How long can my luck last?

Discussion in 'I have a partner with dementia' started by Agzy, Jun 29, 2018.

  1. Agzy

    Agzy Registered User

    Nov 16, 2016
    839
    Moreton, Wirral. UK.
    it is almost 3 years since my OH was diagnosed with Alzheimer’s and having gone through hell for 2 years prior it came as a relief to be honest. Having read this forum and other sources I immediately got the house and garden trip free and bath to shower room. Along with this a pendant alarm for use in the house obtained but has never been used.
    Doneprisl seems to be the answer to why, as it seems to have eliminated most of anger issues and really slowed down the short term memoriy issues. All this, along with help from my family and a brilliant neighbour, has allowed me to have holidays abroad travelling solo as she is adamant she will never do so again. Along with this I have taken up golf again as respite time from endless watching of old time TV favourites as that is how she spends her days.
    I know it must change and the disease will progress but when and how are questions that seem to have no answer but are tormenting me as it all seems to be the opposite of what I read here where most seem to have progressed relatively quickly to the ‘24 hour care level.’ Has anyone else had this kind of experience or, dare I say the word, Luck?
     
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,454
    Female
    England
    #2 jaymor, Jun 29, 2018
    Last edited: Jun 29, 2018
    My husband functioned very well for 4 years after his diagnosis. He continued to drive and run his company. He was prescribed Aricept and although there were some difficult times, mostly it was manageable and we had holidays both abroad and here and a fairly good social life.

    It was year five when things began to fall apart and we really knew we were living with dementia and it was now ready to take everything from us.

    My husband had alzheimers for 11 years diagnosed and possibly 2/3 years before diagnosis when we put poor memory down to the stress of his business.

    we took it a day at a time and dealt with what came when it came.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,437
    Female
    Dundee
    I know it can be a real torment wondering about the years ahead. Having said that I would definitely say make as much of the reasonably good times you have and do try not to think about what may be ahead of you.

    You sound as if you have made really good preparations so that you will be ready when things do start to change. My husband had Alzheimers for 15 years after his diagnosis and I believe that he had it at least 2 years before diagnosis. We carried on going on holidays and going to the theatre etc etc. As the years went on things became increasingly difficult but I always looked for a way to keep doing what we enjoyed. Of course it was hard and of course it was difficult but I feel I was able to enjoy the time I had with Bill before things became really bad. He died 2 years ago come July and I don't regret making the most of things when I could. I really urge you to do the same. You know that TP is always here for you as the changes come along. It's that age old saying I suppose - one day at a time.
     
  4. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    It's so different for each person-which I know doesn't help. My husband was diagnosed 10 years ago -when 58. He was able to stay at home with me for 8 years but has been in full time care for the last 2. With hindsight( that wonderful thing!) I maybe should have listened to friends/family and arranged a care home for him earlier -but I wanted to be sure I had done all I could. He now seems to be getting close to final stages...but can vary from day to day, so who knows? Just enjoy what you can...but look after yourself as well.
     
  5. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,650
    North West
    My wife's dementia lasted for at least 15 years (it's difficult to be sure when it began). She was only in a care home with nursing for about 15 months. Aspiration pneumonia was assumed but the actual death certificate says 'exact cause of death has yet to be ascertained'. Her body was sent for several weeks to another hospital and then returned. We were told it could take 6 months to get a firm diagnosis!
     
  6. Agzy

    Agzy Registered User

    Nov 16, 2016
    839
    Moreton, Wirral. UK.
    There is nothing simple about this horrible disease is there? Since last year when she said no more caravanning after sharing it with me all over Europe for 24 years, I have had 2 solo holidays and am torn with guilt although she laughs and says, “just enjoy it, I’m happy at home and I dont need care yet.” Reading your stories I realise she is right and I shouldn't feel guilty, providing I do all I can to ensure her safety and care and I should live my life while I can. This year was taking the caravan solo to Spain in Jan/Feb, regretting talking her into coming to Holland in it with me for April (something we have done for 10 years) and just 2 days ago I came back from a bucket list coast to coast coach tour of Canada, which was mind blowing but caused the biggest guilt trip. Thank you all as knowing others have had similar and non as yet condemned me is a big lift. Cheers!
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Well done @Agzy
    I am so pleased you have overcome your reservations and are enjoying life while you can. Long may things continue like this x
     
  8. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,487
    You go @Agzy I wish I could get away. You make the most of it while you can and don't feel guilty.
     
