1. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    sorry for the essay! it's a log of how I see things ...today
    Normal? Whatever that is! But wanting normal life whilst living with dementia is how my PwD rolls.
    disinterest or denial
    Is there a difference between the two. I feel there is. My PwD has disinterest in ANYTHING dementia related. Six years in he isn't in denal, he knows he has it and he knows the prognosis. He just says he doesn't need to know. It is his way of dealing with it. He knows he has Mixed Dementia, he never remembers which sort has been diagnosed. But again he says he doesn't need to. He has now refused to go to a group as its dementia bias and also the dementia cafe he has said he probably wont go to many if any, again same reason, its built around dementia. He doesn't want a life built around dementia. He wants/needs "normal" for a long as he knows what normal life is. normal life to carry on, with dementia in the background......To be able do things because he wants to, or we have an interest in, not because someone thinks its right and "what we (PwD) need"
    "normal" is great if it can be implemented. He is lucky that a local charity shop has a program that means he can go there once a week to feel useful in the community. He helps in the sorting room and sees it as not 'dementia biased' so its as normal as it can get, and it boosts his spirits. It also gives him a different conversation he can have and (make up ) tell a tale about. He has a strategy/skill to be able to turn a conversation around to something HE can talk about. This charity/normal activity fills this spot. Its somewhere he goes without a carer (me) as they have trained staff to support. So any tale he tells related to it becomes a conversation point, again helping in the social aspect in other settings. Feeling normal is important.
    I get all that.
    BUT.
    we don't have dementia but as carers it affects our lives. I, as his 24/7 sole carer, am also living with his dementia. To keep this running smoothly I feel a need to be aware of all the details and support out there. I need the latest information/study or a snippet that says this is how it is ... I research and find an interest in it all. and as I read I am able to understand more and support. Sometimes I will read something and think AHHHH that explains a lot I now know why this or that happened. But I can't share it. I try and open a discussion, and sometimes ask....I read an interesting article ..would you like to read this? 'not really' is the reply. as with all us carers, I adapt what I find to suit our situation and what we do keeps it all running smoothly.
    But this disinterest he has now seeps through to the whole family. He doesnt/wont let/tell the family see how he really is. His 'normal' kicks in on the odd visit we get. I pass on information and it seems to be pushed aside as me making a big thing out of nothing. .... 'leave him be' they say. I pass on information/articles that might help our (adult) children understand what is going on, but its not read nor commented on. Life works here because I have things in place. We have adapted so he can still do things that keep his independence and help keep his 'normal'
    I don't pass this information on so they can talk to PwD about it. Its to support me, and my roll in the family as his carer (their Mother). to open a conversation that shows they understand, that they support me, that I am 'doing it right'
    I used to try and talk about how we were coping. But they talk with PwD and he says "Oh I am fine" the family see him and have his 'normal' conversation ' he seems ok when I spoke to him' type comments....so what's the problem he is happy and doing ok... leave him to do as he wants and get through the best way he can'
    I am feeling that anything I say is making a fuss. but one day it will all collapse and then it will be said 'why didn't you say' ........
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,095
    Male
    Bristol
    Sadly much of that is familiar, @silver'lantern. My OH's daughter didn't realise or want to accept how bad things were until I went for counselling about 3 years ago.
    The loneliness you describe has to be the worst part. If the person you are caring for (husband or partner is it?) won't go to cafes or clubs would it be possible for you to go to carers support groups? You can always say you're off shopping or visiting friends.
    You can of course post anything here you want to talk about or questions you need to ask, so you are never totally alone.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,786
    Female
    South coast
    Oh yes, I recognise so much too.

    I think that your husband has neither disinterest or denial - I suspect its anosognosia, which is an inability to understand that you have something wrong with you. Some people will vehemently deny that they have dementia at all (my mum was like that), but others will accept the diagnosis, but deny any of the symptoms. It sounds like this is what your husband is like, so you will never be able to get him to accept things for dementia - because he doesnt have those sort of problems. How many times have I heard my OH say "Im fine - I dont have any problems" ? :rolleyes:. The way to get round this is to "repackage" things with other names eg dementia day care might become "his club"

    BTW the old "normal" kicking in when family visit is well known on here - its called "Host/Hostess Mode" on here and is the most annoying phenomenon going. Its a subconscious survival instinct and means that when family that they dont see often, or medical staff etc, come to visit, they can sort pull themselves together for the short time they are here. It does take a lot of effort to do it, though, and it leaves them very tired. So what happens is that the family visit, he seems "fine" to them, they think you are exaggerating, they go home and you have to pick up the pieces with PWD who is now tired, confused and grumpy :mad:

    I can no longer have conversations with OH and it is indeed very lonely. The hardest bit is that when we have had problems in the past we could talk it over and plan what to do, but now I cannot do this. OH has no idea how many problems he has. He thinks that he is able to do so many things that he really cant do any more. I have had to make decisions off my own back and just get things organised.
     
