifesaver for me. I didn’t realise how stressed I was until I had time to myself. He can’t be left alone or go out unsupervised but at his club he can still bluff his way through conversations.
    You are going to have to make the decisions and try to find a way to convince him it’s what he wants too. I’ve become quite adept at dropping decisions into other (brief) conversations or while he is looking at tv but not following the programme then keep repeating it at various time. He doesn’t remember but on some level it seems to reduce resistance.
    Hang on in there. We’re all in the same boat but at different stages of the journey. Let of steam on this forum because someone will be experiencing the same problem.
  14. B72

    B72 Registered User

    Jul 21, 2018
    #14 B72, Aug 26, 2018
    Last edited: Aug 26, 2018
    My OH has yet to be officially diagnosed. But I too often feel bereaved too. My lovely, intelligent OH often isn’t ‘there’. On a bad day he’s like another person. The intelligence has gone. I’m left with someone quite different.

    Like others, I’m also having to learn to do all the things he has done and wanted to do during over 50 years of marriage. I’m not sure which I find worse, anxiously watching while he does something, not sure if he can (driving safely included), or taking over and doing it myself. Firstly I’m having to learn to do lots of things he’s always wanted to do, and secondly I can’t help feeling upset for his sake that he can’t do them any more.
  15. PalSal

    PalSal Registered User

    Absolutely loved your expression 'We’re all in the same boat but at different stages of the journey.' You are so lots of levels.

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