6 years and counting..........

Discussion in 'Younger people with dementia and their carers' started by MrsP, Jun 30, 2010.

  1. MrsP

    MrsP Registered User

    Mar 19, 2005
    Hi All

    It's now 6 years and 12 hours since my Dad phoned me with his diagnosis. I saw him at the nursing home this weekend as it was his 57th birthday. I think he must have recognised me as he immediately started trying to eat my fingers (I'm the chocolate giver!!). He is now late/end stage (not sure what the difference is)and has been immobile for the past 2 years. He used to be a company director - his company paid for a fantastic new wheelchair for his birthday (with a hefty price tag). Shame the staff didn't think to put him in the chair for our visit, and where too busy while we were there. Despite being so dependent he is still in good health - there seems no end in sight, which sounds cruel but I'm sure people know what I mean. He has no speech other than 'yes' (inconsistently) and the occasional profanity, but just yells extremely loudly which makes it uncomfortable to sit too close for too long.
    One saving grace - I played one of the Terry Wogan 'Janet and John' CD's - he giggled all the way through, mainly because everyone else was laughing and he joined in but it was still nice to see him happy.
    My most sincere thoughts are with all of you going through this, at whatever stage.

    Kate x.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    This is all so painful for you Kate.
    Your father is still young and the dementia has not yet taken it`s toll on his physical health, apart from his mobility, so he could live a long time in this condition.
    It sounds as if you wish the staff at his care home were more sympathetic to his needs. It makes it even more painful.
    But you are still bringing some joy to his life with your visits, your chocolate and your CDs.
    Take care xx
  3. sunray

    sunray Registered User

    Sep 21, 2008
    East Coast of Australia
    So sorry to hear your Dad has dementia at such a young age. My husband has moderate vascular dementia aged 67 (diagnosed five years ago). My Mum who has had dementia since her mid-seventies is 92 tomorrow, no speech etc for three years and a heart that keeps her going.She has been in care for eight years now.

    Whatever age our loved ones are the journey is so sad and so hard on those who care about them. I hope it helps that we are all in this together and do understand.

    (((Hugs))) from Sue.
  4. Norrms

    Norrms Registered User

    Feb 19, 2009
    Torquay Devon

    Thank you so much for sharing that with us Kate, you are such a brave lady, i wish you all the good fortune in the world, best wishes, Norrms and family xxxxxxxxxxx
  5. MrsP

    MrsP Registered User

    Mar 19, 2005
    Haven't been on the site in a long while -just been browsing and found the photo competition. Have uploaded 4 pictures which I hope will be approved. They are not all from the last 12 months I will admit but they mean a lot to me so I don't mind sharing them.

    Not sure that I'm terribly brave, but I keep on plodding on! I don't cry as much as I used to, sometimes I feel that I should but I've gradually leaned acceptance.

    Kate x.
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    12 years but I think I'm losing count :p

    Dad was 54 when diagnosed he's 65 now, my fingers tell me that's 12 years, though I get confused as 65 - 54 = 11 :p

    Your Dad sounds a lot like mine Kate, but its been quite a few years now since he just said in his case 'No'. I also empathise with the care home staff not quite getting what could make everyone feel good.

    I am also a chocolate bringer, and I am never happier than when I can get Dad chuckling about something.

    I miss him, I love him, I wish it were over, I don't want him to be gone. I'm 35 years old, and although for the last few years I felt like I could barely remember who Dad used to be, its all starting to come back now.

    I made a decision two years back, to start living my life again like a normal person. I don't know if it was the right thing to do, but I did have a one sided chat with Dad explaining to him how I thought that maybe he wanted me to live again. He didn't yell so I think he agreed, and he only smiles and laughs when he sees me, so I still am thinking I am doing what makes him happiest.

    Its a ruddy long time, and especially so when your own life hasn't been that long. Dad's had dementia for over a third of my life! You will keep getting stronger though, you do tend to cry less, and as I said above, the good memories eventually return.

    I can't believe I finally accept it all, but there's not much choice eh? Our Dad's would be proud of us, and quite possibly for brief moments of the day, are proud of us. We've stood by them and loved them. We've done our best.

    I'm hoping there's an afterlife so that one day when I'm old and gray and pass on, I get to meet Dad again and he'll be able to be himself and god that will be wonderful.

    If you ever need to chat and get out the frustrations of how long this disease goes on, feel free to pm me. I know exactly how that feels, how wrong it sounds, but how completely understandable it is.

    Best wishes,
  7. florence43

    florence43 Registered User

    Jul 1, 2009
    Me too!

