1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    just wrote up the diary entry for today:

    Easter Sunday. Quiet on the roads to and from the care home. Hot day.
    These days, Jan holds her neck stiffly back as she lies on the mattress. Her face is very lop-sided, with her tongue seeming to be causing her problems. It is really heartbreaking and there is nothing I can do to help her.
    I try sitting her up against me, but she quickly tries to get back down into a reclining position. Then she tries to turn over to get up and she ends up face down on the mattress. She can no longer get to her knees even part way, even with help from me. She shows no recognition of me, or of anything that I do, that I can understand.

    :(
     
  2. Tina

    Tina Registered User

    May 19, 2006
    420
    So sorry Bruce, I know it's difficult to watch, and even more difficult because you want to help but can't.
    Thinking of you and Jan.
    Tina
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    So sorry Bruce, it`s such a long slow decline and all you can do is watch.
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Bruce, that must be heartbreaking for you. But you can't know that Jan doesn't recognise you, or hear what you say.

    They say hearing is the last sense to go, and hearing your much-loved voice must be giving her great comfort. It's really all you can do for her now.

    I have so much sympathy for you. I hope you'll allow us to give you the support you give us.

    Love and hugs,
     
  5. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Hazel is, as ever, right! Jan may well be hearing you and sensing your care even if you get no feeling of it yourself. Take care of yourself, and try not to worry too much about one day. Things may look a little better another day. Deborah
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Tina, Sylvia, Hazel and Deborah,

    thanks! No matter how long this thing goes on, and we think we have adjusted, it still hits us of course, the sheer frustration of being able to do so little.
     
  7. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    that's it though - we just dont know what they do know. Is the touch of our hand, the sound of our voice, the warmth of our hug, our kiss, different to that of a carer? Recognition doesnt matter really does it Bruce? Might be nice for you, for me, to feel that we are significant to Jan and mum still - - but makes no difference, cos you will go on loving Jan and being there for her - cos that is what the love between you drives you to do.
    Dont know why I wrote this really.
    Love Helen
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    perhaps because you are demonstrating just why TP is such a powerful thing, it helps people.

    thanks, yes it did help me !
     
  9. annesharlie

    annesharlie Registered User

    Brucie

    I cannot imagine how difficult this must be - I am sure like looking at an empty shell of what Jan used to be. You've seen so much of her vanish, it is such a cruel disease. Sorry, I'm not being a help, just actually feeling so sad for you, and really touched by your gentleness and very obviouse love. I'm not sure I'm as noble a person inside - I fear I may be fed up with it all and want to run away from the situation!!

    Hang in there.
    Anne
     
  10. SusanR

    SusanR Registered User

    Apr 29, 2007
    19
    WisconsinUSA
    A visit

    I've just come from visiting Rich and it is getting more difficult for me each week. He smiled today so I know he knew 'me', but the only thing he said I could unerstand was "f___ you' when another gentlemen yelled at another lunch table. I truly don't think he would notice if I never came again, but the caregivers would, so I think I go 'to be seen'. Next week is a week off as I will be in LasVegas celebrating my birthday!!

    Thanks for listening and understanding.

    Susan
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    Dear Susan, you have to visit for your own peace of mind, not just for the care givers, but could you shorten your visits to make it easier on yourself.

    Meanwhile enjoy Las Vegas and have a wonderful birthday.
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Susan

    it is so difficult isn't it?

    We can't truly know whether they know us - but their brain and body won't permit them to acknowledge us in a way we can understand - or whether they have no idea whether we have visited.

    I always reckon that I have the choice - I can visit, or not visit. My Jan has no choice, she is being destroyed by this horrible dementia.

    So I really don't have a choice. We always shared everything and we signed up for good times, bad times, so I'm going to share some of the bad, even if my doing so can't relieve her of her bad.

    She can't acknowledge me but if I choose to believe that she knows it is me, then who does that hurt?

    What I do know is that it would hurt me immeasurably if I didn't go and see her.

    Every so often I get a glimmer of the Jan I knew. Always it is unexpected. If I wasn't there on the day it happened, then I would have missed something that is, for me, awesome.

    But we have to have vacation breaks to re-charge - I've just returned from one myself.

    Enjoy Vegas and your birthday!
     
  13. SusanR

    SusanR Registered User

    Apr 29, 2007
    19
    WisconsinUSA
    A visit

    Brucie - I do visit for me mostly, I know. My 28 year old son was married in Mexico on March 2 and 29 of us went down and were pampered for a week - just the most wonderful time. When I got home, I hit the wall that I had not hit for these nine years and just didn't go for two weeks. As I was talking myself out of my funk, I knew it had to start with visiting Rich. I shared stories and pictures and it was just so damn unfair that he couldn't have been with us. He does not deserve this.

    My visits are short, usually no longer than an hour. He had pneumonia about a month ago and hasn't been able to walk unaided since. He is in therapy and trying. He had spent a good part of his former days there walking the hallways. I look forward to some warm weather so I can wheel him outside for some fresh air.

    Now that he has gone over where he is not as aware of his surroundings, this disease is harder on those left behind. I had thought when this time came, it would be easier for me. It doesn't get any easier at all.

    Susan
     
  14. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Susan, enjoy your break, you need it.

    No it does not get any easier, but as Bruce says "We have the choice" they don't

    I think I visit more for me these days, because I need to feel I am still doing all I can for Lionel. Does he know me?

    Today I whispered "I love you" and as clear as anything he replied "I definitely love you". First words I have been able to understand in ages (except the swear words of course)

    I feel happier tonight.
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Connie, with all his problems, Lionel is still a very lucky man to have you. Some folks go all their lives without meeting the special people like you. You light up every room you enter. Bless you.

    Susan, I reckon 45 minutes is about the most useful span of time for me to be with my Jan. Bit of a nuisance as it takes me an hour each way to get there and back. If more than 45 minutes would work, I'd do it, but Jan has lost me in as much as she has found me, in the 45 minutes. I count myself lucky to have so much time with her. It won't always be.
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    Dear Connie, that`s the first post for days, where you`ve had something positive to report from Lionel.
    I`m sure you feel happier tonight. I feel happier for you.
    With love
     
  17. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    Las Vegas

    Susan enjoy your holiday . i went there with my husband before he started on his downhill path, I was celebrating my 70th Birthday and I loved it . it is like disney land for adults.

    Love Cynron x x
     

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