In your 20's? Parent with Early Onset?

Discussion in 'Younger people with dementia and their carers' started by Liz21, Jan 18, 2016.

  1. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26
    Hi all, am new to Talking Point.
    Just wondering if there are many people in their 20's with a parent with Early Onset?

    I have a parent and grandparent both with Alzheimer's and dementia...so it really has been our "world" for many years.

    There appears to be so much less in the media and known about early onset.

    We just make the most of every day
     
  2. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi Liz 21

    My 29 year old daughter is in your position as her Dad/my husband has both Early onset Alzheimers Dementia and Parkinsons Disease. She is going to join Talking Point over the next few days and will respond to you on Talking Point. I think it would be good for her as well to talk about it.
     
  3. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    83
    It seems we're in pretty similar situations.

    My grandmother has Alzheimer's and my dad has Frontotemporal dementia which was diagnosed almost 2 years ago.

    How are things working out for (all of) you?
     
  4. AlexEJ

    AlexEJ Registered User

    Nov 1, 2014
    22
    Hi. I'm 29 and my mum has just gone into a home as she has Alzheimer's as my dad couldn't care for her any longer. Such a cruel disease
    Unfortunately there are so many people in our position but the great thing about TP is that you realise you're not alone.
    Take care x


    Sent from my iPhone using Talking Point
     
  5. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26
    Hi all,

    Yes the great thing that I've just discovered is that Talking Point can bring people together in similar situations.

    2016 has shown its challenges already- Heartbroken as my dad had just been moved into a care home...the same one as his mum... Which is comforting but hard for family members to come to terms with the change and I'm guessing unique for mother and son to both be together again in this situation!

    Although diagnosed for 7 years, with concerns for the last 10, the last few weeks and a move to a care Home have still strangely come as such a shock- even though we have always known from our experience with our grandmother that this would be inevitable!

    I know this is just the next stage on our journey with Alzheimer's...and best of all he's still my Daddy. I guess I just didn't expect this all to happen before I'm 30! My mum is the most amazing person I know, she's been his full time carer throughout.

    How are you all getting on?

    Make the most of every moment.

    Take care x
     
  6. flystand

    flystand Registered User

    Jan 18, 2016
    13
    Mt Pearl,St John's nl
    Hi, im new here, i am 33 years old, and am struggling with my mums diaganosis

    Someone just sent me an email asking me if I knew I carried the same gene? She said that if my mumhas dementia, the middle chil,if female ,carries the same gene and that I will most likely end up with Dementia. is this true? If it is or could be true is there ways to find out? Boy do I ever wish I didn't have some mental health issues myself ,the littlest change,comment ,whatever immediately makes me anxious, panic and worry , would my mum being 60 be considered young to have this terrible disease ? I believe so, I just double check everything. AHHHHHHHHHH, I just was having a look around the forum and seen your concerns , I'm new here and am learning and have been given hope a blessing from god, TP,and all involved I truly believe you saved my life and gave me hope and its so beautiful to see everyone helping each other
     
  7. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    83

    I've been finding things quite hard for the last year especially.

    Although, my dad was diagnosed in mid 2014 he had been having some cognitive issues for a few years before that and first saw the doctor about it in 2011. After my mum passed away last year he's deteriorated pretty quickly and can no longer be left home alone.
    He's been going to a day centre for around six months now, gradually moving up from one day a week to five. That has been a huge help, but it's still very difficult to fit in paid work during this time, and of course, spending all or most of my time away from him doing (paid) work is tiring in itself.

    We (my brothers and I) have just requested a carers' assessment, hopefully we will be able to get some help with some much needed respite care. Unfortunately, with the way things are going, I suspect that my dad will have to go into a care home within the next year or two. It's becoming harder and harder to cope with his needs and as much as it'd be a relief for us, it'd actually mean he's getting the help and support he needs. We have worries re: housing and care costs though we'll just have to find a way somehow.
     
  8. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26

    Sounds like you have been coping amazingly. The reassuring thing is that dad is safe in the care home and is being looked after by people who understand his needs. It's now getting used to how our lives fit around this change. The need for care home happened incredibly quickly as he deteriorated in a matter of weeks - something I had never expected and certainly wasn't expecting to happen.

    The costs and the paperwork are bonkers...such a stress for many people in this situation.

    Keep seeking that support and don't be afraid to offload - it's ok to find it hard! Hope you have got friends and family looking out for you as well. You need to be on top form to do all that you are doing.
     
  9. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26
    It would be good to talk. We have wondered if my dad is showing early signs of Parkinson's too. His dad had it too.