  9. PalSal

    PalSal Registered User

     
  10. PalSal

    PalSal Registered User

    Yes,@ Agzy go and enjoy. Its hard to leave em but it will do you good
     
  11. Agzy

    Agzy Registered User

    Nov 16, 2016
    839
    Moreton, Wirral. UK.
    Again thank you, I needed a boost as guilt hit me for no reason on getting back home. Feel a lot better now.
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,325
    East of England
    I absolutely agree with your decisions. I am in a similar situation but we can still go together with the usual reservations that @Izzy has mentioned. Donepezil seems to be helping as far as one can tell but I am already thinking that one day he may not be able to come and what would I do. You are a wonderful role model for carrying on as best one can. My husband is approaching 80 and has rapidly deteriorated over the past 6 months, so it has been a big shock that I am now more used to, thanks mostly to TP.
     
  13. Agzy

    Agzy Registered User

    Nov 16, 2016
    839
    Moreton, Wirral. UK.
    I am 76 and Pauline 75 and other than the Alzheimer’s we are both fit and able for caravan/fly holidays but she just doesn’t want to leave home and her beloved TV where, as we are on cable, she can record 6 channels at the same time. Being away means coming back to innumerable recorded programmes so it is a relief for me to travel on my own. I am now in process of planning 6 weeks in Spain with caravan from October to mid November as I am presuming that a traumatic decline in that time scale is unlikely. So sorry about your husband but agree about TP a informative and sounding off board in one place.
     
  14. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,487
    Wow just grab the chance and go. Wish I could.
     
  15. Agzy

    Agzy Registered User

    Nov 16, 2016
    839
    Moreton, Wirral. UK.
    Thank you, it is so strange to have support for what seems like a selfish act and yet even this evening Pauline is helping withe planning so, as you say, why not? Benidorm here I come (its the karaoke my favourite pastime while there) and looking to sail at beginning of October!
     
  16. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,760
    Salford
    It is the ultimate "how long is a piece of string" question. My wife was diagnosed quite young (mid 50's) but there had been something wrong for some years before that that the doctors had passed of an the menopause, children leaving home, depression, a thyroid problem she had...anything but AZ, that doesn't happen to people so young, since then I've found out we're far from alone.
    The problem with my wife was her declines were episodic, she went from being continent to incontinent is a day, one day she went to the bottom of the stairs, stopped and wet herself, since then she never remembered to go to the toilet again.
    Likewise she went from being nice, friendly and very compliant to aggressive and violent in a matter of days, short outbursts that soon ended to full blown violent, one time taking 2 of my teeth out with a tin of beans. it ended up some moths later with paramedics and the police in the house and her getting sectioned.
    I managed 8 years, coping alone before it became too big for me to manage any longer and after 6 months in a secure unit I agreed for both of us the best move would be full time care.
    When I speak to friends and family it does seem to me that people diagnosed at an older age do seem to have a gradual decline, younger people do change more quickly.
    My wife would never let me out of her sight so going into another room wasn't an option for me let alone going on holiday so if your wife's able to agree then go you might not get another chance anytime soon, just don't book anything you can't cancel if things change.
    K
     
  17. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    Exactly - have a wonderful time - not all of us are so blessed, but we send our love and good wishes to you all the same - the horrid disease is so unpredictable.....
     
  18. member74974

    member74974 Registered User

    Jun 30, 2018
    41
    You make me feel a bit ashamed. My husband has real problems now, but hasn’t had a diagnosis yet. We are going abroad in a few weeks. I wanted to change it to this country, because I’m nervous of coping when he’s not feeling good. He wants to go, saying it might be the last time we go abroad. And you all just go ahead! I’ll keep thinking of you all.....
     
  19. Agzy

    Agzy Registered User

    Nov 16, 2016
    839
    Moreton, Wirral. UK.
    Earlier this year Pauline asked me if I had booked our annual caravan trip to Delft in Holland and when I said no she was upset and demanded I do it. I reminded her that she wanted to give up caravanning and she said not Delft though so, as usual, I booked it for a full months stay and off we went via Hull ferry. It is only a 1 night crossing but she got a bit upset as all TV screens on mute in the lounge. Once in Holland priority was getting satellite dish set up for her TV channels and that was it, she hardly came out of van, never mixed even though we were with friends and once home told everyone she loved it but told me, never again but we will see when next I plan a caravan trip on my own. The ultimate excersize in diplomacy every day but somehow keep smiling and yes, be a little selfish!
     
  20. member74974

    member74974 Registered User

    Jun 30, 2018
    41
    Well, it’s paid for, no refund possible now. And it’s an early stage, so I’ll go along with it this time. It’s not a month, just a week. We’ll see.....
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.