    Hiya Kate,

    I'm 38 and my mum's 66. She was diagnosed 7 years ago. I've asked this question before and it was before we got to the stage we're at now. I know I wanted clarity, control, to be able to plan & prepare, but I got the same responses, (obviously!). There seem to be so many variants, and now I've read the replies so far, I've gone and got all despondent again.

    I feel awful for saying that but it's unbearable that mum may have to cope with this for much longer. She's also at the late/final stages (I also don't know the difference!) and 3 weeks ago we were told to expect the worst when she was in hospital with a UTI. I was ready. Then she moved into a nursing home on an emergency placement. I was still ready. I was in that limbo of waiting and preparing.

    3 weeks later, she's ok. Not really ok because she can't talk (hasn't for 2 years) is doubly incontinent, immobile and eats mush and drinks through a straw. In my book, not all that ok, but the panic seems to be over. The NH said she wasn't on end of life care (in fact, she laughed when I asked and said "...oh no dear,she's far too young...").

    So I'm presently going through a strange and guilt-ridden disappointment. How awful? But I'd been ready. I suppose mum's not, and I don't want to lose her (although I already have). I don't want to have to say "my mum died", but when the inevitable is screaming in your face, it's really hard to ignore it.

    So just thought I'd say hi, and that I do understand your feelings and I do wish there was a simple graph that showed stages and timescales! Then we could say goodbye before it's too late.

    PM me anytime too!


    Annie xxxx
  8. MrsP

    MrsP Registered User

    Mar 19, 2005
    Thanks for the messages - I don't come on the site very often so sorry for the delay in response - I will indeed pm you both, many thanks.

    Kate x
  9. katherine

    katherine Registered User

    Sep 5, 2006
    i've not been on here for ages either. I am totally with you all though. My mum has been diagnosed for 7 years. No speech, can't walk unaided - doubly incontinent etc etc. It's not the times of crisis that are so hard but the huge expanses of time in between when nothing happens. What Nat said about moving on is so right and important - i agree and everyone has to move on as much as possible and i'm sure our parents would want us to but it's hard to completely - you can't completely until it's all over and when will that be? I want it to end so i can miss my mum properly and remember her for who she was - not just be stuck in a difficult and depressing present. But there is life outside this and you have to get it while you can. Phhheewwweeeeee it's tricky.When it's over i'm going to get so drunk and then take my family around America for 6 weeks. Blow away the cobwebs - and remember my beautiful mum for all that she was
    from another Kate x
  10. Rosie

    Rosie Registered User

    Jun 10, 2004
    South East Wales, UK.
    Reading all your postings about your mums & dads being so young & having AD, my mam was diagnosed she was just 59 yrs old, she passed away last year, she was 70. It is terrible, terrible disease, so very cruel & i can understand all your feelings & comments, you have just got to take things day by day, & keep hoping & praying that one day they will find a cure for this cruel, cruel illness. Keep posting & logging on ( when you have five mins), i have always found this site so helpful & a lifeline that we could all do with during dark times, take care all, Rosie x
  11. lorrainet

    lorrainet Registered User

    Sep 17, 2010
    im sad reading your thread i felt all of those things with my dad. i used to look at him and think how much more can he take. i lost him 4 weeks ago i really miss him and like you i hope there is an after life so i can see him again. stay strong thinking of you x x x
  12. audi2

    audi2 Registered User

    Oct 9, 2010

    I hope I have your strength and acceptance. Mum was only diagnosed recently and this is all in my future but I hope I can deal with it with the dignity that you all show..one step at a time, one day at a time.
    Love and light
  13. piedwarbler

    piedwarbler Registered User

    Aug 3, 2010
    South Ribble
    I'm 45 and my mum is 79 - older than lots of you - but I still feel so many of my friends are still enjoying their mums' company and I have been caring for my mum for the last 20 years, 8 of them with dementia symptoms I believe, though still no firm diagnosis (Psych nurse booked for Monday to complete assessment).

    I identify with so many of the comments on here about wanting to know when the journey may end. I want to pace myself, but don't know how to start when it could be another 5 years or tomorrow.

    I do feel for everyone on here. I wish I could see into the future sometimes but I think it might scare me to death. Maybe on the whole it's better to take one day at a time and at the moment that is all I can do.

    Love to all xx Pied xx
  14. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi All

    I'm 52 and we celebrated Mum's 80th birthday in March. Mum was diagnosed about 8 years ago and is now doubly incontinent, has a neck brace on after a bad fall, and although she still has speech, not much of it makes any sense. We just try to make a sentance out of the words (or non words) that she says and just reply as best we can.

    This forum is a life saver - how else would we know that we're not the only one with these thoughts. Thank you Annie.

    Take care everyone


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