  4. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    thank you for your reply...i am just finding my way around the forums...mostly just reading....so will get used to posting/asking
    yes its good to know we are not alone. i have my own outlet via friends so him not wanting to go to groups is ok. just would be nice to get some family involvement :/
     
  5. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    thanks for your reply. he is totally aware that he has dementia and all that holds for the future and has put things in place to prepare for it.....LPA etc. he just doesn't want to go to the group or cafe. he is not interested in them. i don't think he gets anything from them but he did go to see before his mind was decided. he took weeks to make his mind up so wasn't a snap decision. he has trouble making decisions but with time to process he gets there. he gets much more from his volunteering at the moment. i am lucky as he is aware of his limitations and if we cant find a way around something he is pretty easy going about not doing it. i am sure it will all change as it has many times over the past six years

    yea he does the host mode well. (apart from remembering to make to tea! haha) and then shuts himself away once they have left
    i can relate to no longer having a conversation and talking things over. i miss that too. its a big responsibility making all the decisions. but easier then the muddles i have had to sort out when he was still involved!
     
  6. Peachez

    Peachez Registered User

    Jun 19, 2016
    125
    Female
    South East England
    I've managed to get my OH to go to an exercise class, rather than just a 'chatting' meeting, this seems to hold some purpose for him.

    The Hosting thing is just SO frustrating. Think my step daughter thought I was batty, until her father nearly collapsed in front of her one day from his orthostatic hypotension... funny, didn't hear from her for months after that visit...
     
  7. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    Yes I agree. Something that more purpose to it. That's why he enjoys his volunteering afternoon and gets a lot more from it
     
  8. Bod

    Bod Registered User

    Aug 30, 2013
    1,182
    Try introducing your adult children to this Forum/website, hopefully they will be educated.

    Bod
     
  9. White Rose

    White Rose Registered User

    Nov 4, 2018
    123
    So much to say about your post. I'm angry for you because your children don't want to see the truth of their father's illness but worse that they don't want to see what you're having to go through. We need more on TV, we need to show what carers are actually having to deal with on a day to day basis. It seems people don't want to know - my brother is an example, not once has he asked how my partner is or how I am (in the nearly 4 years since the diagnosis!). One of my partner's children does ask and is very empathetic, the other 3 don't ask how their father is, don't care about what I'm dealing with or that I have a right to a life as well and have never even said thank you to me for caring for their father. Let everyone have a week of caring for a person with dementia 24/7 on their own and then see what they think. Perhaps that's an idea for you, leave your husband with the children for a week while you go and have a little holiday. This has turned into a bit of a rant, I didn't realise I was angry at the situation we find ourselves in - sad, depressed and stressed are more usual feelings!
     
  10. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female

    sorry i realise i have missed these and have not replied.
    I do try Bod to get them interested but they don't respond anything I comment/pass on. So I really dont think they would, so this will be come 'my space'

    Thanks for your reply but please don't feel angry @White Rose The family see the truth as he lets them see it. Like you I also have one that shows empathy. There is a difficult understory I cant really talk about today so I just have to accept this is how it is. I have to tell myself that if ever there comes a time of real emergency that I am sure they would come and support me. Its just at the moment they really don't see there is a need.
    There was a time I did used to get angry/cross/annoyed/upset but realised all that negative thoughts were doing was dragging me down. I then didn't cope with life at home as resentment/depression started to creep in. I had to take stock....step away and reevaluate my life and expectations.
    so
    I wrote it all down and sent them all the same letter. So they are all aware what is happening and I also told them my limits, my line in the sand and what I am willing to do for PWD. (again a long story not for today)
    like I said IOP I think one day it will all collapse. But positive thinking kicks in and I know I have done all I can for PWD and with keeping them updated.
    For now I tootle along best we can. My best is good enough. My best is darn good!
    If no one is interested then....
    no one can say I did it wrong
    no one can say I should have done whatever/better.
    I will be able to walk away and know he has had the best 6 years(so far) and, in the main, it works for me too. (only comes a little unstuck when I am ill.)
    Of course we/I have bad days we are human. But mostly PWD is happy, cared for and has all he needs met. I now have a contentment too, and we Tootle along together while we can.
    So please don't feel anger. I wish it could be different but anger is gone as it wont fix broke. Not worth my getting angry /upset about. For now we are 'keeping it normal.' At his request, His normal with limits guided by me..... it's not denial it's our survive. He says while he can remember and enjoy he is doing. When he can no longer then is the time people can tell him what to do and what he needs.
    happy Tootling :)
     
  11. White Rose

    White Rose Registered User

    Nov 4, 2018
    123
    Well done to you, you seem to be finding your way through it in a positive way, I'm in awe of you for your positivity. I can't see any positivity, I just see my life seeping away and I can barely remember my partner as the intelligent, caring, funny person he used to be!
     