    Hope you're ok - I know how difficult this must be for you all. It does teach you to treasure every moment though! (However challenging done may be!)
     
  10. Ihtl

    Ihtl Registered User

    Jan 19, 2016
    83
    Yes, we know that long term and even in the short term moving into a care home would be best for him. We're just trying to figure out how things will work out as far as housing and finances are concerned. My siblings and I live with my dad but we're all over 18 so we're not sure what will happen with our living situation.
     
  11. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    1,085
    Brazil
    No. Genetics are not so simple. Talk with GP if you want your DNA tested.
     
  12. April06

    April06 Registered User

    Apr 15, 2011
    13
    West Yorkshire
    I'm 25 and my mum has Alzheimer's. She was diagnosed when I was 19 and I cared for her up until a year ago when she moved into a nursing home

    Would be nice to speak to younger people in the same situation
     
  13. AlexEJ

    AlexEJ Registered User

    Nov 1, 2014
    22
    Hi April, I'm 29 and my mum has just gone into a home. She was diagnosed about 6 years ago. Such a terrible disease to live with.how is your mum doing in the home?

    X


    Sent from my iPhone using Talking Point
     
  14. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26

    Sounds like you've had a challenging few years - Ive been so lucky as my mum was the carer for my dad as I wasn't living at home.

    How are you finding things now?
     
  15. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26
    Sounds like we are all in a similar position. My dad was finally diagnosed 7 years ago but my mum first took him to GP 10 years ago.

    did you both find it difficult when they went into a home? I'm finding it a real shock.
     
  16. AlexEJ

    AlexEJ Registered User

    Nov 1, 2014
    22
    Hi Liz,

    Yes my mums diagnosis took some time. I think we were all a little in denial too which didn't help.

    My mums only been in a home a few week and I have really struggled with the change. Although I didn't live with her or my dad, the idea that she'll not live at home again is hard to come to terms with. She has good days and bad days in the home, which is to be expected I guess. My dad visits daily and calls when he is there, so I can speak to her which is nice.
    I don't know about your dad, but my mum has suffered with anxiety and this is well and truly prominent now she's in s home. They had given her a sedative to calm her but she was like a zombie so we've asked them to reduce it, which they did and she seemed better.

    How are you finding things?
    I hope you are finding some solace in TP and that many can empathise with how you're feeling. My friends have been great but, they can't relate to what it's like.
    X




    Sent from my iPhone using Talking Point
     
  17. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland
    Take a deep breath and try to relax. Am much older than you but I ask myself who on earth would send you an email like that? I never heard of such a theory!

    I doubt if there is any research to back up that abstract!!

    Keep posting. We are here for each other.

    Sending you a virtual hug.

    Aisling ( Ireland )
     
  18. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26
    I think you hit the nail on the head...its so hard to deal with unless you're in the situation! my dad knows a lot of people...therefore speaking to other people has been really hard as they've been so upset too! I feel awful as they are stood there, searching for the "right" thing to say, as I sometimes feel there's nothing they can say! It's the right decision for everyone but it's so hard.

    My dad was always an anxious person throughout his whole life, so it's interesting that you say your mum is the same.

    I didn't live with them either...but their house is just full of his possessions. It seemed wrong to use his mug and sit in his chair for the first couple of weeks (that must sound really silly!!!) bizarre to think he won't be back to use them.

    I'm finding this like im grieving for who he was and working out how things are going to work out now.

    Thanks to everyone for their responses. I still feel there is a huge need to spread that Alzheimer's and dementia is not an "old persons disease". Too many adverts on TV at the moment which don't show younger people!!

    X
     
  19. Lash

    Lash Registered User

    Jun 14, 2015
    16
    Hi I'm 29 and my mum (63 in a couple of days) was diagnosed with Alzheimer's in December though symptoms were present for about 2 years, things are progressing quicker than I anticipated and its heart breaking. I no longer feel like a daughter and more someone who nags and tries to help but she doesn't understand why. Lowest point so far was her not knowing and still not realising weeks later that it was my birthday (I'm her youngest of 3). Xx
     
  20. Liz21

    Liz21 Registered User

    Jan 18, 2016
    26
    Welcome to the group - it's great to talk to other people in a similar situation. The three hardest times for me have been Dad's original diagnosis, then him forgetting how to read in public (he used to do this a lot) and then him forgetting my birthday so I really empathise with you.

    It is horrible when you almost become the parent in the relationship. Hope you have family available for support at this tricky time? There are many ups and downs - but this disease does make you appreciate all the small things in life and all the great moments - however frustrated and nagging we all have to be!

    Keep talking to us
    X



    Sent from my iPhone using Talking Point
     

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