how to cope with mum having dementia

Discussion in 'Younger people with dementia and their carers' started by acj2002, Feb 8, 2019.

  1. acj2002

    acj2002 New member

    Feb 8, 2019
    1
    My mum whos 48 has been diagnosed with dementia today after years of memory issue. Im 16 and ive never truly know life with what is known as being a proper mum as my mum has shown the signs of dementia for almost as long as i can remember but the blow has been one of the hardest things ive ever had to deal with in my life yet. Im terrified of what the future holds not only for my mum by myself and my family as at one point my dad will have to give up work to care for my mum when she can no longer do it herself as well the fact that eventually she will forget who i am. I feel like this is an illness people who are adults have to deal with, not something a 16 year old needs to deal with like my issues should be around my education and which boys fancy me not having a mum with dementia. Is there someone out there who can relate to me, just so that i dont feel so alone because i know of no one else my age or close to my age who is dealing with something like this.
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,181
    Male
    Bristol
  3. El31

    El31 Registered User

    May 21, 2018
    35
    I’m so sorry you are going through this, I am 32 and struggling with my mums deteriorating mental health although we haven’t had a diagnosis yet.. at 16 you must be going through a hard time with all of this. Speak to social care and about support groups , your dad also might not have to give up work as carers can come
    In to support her. You can also request a young carers assessment x
     
  4. cath1124

    cath1124 New member

    Feb 26, 2018
    9
    #4 cath1124, Feb 10, 2019
    Last edited by a moderator: Feb 11, 2019
    Hi yes I can completely relate to you. Although my dad was diagnosed at a later age than your mum (58) I was 19 when he was officially diagnosed but similar to you he had shown symptoms for years beforehand. My mum has poor health too and so my dad has always been the sole 'breadwinner' in our family. He works in the restaurant business so as you can imagine as he has progressed it has proved increasingly difficult for him to work. We are getting to the stage now where he will have to give it up as he is just not able. Obviously this is a worrying time for us financially but there is lots of help out there if you look for it and I just want you to know that when the time comes it will be okay. I can understand how angry and afraid you are because I felt/feel like that too often, I can't speak to my friends about it because none of them truly understand. But as time goes on you just learn to cope and appreciate the time you do have with your parent now. Hope you're ok.
     
  5. SHR

    SHR New member

    Tuesday
    1
    Hi there. I'm so sorry this has happened to you so young, to both of you (acj2002). Though I'm very impressed you're here so soon, and that you're seeking out help in those who might understand around you, that's more than I've done up until now. My mother was diagnosed a year ago, when she was 54, and I was 27 so still, not as young as you are. I still live at home though so I still feel as though I am very much living it. I lost a parent too when I was 9, so I can perhaps identify with those feelings as a child, though I've found being older, this time, and so much more aware has been far more difficult. Anyway, like you, for years she had been showing signs and we've all displayed our own ways of denial in what it could have been. It was hard work getting her tested, having to convince her, and the diagnosis was probably her worst nightmare. She lived with the knowledge for a bit, and we would do our best to comfort her and find an optimistic outlook we could which is normal practice I suppose. But then she would start finding letters, looking through mail, and keep reliving receiving the diagnosis for the first time 2, 3, 4 times; as I suppose she would keep forgetting. So now it feels like a secret my family has around her, about her, which feels terrible. I've been told it's nice that she doesn't know what's happening to her, but I struggle to see it that way. It's just turned my stepdad and I into agents of restriction for her, and she doesn't know why. Though she forgets and repeats, her personality also changes. All of her filters have gone, she can be belligerent and she can be snide, and to try and steer her back to amenability sometimes takes more patience than I think I'm capable of. I felt like I was stuck between either for guilty anytime I would take myself away, or I would do the opposite, out of martyrdom. But I've learnt to accept being selfish sometimes and not beat myself up for it. As long as it doesn't cost those I'm in this with notably. I've found with this, though familial sentimentality makes me really uncomfortable for some strange reason, just listening or being empathetic towards my stepdad has been really important. Realising those idyllic hopes for your retirement are over before it's barely begun, I can only imagine how hard that must to adapt to. Sorry, anyway, I think the thought of your parents being in danger is traumatising. And then as the symptoms change or develop, once you've gotten used to managing a symptom, they shift and change, and each time it feels like a new trauma. But I feel like if I'm here, and I know it's not just me, and that I've got back up? In any kind of metaphorical, ephemeral, practical, spiritual way..I'm already in a better place than I was. Hopefully.
     

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