My husband is 57 and been diagnosed with dementia

Discussion in 'Welcome and how to use Dementia Talking Point' started by Ferdreno, Jun 7, 2019.

  1. Ferdreno

    Ferdreno New member

    Jun 7, 2019
    1
    I am 55,I never thought at this age I would have to watch the love of my life go through such a difficult time.
    I have seen my mom, dad and sister suffer through cancer.
    This is a whole new disease.
    I have know idea of what Is yet to come.
    Any help, suggestions would be helpful.
     
  2. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    232
    Female
    Mid Lincs
    Welcome to TP Ferdreno. I'm sorry to read about your OHs plight.
    It's a very traumatic time but you have come to right place for support and understanding.
     
  3. Philbo

    Philbo Registered User

    Feb 28, 2017
    661
    Male
    Kent
    Hi @Ferdreno and welcome.

    I was 60 when I first noticed that my wife was having problems. It took another 2+ years of firstly trying to ignore it (she didn't see that there were any problems), then trying to get her to go to the doctors. Then finally, a diagnosis in early 2014.

    I remember the early months/year was a mixture of fear, panic, anger (why us?), sadness and I just wanted to run away! I found it very hard dealing with the fact that even though we were told what type of dementia she had (FTD), no-one could predict exactly how it would develop, or how long the journey would be. The words that stuck were "it is a terminal disease"!

    It has been described on Talking Point as "anticipatory grief", which is pretty much what you go through? I found that by reading up about dementia (something I was very reluctant to do, initially) and especially joining Talking Point, I have learned a huge amount about coping with my new role as a carer.

    You do not say where you are based but as well as searching out online information about dementia, seek out what support organisations are available locally. The single best thing I did was to find a dementia coffee morning nearby. Meeting other carers gave me the insight I needed to start my journey and helped me feel less alone.

    When and if you are ready to share more of your story, the lovely people here will be happy to help.

    Best wishes.
    Phil
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,803
    Male
    Bristol
    Welcome to the forums Ferdreno. Sorry you have had to go through so much pain over the years, and now have dementia to deal with you.
    Everyone is different, so just keep posting and reading. This is great place with so many who know what you will be going through, just from experience. There are helpful little things like asking your husband for power of attorney and getting a care needs assessment from social services as well as carers assessment for yourself.

    Type your town or postcode into https://www.alzheimers.org.uk/find-support-near-you to find memory cafes and advocacy services or any other local support you may need.

    https://www.alzheimers.org.uk/about-dementia/types-dementia will help explain some of what is happening.

    Good luck.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,187
    Female
    South coast
    My OH is 63 and my advice would be to make sure your husband has sorted out POA (both Health&Welfare and Finances) and his will. Because he was comparatively young he had done neither, but by the time you need them it is too late, so they have to be done early.

    We both did POA and wills together to make sure that OH did not feel like he was being "taken over" (a worry of his and so would likely make him refuse), but that it was a prudent things that is normal for "people of our age".
     
  6. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,507
    south-east London
    Welcome to the forums @Ferdreno. I understand what you say. My husband was diagnosed young and neither of us had envisaged dementia entering the picture and impacting our lives quite so early.

    You have been given sound advice about getting POAs and Wills sorted. It was the very first thing we did after diagnosis, then put it aside to live our lives as normally as possible afterwards. I can't tell you how relieved I was, some years further on down the line, that we had got the paperwork sorted from the start - it saved a lot of fretting when the time arrived to use it.

    My only other advice is to do what you can while you can. For us, the point of diagnosis did not change things overnight. My husband, no longer able to hold down a paid job, volunteered in a charity shop, took part in fundraising and community schemes, continued to play bowls for a while, met up with friends and socialised. We went on holidays, enjoyed daytrips and joined new groups which understood dementia, which would later become an invaluable support source to both of us.

    Life definitely changed and I had to adapt and become more open-minded as each change came along. It wasn't easy at times - but there was lots of love and laughter along the way too.

    The support, information and guidance I received through Dementia Talking Point was fantastic. I don't think I could have coped without it. I am sure you will find it just as invaluable now that you have found us :)
     
  7. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    18
    Talking point is helping me knowing I can come on here and know I'm not alone and am surrounded by people going through similar experiences. It is a tough journey with many lows and few highs but you have come to the right place. Take care of you too.
     
  8. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    I was 56 when my husband was diagnosed 5 years ago (he was 57) but he had stopped working 7 years before that - it just took ages to recognise that the cause of his difficulties was early onset Alzheimers. It was very clear by the time of his diagnosis and almost immediately he needed 24/7 support. With luck you have got your diagnosis earlier. As others have said - I find TP a great source of advice and support especially when times are tough.

    Like 'canary' said - get your Lasting Powers of Attorney and your wills in place as soon as possible and find out about local support in your area (via this website or via your GP). There will probably be a charity that has been contracted to provide some one-to-one support locally. Not always Alz Soc - (it's not in our case)- though it may be. If you are eligible talk to Social Services (at least ring them and they will tell you if you are eligible).

    Make sure you get some 'me' time too, as soon as possible, by sharing his care with friends, family and/or paid carers if necessary/possible. If he can still be left alone get out and do something just for you. This was one of the hardest things for me - asking for (even demanding!) help - but I would not have survived without it.
     

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