Younger people with alzheimers

Discussion in 'ARCHIVE FORUM: Support discussions' started by matrix45, Nov 25, 2005.

  1. matrix45

    matrix45 Registered User

    Nov 25, 2005
    6
    cheshire
    Hello,
    I have never posted here before but my wife is only 59 and has had to move into a nursing home because her alzheimers is so bad that I could not cope any more on my own at home. - she is peg fed and can`t stand, walk or speak - she needs to be turned every 2 hours and it takes 2/3 people to turn her because she is afraid to be moved.
    I am so guilty that I can`t cope and I miss her so much, How do you cope with losing someone you have known and has been your life for more than 40 years - I am having major problems adjusting to where we are now. - Any help would be welcome
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello matrix45, and welcome to TP

    I fear that yours is not an uncommon story.

    My wife is just 65, but started her symptoms aged 51. Like your wife, Jan is in a care home, can't speak, see or walk, is losing ability to crawl. At least she eats well, when fed by somebody.

    Please forget any guilt! We all do our best, but for all of us there will be a stage where we can no longer cope. For some that comes sooner, for others much later. For some, the stage is never reached as the loved one passes on first. Thee is no shame in handing over to those who can help them better than we are able.

    The difficult part is accepting our own limitations, given our desperate need to help someone we have known for so long. It helps if we can readjust our expectations, readjust the way we see our spouse, and carry on in a new way. For you this will be difficult, given the circumstances, but I always think that my wife is in there somewhere. I may not be able to detect that she knows I am with her, but that may be due to my own shortcomings. I believe she knows, and that is enough for me.

    Time helps us adjust, as does trying to restart one's life in some way, even in a small way. Yes, we miss them always, and there is little we can do about that.

    Having someone to talk to is a help, and TP is an amazing community of people who understand your situation. When other things fail, post your feelings, doubts and despairs on here. We're all in the same boat, you see.
     
  3. matrix45

    matrix45 Registered User

    Nov 25, 2005
    6
    cheshire
    Thanks Brucie,
    I know deep down that there is little I can do to help her but I visit everyday and it breaks my heart to see how she is some days - then she smiles at me and I know she is still there. - it doesn`t help me to adjust but at least I feel i am doing something.
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    and that is what counts.
     
  5. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    hi ,just want to say ,i understand the guilt feelings ,its something we live with ,even though we know we have done all we possibly can ,your wife is so very very young ,how long has she had the illness?my husband was allso young ,just 55 when diagnosed ,i cared for him single handed ,till march this year ,when he was taken in hospital ,with a stomach infection , he was then transfered to an assessment ward and i was being urged to consider a nursing home ,i was resisting this but he had mini strokes while in there ,and died , now i feel the guilt for letting him go into assessment ,and it does not get any better ,though he was in the same state as your wife ,at the time ,you will get help from posting on TP and just knowing that others have been exactly where you are now ,i hope you have family to support you through this ,stay strong .ANGELA
     
  6. Robert

    Robert Registered User

    Feb 25, 2005
    44
    Hello Matrix45,

    I was so sorry to read your sad posting, plus Brucie's and Angela's replies. I often wonder how we cope with such tragic events, I suppose it's because there is no choice.

    The description of your wife's circumstances are mirrored by my own wife's situation. I also visit the care home every day for around 5-6 hrs and feed her at mealtimes. I want to be with her as much as I can and as long as I feel I am supporting her, my life has some meaning. I look forward so much to visiting and hate it when I have to leave her. AD has taken over both our lives.

    I wish I could offer you some advice, but unfortunately I have none to give, because like you, I am finding it hard to cope without my wife. I have read that we should find some interest outside AD to prepare for the future. But I do not have the time or the inclination. I can not imagine engaging in any pleasurable activty knowing my wife is confined to the care home. So I live for now, the way it is.

    It is often said that time is a good healer, but I believe there is a direct relationship between how much we love someone and the time it will take to grieve if we loose them, so for me not much hope in that direction.

    I don't want to end on a negative note, I've just said it the way I feel. As many others have said on this site before, it does help to post and I second that, you know we are not alone with this dreadful disease.
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    That is certainly true, and I've been grieving for 15 years now with no faint idea of how many more years will be involved. However, the course of the disease and its effects, the time involved, the wear on the person caring... all these things lead either to a breakdown, a totally solitary and exhausted, miserable life, among other things.

    I thought as you express yourself. Nobody had the relationship that Jan and I had/have. But over time, she has lost more and more faculties, and while I still visit most days, I have reduced the duration of my visits as she 'loses' me [if she has even registered me] after 30-40 minutes.

    I found that originally, I stayed longer then realised that was more about me than her. I needed to be with her, to share in some way her torment. She would get agitated if I stayed too long.

    We've been together 40 years now, 37 married. You don't - can't - write that off. Neither can you dust off your hands and say "that's it then, she's no longer the person I knew, so I'll stop and make a new life".

    All you can do is what your heart and circumstance tell you. My heart tells me to keep on visiting until the end. My senses tell me that Jan does not gain if I stay longer than she may want, or if I centre too much of my days to doing that - 50 miles a day of driving to the home is wearing in winter time.

    And dangerous. I took the vicar to see her last week and just managed to miss a white van that came around a corner on a narrow road, on my side. Missed another one a couple of days later - he was again coming around a corner in the middle of the road, but was steering one-handed as he was on his mobile at the time.