  12. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    @White Rose I will admit I have struggled this past 12/18 months and so nearly walked away from it all. But taking stock and reevaluating I dropped anger and despair, and decided hang on.... this can work if I just get on with it. It was not as easy as that one sentence but along those lines. It's not easy, its upsetting and frightening and overwhelming. It's lonely and a whole host of other emotions mixed in. I felt let down, abandoned and resentful. That all had to be worked through. It was hard and it all took time to get to here where we are now. Mine is not a 'normal' situation. But I have decided we will carry on and make the most of what is here and see where it goes. I have not been good health wise this past 12/18 months or more, still ongoing. But frame of mind, mind over matter type thing is winning through. Instead of being overwhelmed and deserted I am taking control and just getting it done. We all have to find our own way through it. There is no 'one size fits all' with this. There are things that link us all together, but in the end its different for us all. We have to find a way through that means we are still in the room .... not forgotten.
    and remember .....We all do a darn hard job, we give up a lot of ourselves to do this.
    and the best we can do IS good enough. We are amazing because we care.
     
  13. White Rose

    White Rose Registered User

    Nov 4, 2018
    123
    I'm so impressed that you can do this, especially if you're not in good health yourself. I too feel abandoned and resentful, I don't think I'm cut out for this but am trying to do my best because of love for the person he was and I don't see a way to leave him, there's no one else to look after him (certainly can't see his children doing it!). Nice to hear your story and good that we have the forum to let of steam and know that others are going through similar issues so we're not alone!
     
  14. Justmary

    Justmary Registered User

    Jul 12, 2018
    66
    Female
    West Midlands
    Silver'lantern I'm so glad that I read your post. "We all do a darn hard job ... and the best we can do IS good enough." I must try to remember these wise words more often.
     
  15. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    Family worries bring home how much we have lost. We are no longer 'a couple' we do have children together.
    We have a Son and his Family that live in the fire zone raging in Australia at the moment.
    Whilst it has been mentioned, as he has seen it on the news, no great detail has been talked through. He doesn't do detail, He asked basic....'how close to is that' and was satisfied with the answer. I truthfully said far enough away. He is a little mithered about it all. But I don't feel I can let out all the turmoil I feel right now. How I am constantly searching for updates and news, my thoughts are my own, This is the bit I get upset about. The disease has taken away our companion conversation, our time at the end of the day to discuss the day and family, any little worries, the empathy to understand, and anything I do say turns to the look of despair on his face as he can't quite process what I have said nor find the words to reply.
    I miss the 'hows the kids' ....'have you heard from.....' sort of conversation.
    I have to edit.....not totally censor but edit a lot out, and say it in one simple sentence. Each time I do I wonder how far to go, how much does he need to know. I leave him to process it then he might be able to ask again to clarify or extend to fill in his gaps. one sided 'conversation' to fit his needs.
    The disease robs us of companionship. When companionship was our only link its hard to hold on. Its like holding a greased pole.
     
  16. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    280
    This is all very familiar to me, and I don't know about yours but my ACs also very concerned about genetic links and that this could be their fate too. We can only hope for a cure.

    "others will accept the diagnosis, but deny any of the symptoms"
    Interesting comment as I think this is mine, he has always been quite willing to acknowledge his dementia but was not upset in any way by the diagnosis and seemed to think as long as he 'felt fine' that was OK even as his abilities gradually diminished, and seemed to have no awareness of the future that awaits. Perhaps this is a blessing.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,786
    Female
    South coast
    This made my heart ache. I am in exactly the same position
    I have to edit.....not totally censor but edit a lot out,
    I do the same and I am having to acknowledge that he wont tell me things that have happened, or stuff that people have told him - even if its important.

    No wise words - just a virtual hand held out in empathy and solidarity
    xx
     
  18. silver'lantern

    silver'lantern Registered User

    Apr 23, 2019
    180
    Female
    exactly the same @canary
    and asking what? who? when? just sends in the confused look.
    Yet he can hold a conversation....and goes to 'work' one afternoon a week (local charity shop do supported access) But dont ask any questions when he gets home.....I get the vacant smile. The switch off begins and he hunkers down to recover. the side no one sees.
    then there is the
    "oh he must be ok if he can go doing things like that"
    i have even had......
    "if he can do things like that is makes you wonder if he is putting it on"
    ermmm...really!?
    this is my support network talking! (invisible family) o_O:confused:
    (they have no idea ......smile and nod...smile and nod
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,786
    Female
    South coast
    Oh yes. OHs GP is convinced that I am exaggerating, or that he is manipulating me into doing things for him.
    It doesnt help that OH is convinced that he can do everything and that I am trying to control him

    sigh...........
     

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