1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

I'm in my 20's and my mum has dementia

Discussion in 'Younger people with dementia and their carers' started by Lyla_W, Mar 12, 2015.

  1. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    127
    My son and daughter both live in London. Both in their 20s. Their dad has Alzheimer's. It takes them 12 hours to get to us so visits are infrequent, but I feel so well supported by them mentally as we are often in touch vis email, Skype and what's app! Even though they are very busy with their lives and professions. They would probably like to meet up with you too.
     
  2. Beaky144

    Beaky144 Registered User

    Nov 3, 2014
    22
    Hi Lyla

    I am in my early 30's and have been caring for my mum who is now 65 who has FTD. She now lives in a care home and dealing with the loss and grief is incredibly difficult. I was her sole carer and I know my brother (who lives away) struggled with feeling like he didn't do enough to help. The truth is when you are the sole carer you want to do everything you can for your loved one and I know that your dad wouldn't want you to feel any guilt. Your mum is lucky to have your dad to help her.

    It's very hard for people to understand dementia if they have no experience of it and even more so with the conditions that affect younger people. There are lots of books out there that offer some help as well as forums like this one.

    Miss Merlot I live in London and would be interested in coming along to your "support group" if possible?

    Hang in there Lyla. This is horrible but you have to carry on for yourself and your family xx
     
  3. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    3,262
    All are welcome! :D

    I'll PM those of you who expressed an interest.
     
  4. Ktynan

    Ktynan Registered User

    May 22, 2014
    20
    Hello all,

    I'm also in my 20s and my mum in her early 60s has dementia. I am currently based in London and would love to meet up with others who are younger carers?

    Thanks


    Sent from my iPhone using Talking Point
     
  5. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    3,262
    Lyla - you really seem to have struck a chord here!

    Our little group of wine-drinking, young(ish), London carers is now up from two people to six on the back of it!

    Looking forward to the next time! :D

    As ever, everyone is welcome!
     
  6. CHEZA27

    CHEZA27 Registered User

    Jan 8, 2015
    29
    Hello
    I have a mum who is in her early 60's and i was 28 when mum was diagnosed with dementia. Its hard going huni, my dad is ill as well he has heart disease and has spent a lot of time in hospital so I don't have him to care for my mum. I felt exactly the same as you, everyone around me was a lot older and they were there for me but i felt so alone. I don't know whether you cope with it better when your older but its a big thing for someone under 30 to take on and cope with.

    I've had to learn all the legal stuff, ive become my mums atternory, had to get all the benefits in place (which is hard work and you have to keep pushing) and do all the communicating with the health professionals etc....Its really hard going huni and its taken over my life. Tbh I would go to the end of the earth for my mum and do everything i could to make sure she was safe and looked after. You do get through each day, and everyday there is something new you have to deal with or accept, its definitely true when they say that dementia takes that person you love.

    The advice i can give you is to cherish every moment wih your mum, speak about special memories, music etcc... and always smile when your with her because trust me that's what will stick with her.

    Hope reading this helps you, these blogs/forums have been my lifesavers.

    take care
    Cheryl x

     
  7. KatrineWightman

    KatrineWightman Registered User

    Apr 5, 2015
    9
    Hi Lyla.

    I've posted a similar thread to this one last night.

    I honestly feel so alone..
    Would you mind if I messaged you?
    I have a few questions I would like to ask :)
     
  8. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    55

    Hi Katrine, I know that Lyla would not mind in the slightest if you messaged her, I have met her and she is absolutely completely lovely!

    Myself and Miss Merlot set up the aforementioned informal meetup since we are both in our 30s and caring for our MILs. Since then we have had quite a lot of interest from people looking after a parent. You are more than welcome to come along if you fancy it and can make it to Holborn.

    I just texted Lyla in fact and she said sorry she can't get on the forum right now as her laptop is broken, but she will be sure to get in touch with you asap.

    Caring can be very isolating, so it is helpful to come to TP and know you are not alone. XXXX
     
  9. ojgiles

    ojgiles Registered User

    Apr 10, 2015
    1
    Hi Lyla

    It sounds like I am in a very similar situation as you.

    I'm 23, my mum was diagnosed with early onset 4 years ago while I was at University. I have since graduated and moved to London, whereas my parents are at least 2 hours away at home.

    It is so difficult dealing with the guilt of not going home all the time. To be brutally honest in my case, my mum has reached a point where my visits don't make too much difference any more but I find it extremely hard seeing how hard this is for my dad.

    He retired early with hopes of travelling the world with my mum, but has seen his dreams he worked so hard for shatter. He is struggling to cope, but doing everything he can but I can see that sometime soon it is likely he will break.

    I am contemplating moving home to help take care of mum and feel really selfish that the idea of putting my career/friends/relationship on hold indefinitely seems like this evil disease is ruining my life along with that of my parents.