    Hearts are much bigger than we give them credit for. It isn't impossible to make a life yet more complex by unexpectedly finding someone else - and that does not mean that one loves the person with dementia less than one did - or less than someone else who has not been on the path so long, or whose loved one is not yet at a certain stage, or who has made a decision to devote the rest of their time to them.

    There is so much hurt in this dementia business. Time does not heal, but it changes things, and that is something we have no control over.
     
  8. Robert

    Robert Registered User

    Feb 25, 2005
    44
    #8 Robert, Nov 28, 2005
    Last edited: Nov 28, 2005
    Hello Brucie,

    Thank you for your reply and I appreciate the wisdom of it. I also repect your views based as they are on your experiences with Jan's sad situation. I can't begin to imagine the agonies of mind you must have endured during the course of the last 15 years.

    Yes, there is an element of my needing to be with my wife, after 46 years together I now feel as though I've been chopped in half. In a strange way, even though I was the carer, her presence gave me confidence, now that is missing.

    I accept (as you point out) over time much will change and I don't much fancy the prospect of a breakdown or the total solitary exhausted miserable life option, you identified either. I've read your post to me and that to matrix45 a number of times and have to say, you make a lot of sense Brucie. Thanks again.
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Robert

    I've found that the only thing is to to take each blow on the chin as it comes - with dementia, it does no good to try and duck them.

    As you say
    It is a hellish situation.

    Best wishes
     
  10. matrix45

    matrix45 Registered User

    Nov 25, 2005
    6
    cheshire
    I haven`t been on for a while but I have just read some of the replies and comments to my first submission from robert and brucie. I went to see my wife again today as I do most days and she didn`t recognise me but she was switching from crying to laughing and I thought that when she was crying it was because she did know something of where she was - The home is very good and they look after her in a very caring way but she is not with me and I think that is when she realises where she is and that I will be leaving her there.
    I could sit with her for hours but then she goes to sleep and what do you do then, I have taken up all the Christmas cards we have had from our friends and read them to her but she shows no interest - she looks past me and can see something I can`t - sometimes whatever it is frightens her but how can I help her when I cannot see what she sees. I am not looking forward to my first Christmas without her in over 40 years. she was a District Nurse so Christmas was for her patients first and family last but we always had some time at Christmas for us as a family and she always made it special when the children were young. She has been my life for so long that like Robert I don`t want a new life, I want my old life back with the wonderful woman I have known so long. My days are empty and have no purpose - how do you find something to look forward to in our situations
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    This was my situation back in 2001.

    I found that the years of caring for Jan had to an extent obliterated my memory of the happy times we had experienced together. I couldn't even remember if we had laughed together!

    So I made it an odyssey to plough through our extensive collection of pictures through the years - albums, shoeboxes of pictures that had not made the albums but that were now priceless treasure, many many 35mm transparencies, and even 8mm cine film [some of which I had converted to VHS].

    I scanned them to the PC, catalogued them by year, and event [holidays].

    I printed many as a collage on A2 paper and put that up in Jan's room at her care home. That helped me, and it helped staff to understand our life together.

    This whole process gave me a focus, and I re-lived our fabulous past together.

    Even today I use the pictures - I had a Christmas card from someone we met in Antigua in 1984. We have not met her since, and her husband died some years ago, but she remembers that holiday, and Jan, very well. I sent an update letter, with a picture of a group of us in Antigua.

    I have attached part of the picture below. Ethel
    is now close to 90 and bright as a pin. I look at the picture and I'm there again, with Jan, so beautiful and vivacious. "Another Planter's Punch, barman!"

    If you ever took pictures, use them now - they are an unique resource for you!​
     

    Attached Files:

  12. matrix45

    matrix45 Registered User

    Nov 25, 2005
    6
    cheshire
    Pictures

    Hello Brucie,
    You must be psychic - I spent most of this afternoon looking through the mass of old photographs we have and picking out ones that are of precious moments from when the kids were small and of holidays we enjoyed. We used to go to Tenerife and see a CW singer called Tom Keenan - my wife loved it. I picked out a photo of her taken with Tom on her 50th birthday and she looked radiant. I scanned it into the PC and printed off an enlarged copy which I took up to the Nursing home and it is now on a shelf by her bed where she can see it. Only a small thing I know but it gave me a feeling of satisfaction that she was still part of something. I will put together a slide show on CD of our life from the old photos of us and the family as a lasting record of the good times.
    Thanks again for your help.
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    well, not really, but I've been where you are at present, and the photo stuff [which took me the best part of a year... I have many, many pictures, and more yet unploughed through :eek: ] was what kept me going.

    Now I can look back at the pictures and, with the pain just a little less, remember how things were, to counter the difficulty of daily visits to the home.

    At the same time, I am also using photography to record a new life with a new family. Amazon delivered my latest digi camera today and its a corker!

    In a way, the photography still helps shield me from the nightmares I would have if I couldn't focus elsewhere.
     
  14. Robert

    Robert Registered User

    Feb 25, 2005
    44
    Younger people with alzheimer's

    Hello Brucie and matrix45,

    Yes I agree, sorting through photographs helps a lot by renewing memories of happier days with instant clarity and also blunts some of the rawness of the present situation, at least for a while. It has been my intention to conduct the same exercise, but I haven't progressed very far yet.

    I know that now is the right time to launch forth. due to a situation about 20 years ago when our much loved alsation died and I tried to collect all relevant photos together soon afterwards. I found that a particularly harrowing experience, much better to do it while we still have our loved ones.

    Thanks for sharing the photo of your Jan with us, she looks radiant and a picture of happiness.

    Best wishes,
     

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