21 years old, Mother diagnosed with early onset Alzhiemers.

Discussion in 'Younger people with dementia and their carers' started by emags, Mar 13, 2018.

  1. emags

    emags New member

    Mar 13, 2018
    I first noticed mom was having trouble about 5 years ago, and I wish we had done something then. She was diagnosed officially about a year ago, and she's got so much worse. She is progressing so fast. And I am just so sad, and so angry with everything, with the situation. I'm at university and I hate being away from her. I just want to wake up and for this to all be a dream. I've buried my head in the sand for so long about it, and now it's finally hitting me how sick she is. I've not felt heartbreak like this before, I didn't know it was possible to miss someone who is still in the room with you.
  2. carolynp

    carolynp Registered User

    Mar 4, 2018
    Western Australia
    Dear emags my thoughts are with you. I can't believe you are faced with this situation so young. I find things hard enough with my husband with dementia - but to have it happen to your mother, when you are still at an age to want and need mothering yourself - it is unbelievable. I know that feeling of them being "there - yet not there." With my husband, he's still himself - but not completely himself. He's diminished. And you have been watching this for over five years! My heart goes out to you.

    It is perfectly understandable that, being away at university, you feel torn and wish you were at home. But no mother in the world would want that. We would all insist on your staying at college, living your own life - and thinking of us from time to time, but always in a way that puts yourself and your own needs, your own life, first. You must do this for your mother's sake as well as your own. I believe that, as your Mom it is what she would most want, if she were still as she was, even though, sadly, she isn't now.

    The feeling of being torn will be with you always, on and off, in lots of ways. When my children were young, and I was at work, I longed to be with them. When I was home, I worried about not being at work. It is a sort of ambivalence and it comes form leading a rich, fulfilling life, in which there will always be competing needs. Right now, your paramount goal, despite this ghastly situation, is to get on with your studies. Thinking of you. Carolyn.
  3. emags

    emags New member

    Mar 13, 2018
    #3 emags, Mar 13, 2018
    Last edited: Mar 13, 2018
    Dear Carolyn,
    Thankyou for replying to my message and thankyou for your kind words.
    I'm really sorry to hear about your husband, it really is a horrible disease.

    Yeah, you have got it dead on there with the whole them being "there- yet not there". I wish I had videos of what she used to be like- witty, funny, and kind. I'm almost forgetting what she used to be like, it's like the disease is leaching into my memories of her aswell.
    I miss my mom, desperately. Its a physical pain in my chest, any time I think of her. I feel so guilty being at uni, because I know every day she gets worse, and I should be spending her best days with her, instead of here.
    I know I should finish my degree, and do my best, for her. But it's so hard to focus, when i'm just so heartbroken. I find myself getting frustrated at my friends who take their parents from granted, they don't realise how lucky they are.

    But thankyou for your reply, tonight has been especially hard. Thankyou for making me feel a little less lonely in this.
  4. carolynp

    carolynp Registered User

    Mar 4, 2018
    Western Australia
    Dear emags,

    Thanks for replying. I am so, so sorry. Missing your Mom so desperately. Of course you do. It is unbearable. Yet you will bear it, I know. And you have found your way to the right place here on this site, trust me. Mothers and grandmothers in their thousands will be reading your posts and, even if not replying out loud, they will be holding you in their thoughts and in their hearts. And lots of bonus fathers, grandfathers, sisters and brothers too, all here on Talking Point.

    There is a 17 y.o. posting here who is doing her A levels. She also gets very upset with her friends who don't understand. I believe that you will find, even if it takes time, others who are deeply sympathetic and who have the blessed ability to put themselves in your shoes.

    Try to rest tonight. I hope you sleep ok. May tomorrow be a little easier with perhaps a little less pain. I'm being unrealistic! But it's my hope for you this day. Carolyn.
  5. PJ

    PJ Registered User

    Jan 26, 2017
    Hi Emags, I’m so so sorry to read of the heartache you are going through. Having your mum yet not having the Mum you knew is so hard. My mum has Parkinson’s & has changed so much. I’m 51 & find it unbearable at times but compared to what you’re going through at such a young age I can’t begin to imagine. But please just know, like Carolyn says, as a Mum who I’m sure loves you dearly, you must live your life as best you can knowing it’s what any mother would want for her child.
    Take care & know we are all here whenever you need to talk x
  6. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    I am so sorry you are going through this.

    My husband was diagnosed with early onset dementia in 2012 and I have seen the impact it had on our young adult children from that time and even earlier in their lives.

    Like you, my son was at university at the time of diagnosis and terribly torn between achieving his goals and being here for his dad. As you will realise, the problems caused by dementia would have been present several years prior to actual diagnosis, so both our children encountered these stresses during their teenaged years too

    I can assure you that parents only want what is best for their children, to see them achieve their goals and carve out a path of their own in life. Absolutely no way would my husband have wanted his diagnosis to hold back either of his children in life.

    It wasn't easy for either of them but, six years on, they are wonderful young adults with happy and fulfilled lives - yet have remained supportive of both myself and their dad.

    You do not have to be on hand 24/7 to support a loved one with dementia. My daughter is not a hands on carer but brings joy to her dad with chat and showing him medals from her latest sporting achievements. She also helps support me by picking up things from the shops and running errands. My son is now in full-time work and his dad enjoys hearing of the career path he is now following.

    With help from family, he also attended our son's graduation and celebration dinner - it was a great day which brought him much happiness and pride. Last summer he was present at the celebration of my daughter's 100th marathon, again helped by family to be at the finishing line to congratulate her - and showing great happiness and pride in her.

    My husband doesn't remember their achievements day to day, but each time he 'hears anew' it brings happiness to him, and those are moments son and daughter cherish.

    So I would say to you, don't feel guilty or selfish about pursuing your goals. Make them a tribute to your mother, something to share with her and bring her moments of pleasure - and know that it is what she would have wanted for you :)
  7. cath1124

    cath1124 New member

    Feb 26, 2018
    Hi emags, I completely understand you. I’m 20 and my dad has been diagnosed with early onset dementia and he’s only 58. It’s been such a tough year. At the start I was devastated and just when I felt I was coming to terms with it he began to deteriorate and I felt devistation all over again bu even worse than the first time. It brought tears to my eyes when I read what you said about missing someone who’s in the same room as you. I love my dad so much he is my idol and the best man I’ll ever know and I miss him so much my heartbreaks every time I talk to him. I try and not think about the future and enjoy him now but I can’t help cry about it before I go to sleep every night. I get so angry looking at my friends knowing they’re not going through this and that they could never understand, maybe I’m jealous who knows but I still get upset about it. Although I wish neither of us were in this position I’m happy we’re in similar boats. At least I know there is someone else out there who can understand. Hope all is well with you x
  8. sford91

    sford91 Registered User

    Nov 4, 2015
    Hi Emags

    I know exactly how you feel. I moved away for uni and stayed in city i am in. My mum has frontal lobe dementia and is 58 now and lives in a care home. I go down and visit once every couple of weeks but the guilt i feel is at all times. And the heartbreak you talk about tears me apart. I feel like a part of my body is missing and have constant dull pain in the chest. But when i see my mum all those feelings go away just for a while everything seems okay again.

    If you ever want to talk I'm here :)

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