1. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    Hello to you all,

    I am finding this post difficult to write but I need to know if anyone feels the same or if I am just abnormal.

    My husband has mixed dementia and it started to be very noticeable seven years ago, getting worse in 2015 when he was sectioned. Since then he has been in care in a very nice home and is calm and settled.

    We have been together for nearly 40 years and married for 35 but I I have problem in that I don't seem to be able to recall much of our life together before the dementia years. I find it very distressing that I can only see in my minds eye the man in front of me now and it is a struggle to think of the person that used to be there and the life we had.

    Is this normal? Does dementia seep into every part of us so that it overrides the life we had before or is it a coping mechanism that allows us to carry on? I really don't know. All I know is that when it is over I want to be able to think of him as he was and not the person I see every day now.

    Does anyone else feel like this?
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    My wife isn’t in a care home yet but I too can’t really recall her any way other than how she has been over the last 5 or 6 years since her symptoms started to come to the fore. I’m not sure I could cope so well with the present if my focus was on the past.

    I do know from comments made by other members that when the person with dementia has passed the good times are recalled.

    I hope it will be that way when my turn comes.
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    I find that I have to look at photos of dad to remind myself of the old capable and clever man who he used to be.
  4. Starbright

    Starbright Registered User

    Apr 8, 2018
    Hello, I don’t think your alone feeling this way as others have said. I too feel like you and over a similar number of years although my husband is not in a nursing home...what I have found is that sometimes I get a flash of him when he has a lucid moment and that’s comforting...I’m sorry I can’t be more help.

    Thinking of you Ax
  5. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    I too struggle to remember how my OH was before dementia changed him.
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    mmm @Unhappy15 I wonder whether it's a coping mechanism too
    I found some photos of my dad on my mobile, from only a year or so ago, and was upset at the difference, so maybe it's best to just deal with the present
    I keep meaning to sort out old photos but keep putting it off, maybe that's me trying to save myself from more sadness
    but when I come across some of my mum, who died 10 years ago, they are a pleasant surprise and make me smile - it's as though the few years of her final illness have been placed back into the perspective of my whole life of knowing her
  7. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    Dear Pete, Duggies Girl,Starbright, Guzelle and Shedrech,

    Thank you so much for your replies, it is comforting to know you are not on you own. What what would we do without T.P. It is comforting to know your not alone.

    I must admit I have struggled with these feeling for some time and it has got to the point where I even doubted the real Joe ever existed, was it imagination. It seems incredible that 40 years just fades but I suppose your mind just take over to relive you of the rawness of constant grief.

    No one ever tells you just what you are going to have to come to terms with do they? We are just left to face all the struggles without a handbook,still I suppose if we knew at the start what lay ahead of us would we have had the strength to keep caring.

    Shedrech, I do understand what you mean about photos, we traveled quite a lot and I had two large crates of photos. I knew I had to get rid of some of them,( better I do it than leave it to someone else at a later stage) and it was dreadful going through them, I couldn't believe the people in the pictures were Joe and I. Looking at the man in the photo was like looking at a total stranger to the man I see now, its dreadful and disturbing.

    Thank you all.
    Kathy xx
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    I have just walked out of the sitting room to look at the computer for a few minutes and I came across this thread.
    Not 10 mins ago, I looked across the room at this old man sat nodding off and not understanding what was on TV. As I looked at him, I tried to remember the man who swept me off my feet only 8 years ago - and I could not see him anywhere......he has gone, and probably forgotten, until things change and I can remember the better times, once this nightmare is over.
  9. PalSal

    PalSal Registered User

    Dear TP friends,
    These are truly difficult feelings. I have now lived over 50% of our married life coping with the progression of the disease. I do try to stay in the present and this 24 hours.
    But I look at my history as a long term carer, although I am caring...I am not always loving. I loved this man so much, and I so rarely behave lovingly. I am efficient, practical and pragmatic, I supply him with what he needs food, drink, assistance in all things.
    I am going to try again to act as if I am "in love" with him. I want to remember the reasons I fell in love with him. It takes active focus for me to remember that our relationship was different. He was the kindest of men, a true gentleman, exquisite manners and considerate, intelligent and professionally powerful. For a long time I only felt anger and cheated our life.
    It is important for me to think about who he was, otherwise I deny his history.
    So, I have tried this before….and did not keep it up. But I am going to be affectionate in the hope that I can "fake it until I make it". I know why I have not kept it up in the past it is because showing affection makes me feel so sad, then I must take on all those feelings of loss. But he deserves it.
    Wish me luck.
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I just wanted to say that I know how you all feel. I'm in a different situation now as my husband died two and a half years ago. We were married for 38 years and he had a diagnosis for 15 of these years but things had started to change before that. I loved him deeply but I do know that our relationship changed as his dementia progressed. I was not always the loving, patient person I wanted to be. I was lucky that he remained loving towards me and although he may not have known I was his wife he did know me as someone who was important to him.

    Now things are so very different and I often wish I had him back. I then need to give myself a good talking to and remind myself that he wouldn't want to be back with all of the suffering and indignities that dementia brought with it. I go from still remembering the dementia years (there were so many of them) to remembering the wonderful life we had together before them. I have photographs of the two of us and of him all over my apartment. I never go away without taking a small photo album containing my favourite photos of him. I talk to him all the time.

    I'm sorry @Unhappy15 - this is a rambling way of trying to respond to your question-

    More and more I am thinking of how he was before things got so bad. I wish you strength and hope that sharing here helps you a little.
  11. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    Hello @Unhappy15

    I’m another one who found it easier to not remember how my people with dementia were before the disease took hold. I’ve now cared, or helped to care for 3. The first was my mum who died at the end of 2009. I really struggled to understand why she behaved the way she did,it was so unlike mum. By the end of that painful journey I had already grieved the loss of my mum so when she passed, although it was painful it was not nearly as painful as when my aunt, vascular dementia - mostly physical problems and only a small change in personality, passed away 2 1/2 years later.

    With dad, who passed away before Christmas, I couldn’t allow myself to remember him as he was before dementia really took hold. The reality of the change was too difficult to deal with while having to provide care and support for a really poorly person who needs you.

    On the night he died I dreamed about him as he used to be and woke up sobbing. When I think about him now it’s in the grips of dementia. I think it makes it easier to cope with the present situation. Even now I can’t think of him the way he was. Not yet. One day I hope to remember him as he was without pain.

    Sorry! I’m waffling. What I’m trying to say is I think it’s a coping mechanism - not remembering the person before dementia - to enable us to carry on. Perfectly normal..
  12. marionq

    marionq Registered User

    Apr 24, 2013
    I think it’s very brave of you all to talk about the day to day practicalities which it is possible to cope with and the emotional changes which are hard to bear. I have never been interested in any man other than my husband and we have had a very good life together but dementia has taken its toll. Yes I do all the practical stuff and I’m good at it but the despair of dementia years and the odd behaviour prior to that have made inroads into all the good years.

    Many of my husbands relatives have had some form of dementia which is worrying in itself but it is also helpful to me to see how their families have responded to them. I am no angel but I know that John could be much worse off without me.
  13. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    Basingstoke, Hampshire
    I guess that's how I feel, a coping mechanism is a good description. Having read this post I did try thinking about how he used to be and found myself pushing the thought away. I just didn't want to go there.

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