A group for the children - we all need support

Discussion in 'Younger people with dementia and their carers' started by alicemutch, Feb 13, 2019.

  1. alicemutch

    alicemutch New member

    Nov 2, 2018

    This is my first post on here, so please excuse if I babble on.

    I've been in contact with Talking Point and Alzheimer's Society for a few months now looking to create a support system/ group for children (anyone under the age on 30) who's parents have been diagnosed with Alzheimer's. After going through it alone, it's a lonely process and i wasn't really aware of Talking Point until a few months ago, so I'm sure there's a lot of other children that are unaware.

    My dad was diagnosed with Alzheimer's almost 5 years ago just before my 18th birthday, it sucks, we all know that. I want to make sure nobody feels alone when going through the process and gets the supports from people in similar situations, but also, I want to make sure everyone gets a clear understand of the disease, (not just from using Google).

    I've got a lot of idea's on how I want to help people when their struggling, but i want to know how many people are interested in this? If you are, or know someone, who's parent have been diagnosed and think there needs to be something in place then please let me know.
    Or if you just want a chat about how much it just sucks then I'm more than happy to talk to you.

    Thank you,

    Best wishes,
  2. AliceA

    AliceA Registered User

    May 27, 2016
    Dear Alice, I think you have a great idea here and I wish you well. I am sure you will attract young people. It is a different area than mine with a husband, the issues are similar but not the same. AliceA
  3. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    Hi Alice,

    Thanks for starting this discussion. We've been in touch about this and I'm happy to explore how Talking Point can help. I'll send you a private message to follow up. :)

  4. SHR

    SHR New member

    Feb 12, 2019

    My mum was diagnosed a year ago with early onset Alzheimer's, at 54. I'm 28 myself and still live at home with her, one of two of her twin daughters, and help look after her, along with my stepdad. I would definitely be interested in this thread, however it takes shape, just to ask questions or hear similar stories; just some kind of reassurance. I find it difficult to talk to other people about it because I'll get the same responses, things I would probably say myself if the roles were reversed. But people telling me I shouldn't feel guilt or worry on my mother's behalf for how strangers may react to her who don't know she has something. It'll just be nice to speak to people who know what it's like, long story long haha. Thank you in advance for your endeavour!
  5. WA123

    WA123 Registered User

    Jan 20, 2018
    Hi @alicemutch. I have PMd you about this.
  6. Meg18

    Meg18 Registered User

    Oct 25, 2016
    Hi there,

    I am 23 now, and my mum was diagnosed with young onset Alzheimer's 4 years ago at the age of 56. She had been showing symptoms for years prior to that, probably since I was about 16, but we found it impossible to get her to the doctors and, when we finally did, to get the doctors to take us seriously.

    Best of luck @alicemutch with your ideas about helping people. I think there definitely should be more services for those like us and our parents.

    I definitely share your vision of making sure others don't feel alone. I've started up a blog of my own experiences, so please DM me if you'd like the link! I mainly keep writing because I want to educate others on what it's like, but I'd be really interested to know how it is received by others who are going through a similar situation.
  7. Katie66

    Katie66 New member

    Jun 28, 2018
    Hello, it is so lovely to see this - my sons are nearly sixteen, my husband 75 & we have gone through two hellish years. My own father had AD (early onset - It was a nightmare). Now my husband has what is undoubtedly vascular dementia & we have had no help with a diagnosis. I would love my sons to read your blog. Thank you, Cathy just
  8. Shen Martine

    Shen Martine New member

    Sep 18, 2018
    I would love to be a part of this thread. I have been looking for a group of this sort for support as I am 27 and care for my 53 year old mom who was diagnosed with Frontal Temporal Dementia last year August. It is tough and I hate talking to people who don't really understand (as much as they try). Please do keep in touch.

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