Early onset with a young family : how do you keep it normal for them?

Discussion in 'Younger people with dementia and their carers' started by wheresthepony, Sep 13, 2015.

  1. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Morning DomC
    I think your approach is spot on - there's time enough to look around for information and support
    Right now, what I hope for you, Gill and your family is a wonderful Christmas -a chance to have a lovely festive time together and make heart-warming memories
     
  2. NorthLondon

    NorthLondon Registered User

    Dec 18, 2015
    4
    Similar situation

    Hi there,
    My husband was diagnosed with FTD in September. We have a 6-year-old. I'm new here, in fact it's the first time I reach out to anybody at all. Life is really difficult and just like you I'm feeling swamped. Our daughter is struggling too but since my husband is still physically more or less able to look after himself it's hard to make big changes at home. I'm really concerned about her wellbeing and wonder how I will know at what point the situation at home is no longer acceptable for her to grow up in. I'd love to know how you're finding it with your children.
    (I don't technically qualify for this group since my husband is too old - but since I'm younger and we have a small child it's the one that best describes our situation, I hope you don't mind...)
    xx
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Morning NorthLondon
    I see this is your first post - so welcome to TP - I hope you'll have a good mooch round when you have some time as there's lots of information on here
    I don't myself have a young family but there are members in situations similar to yours so I'm glad you have found us as there's a lot of support and many listening ears here
    Have you had a chat with your GP about how you are feeling (not just about your husband and his situation)? Keep your GP in the loop and don't be afraid of telling them exactly as it is, they will support you.
    Social Services/Adult Care can do a carer's assessment which is aimed at supporting you, so contact them too. To be honest, the sooner you put support in place and make any useful adaptations to your home, the better it will be for you all.
    Have a chat with your local Alzheimer's group, they may well know of others in your area in your situation so you could go along to a café get together and meet them.
    and, of course, do post again :)
     
  4. wheresthepony

    wheresthepony Registered User

    Sep 13, 2015
    11
    Hello north London,
    Sorry to hear you're going through this too. You feel so torn, don't you. Some days my girls cope really well and other days they just behave like normal kids and get angry and frustrated at him. And I often have more sympathy with them and then end up feeling guilty because I'm not being as understanding towards him as perhaps I might if the kids were older and we could live at a pace he could cope better with.
    It's tough and knackering being the bridge between them. Thank God for good friends and admiral nurses, x hope you have a pleasant Christmas. Feel free to pm me if you want a private chat,x
     
  5. NorthLondon

    NorthLondon Registered User

    Dec 18, 2015
    4
    Thank you both, yes I will PM you wheresthepony, and I'll keep reading/posting too!
    Thank you for the info Shedrech, I've just registered with a new GP's surgery so I will be booking an appointment soon. I do need to meet new people... x
     
  6. EleanorRoss

    EleanorRoss Registered User

    Dec 14, 2014
    16
    Hi there,

    My dad was diagnosed four years ago with Alzheimer's when he was 55 years old. I was 16 years old at the time and my twin sisters were 14. In regards to your daughters, my main piece of advice would be to make sure that you look after yourself too as a mother and try not to get too overwhelmed by it all. When my dad started to get gradually worse, it killed me to see my mum upset. That was probably the one of hardest things about it all.

    Accept the fact that your children are going to deal with the whole thing in different ways. One of my sisters never talks about my dad whereas my other sister finds it easier to talk to people about it. There is no 'normal' way to deal with it all. Sometimes we are angry about it, sometimes we cry about it. It is all a part of the grieving process. Four years later and I still don't really know what to think of it all, but I'm coping. It is an awful thing to experience at a young age but I believe that as cliched as it sounds - it has made me a stronger person.

    Please try not to worry to much about their future and focus on how your children are right now. Try to make their lives as normal as possible and don't let the disease take over their lives.
     
  7. Tracyfaria

    Tracyfaria Registered User

    Sep 4, 2014
    6
    Taplow
    #27 Tracyfaria, Dec 24, 2015
    Last edited by a moderator: Dec 24, 2015
    My husband of 64 as early alzhemiers n we have a 21 month

    Hi
    My husband as early alzhemiers n we have a 21 month old daughter
    So can really relate to what ur going through
    Where do you live x
    You just have to build a network of friends n family that are willing to support you
    This will be where you will no the people that really care n be surprises by
    . Me have to go as little one is waking x
     

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