    Not too sure where I'm going with this (I'm finding the rant quite therapeutic) but basically, you're not alone at all - always here to chat things over if you need anything.

    Liv x
     
  10. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    #30 Pickles53, Apr 11, 2015
    Last edited: Apr 11, 2015
    Not wanting to butt in, but just to say that as a parent nothing would distress me more than to have my daughter give up on her own dreams and compromise her own future at such a young age. Your feelings do you great credit, but the best gift you can give your parents is to live your own life well.

    Help your dad organise some support for him and your mum, visit when you can, but it is not selfish to continue with your own plans too.
     
  11. EmmaThrace

    EmmaThrace Account Closed

    Apr 17, 2013
    10
    London
    Hi All,

    I haven't logged on in a while and was reading through all the comments.
    It just breaks my heart to know others go through a similar thing like I did.
    I'm 23 now and my Father passed away in the December of 2013 of frontal lobe dementia at the age of 49.
    My heart goes out to all of you and I am here to talk to if anyone should want to.
    But in response to ojgiles' post...I hope you don't mind me saying that I also agree with other comments in that life is for living. And having even lost someone, I know that my father wouldn't have wanted me to stop pursuing my life and dreams.
     
  12. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    3,262
    Just wanted to add in here that there are a lot more than our original two or three girls now down for joining our next meet up of ladies in their twenties and thirties dealing with dementia - we have a date in the diary set for our next London-based meet-up already!

    If anyone would like to join our unofficial, wine and chit chat based "support group", please just PM.

    All are welcome, and all will be among friends...
     
  13. em_goldy

    em_goldy Registered User

    Apr 17, 2015
    2
    Sydney, Australia
    I am so glad I stumbled upon this website. I am 27 and my mother has vascular dementia. She moved in to a nursing home last year and no longer knows who I am. This has been the toughest year of my life but knowing I am not alone has lifted a weight off my shoulders x
     
  14. magicpink

    magicpink Registered User

    Apr 28, 2015
    2
    Bedfordshire
    my dad

    Hi Lyla,

    I am in exactly the same situation as you with my dad, he is only 64 (myself 34) and is now in an assessment centre and will never come home again. I still live at home so mum mum has my support but it is so hard. He was diagnose two weeks after she retired. I am trekking the grand canyon in march to raise money because it is all I feel I can do. I don't think my friends have any idea how serious and hard the situation is.

    Rosie
     
  15. Kimberlumps

    Kimberlumps Registered User

    Aug 30, 2014
    4
    Epsom
    Does anyone fancy signing up to do the 2015 marathon en mass as young carers with Young alzheimers parents? I'd love something to work towards!!
     
  16. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
  17. MLM

    MLM Registered User

    Jun 17, 2014
    130
    Manchester
    I wish I had seen the marathon suggestion sooner, I would've loved to have done this :)


    Sent from my iPhone using Talking Point
     
  18. Johnny5

    Johnny5 Registered User

    May 3, 2015
    8
    Just wanted to raise my hand and be counted as a younger adult carer, I am interested in knowing more about the informal meet up group that was mentioned by Miss Merlot. Please feel free to PM me.

    Thank you and best wishes to you all,
    Johnny5
     
  19. Breanna

    Breanna Registered User

    Aug 27, 2015
    1
    Similar Situation

    I can relate. I'm 28 and my mom is 55. She was diagnosed a few years ago. My husband, toddler daughter, and I were living 4 hours away when she was diagnosed. I tried just traveling to see her once a month, but it wasn't enough. After a lot of thought and prayer, we moved our family down to be with them. But I also needed to be there since my parents own their own business and my mom wasn't able to work in the office as much. Over the past couple of years, I have completely taken over the office and I'm partly my moms caregiver as well. It's so hard because early-onset is so different than regular Alzheimer's and people don't really understand. They just think she's in her 50s- it's can't be that bad. But when I see my mom regressing and my daughter progressing, it's extremely difficult. My daughter is now smarter than my mom in many areas and this frustrates my mom. They get in fights like two 5 year-olds would. But to only be in my 20s and have to see my mom suffer and slowly deteriorate is so sad. And you're right that there's a lot of support around, but they still can't fully understand. Why do we have to lose our moms at such a young age? I'm pregnant with another daughter who is due in December and I know she won't know my mom, her MeeMee. It's just so depressing.


     
  20. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Justvto say hello to all the young carers. Im well past it now at 49 but i was a carer at 28 less than a year after i got married. My dad had cancer and died a year later. I know this is nothing like caring for someone with dementia as i am 5 years pkus down that road with my mother now. What i wanted to tell you was what my dad told me before he died. He said " you dont look back at your life and wish you had spent more time at work. Get out there and enjoy every minute if your life. Fillow your dreams".
    As a parent myself i now only want the best for my kids. I want them to follow their dreams.
    Your parents will be happy to see you living the life you want. Be there for them but keep going. Love quilty
     

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