A few dark days. But I'm back...

Discussion in 'I have dementia' started by TEEDEE62, Nov 17, 2019.

  1. TEEDEE62

    TEEDEE62 New member

    Nov 5, 2019
    Hi, I've been off the forum for a week or so, my apologies for the kind and supportive replies.
    I'm not at 10 posts yet,so cannot reply.
    Last week as a very strange one for me, but I think it was part of the process of coming to terms with my diagnosis.
    We decided to let our families know (not my the youngest three), which wasn't an easy thing to do, but not as was bad as I thought......
    Then Monday came along, and with my kids at school and my wife at work I found myself in a strange place, knowing that my demise is going to be a lot sooner than anticipated..
    I couldn't focus on my basic daily tasks such as cleaning, laundry etc which and was getting a bit upset due to the real possibility that I'll not be there for their big occassions such as , marriage, graduation, my grandchildren etc.

    my wife and I had a long and emotional discussion about our thoughts around this, and thankfully, I think we are both in a better place now.

    we do understand that things may not pan as we would hope,but we should be able to talk to them about it and what to expect.

    I know that we aren't the first nor the last to go through this, but for us it has been quite a big step taking it all on board.

    thanks for your time and support. TeeDee62
  2. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    No need to apologise @TEEDEE62 I can imagine how difficult this is for you and your family.

    Plan for the worst and hope for the best as the saying goes. I hope you get the best.
  3. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    @TEEDEE62 I am glad that you and your wife were able to have a long and frank discussion about your diagnosis, what it means and how you might face it together.

    I found that being able to have these discussions with my husband when he was first diagnosed was a tremendous help to both of us because I had a clear understanding of his views on just about everything while he was still able to express himself - so I knew exactly what to do as issues arose, without the need to worry him further.

    It is also good that you have been able to tell people within the family - as they, hopefully, will also be a source of understanding and support down the years.

    None of us know what the future holds but there is opportunity ahead to enjoy many wonderful times as a family.

    My husband didn't see his children marry or have grandchildren - and maybe I won't either. However, he shared in our important anniversary and birthday celebrations, enjoyed family holidays while he could - and was there to see his children get through their exams, pass their driving tests, attend our son's graduation and daughter's 100th marathon achievement - and many more family highlights besides.

    Our plan of action was to take care of the practical paperwork first - then concentrate on doing what we could while we could.

    Despite the diagnosis, there is much to look forward to :)
  4. Arthur ASCII

    Arthur ASCII Registered User

    Jan 17, 2019
    Northamptonshire, UK
    LynneMcV is quite right. Get all of the tedious and costly paperwork out of the way, then sit back and enjoy the ride. Squeeze every last drop of enjoyment out of your life. It isn't over, it's just been better defined ;-)
  5. PJ

    PJ Registered User

    Jan 26, 2017
    Hi @TEEDEE62
    I totally understand how you feel. My husband & me were in the same place when I was first diagnosed. It’s takes time but you will realise that life does go on, it’s different but you can both make it the best you can. Sending big hugs.
  6. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    I agree totally, life is different but it’s still a life worth living. I look back now and think of all we did do after diagnosis.

    We never hid the fact we were living with dementia and this helped so much as friends and family understood that sometimes acting a little our of character was dementia, not my husband.

    We continued to holiday but we teamed up with my brother and his wife who were happy to come from Ireland and then travel with us so we still managed holidays abroad though they did come down to long weekends.

    When I look back I see all we did achieve, it took a lot of preparation and thought but that made it all the more special because we had done it despite Alzheimer’s. Not all goals have to be large ones.

    Trips out became visits to the good old garden centres, the bigger the better and they had to have a coffee shop, no day out was a good one without coffee and cake and friends appreciated the lovely ‘ garden ‘ themed presents they now got every birthday and Christmas.

    I can smile at some silly things that happened, things that my lovely husband would never have done before dementia. So it’s great @TEEDEE62 that you have talked together and the family know. Now you can do what you can, there will be a solution for what you can’t. That’s made me remember something that happened and made us both laugh. I had developed a very sore and stiff back and my chiropractor had said don’t stop your daily walks just be careful. I put my trainers on but could not bend to tie the laces. My husband knelt down and tied them for me. He then stood up and said ‘ that’s something you can’t do and I can’. That was our big smile for the day.

    Take care and keep doing what you can and keep coming to the forum, I could not have managed without the support and friendship of the community here, and 14 years later I’m still here.
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    brilliant choice of words!
    Just fine tune what’s really important to you & go for it!
    Life is for living my Granny used to say, & as she lived well into her 90’s I guess she had a good life experience of what’s important

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