Any younger people who have relatives with Alzheimer's disease

Discussion in 'Younger people with dementia and their carers' started by leanne, Feb 18, 2005.

  1. leanne

    leanne Registered User

    Feb 18, 2005
    Hi, i am new to this site and have only just registered. I have registered because my mum has early onset Alzheimer's disease as does my auntie. My mum is 49 years old and has been in a nursing home for almost a year now. Me, my sister and my step dad were no longer able to cope. We think that my mum has had Alzheimer's disease for several years and is now inthe late stages. My auntie, 45, has recently been diagnosed with Alzheimer's disease too and my grandma died at the age of 64. Obviously me and my sister are worried that we will inherit the disease.
    I am doing a parachute jump in March to celebrate 25 years of the Alzheimer's society and raise money for it. I plan to raise as much awareness as possible as somany people are unaware of early onset dementia and the difference between this and normal dementia. I would be interested in hearing from anyone who is of a similar age or in a similar position to me.
  2. jackie w

    jackie w Registered User

    Jan 4, 2004
    leanne im sorry to see that your family has been so affected by ad.My mum was diagnosed with ad acouple of years ago but we think she has had it for at least 8 years and is now fairly advanced.I dont post very often, but read the posts every day as i find them a great help.
  3. Rosie

    Rosie Registered User

    Jun 10, 2004
    South East Wales, UK.
    Hello Leanne, Just read your posting, my mum was diagnosed withAD at 60yrs old but the illness had began long before that, as early as 55yrs. We tried to cope at home , but in the end my father had come to the end of his tether + my mum went in to an assesment unit , she has never come home since , that was 6 yrs ago, the illness is very advanced , + she need's care around the clock. I visit + my dad, + younger brother, but my sister + youngest brother has not been to visit for years. I try not to judge them but I could never give up on my mum, I know that it may not be long before the end but I cherish every visit + will continue to visit until the time comes. I feel for you + your family . Look after each other + take care, thinking of you . Rosie x
  4. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    #4 Michelle-A, Feb 19, 2005
    Last edited: Feb 19, 2005
    Hi Leanne,

    Reading your message sounded all too familiar to myself. I was 20 when my mum was diagnosed four years ago, so I know how hard it is being so young and coping with the fact that your mum has dementia.
    Rather than repeat my whole story again, if you read the post "My mum has AD and Parkinson's" you will notice that I am in a very similar situation to you. My mum was diagnosed with AD at about 49, she is now 53, in a care home and in the later stages too. What care home is your mum in? Me and my sister were looking after her but couldn't cope either.
    We are also scared that we are going to get it too!
    I have also been looking into doing a skydive to raise money for AD! whereabouts will you be doing it?
    Kind regards,
  5. Vik

    Vik Registered User

    Jan 29, 2004
    Hi Leanne

    My dad got early onset dementia in his late forties, and was eventually diagnosed when he was 56. He died last year, aged 59. I am now 28 and my sister is 26. Dad had gone into a home 7 weeks before he died. It is very hard indeed, trying to cope with it all, isn't it?

    This discussion forum is really useful, just to read the other postings and chat to people who understand. When my dad first got AD, I felt so alone (except for my sister) as I didn't think anyone would understand. It's not what you expect to have to deal with in your twenties, is it? Well, you are not alone at all. There are actually lots of people in similar situations (unfortunately). So, feel free to ask any of us on here anything, anytime!

    I would be interested to know where you are doing your skydive, as my sister lives in Northamptonshire.

    Take care of yourself and take one day at a time.

    Vik :)
  6. JoJo

    JoJo Registered User

    Sep 25, 2003
    Hi Leanne

    My dad is 61 and has Alz and Picks Disease. Although he has only been diagnosed for 2 years he has been 'odd' for many more years than that and we can probably trace the illness back for 10 years.

    It is a horrible disease when it hits anyone but even worse when it gets someone in their prime. In Shropshire they have great services for early onset sufferers and have just launched an Al's Cafe - a monthly support group meeting for early onset sufferers and their families. We have been along to the two meetings as a family and it is really good to meet people in the same position. Doesn't make the disease any better or easier to cope with but its good to talk to those in the same position.

  7. Kat

    Kat Registered User

    Jan 24, 2005
    The Loss of a mother...

    It's really hard when one of your parents get ad. My mother was diagnosed in 1999. I just came back from University and then we realised that something was wrong. Having said that mum was in her middle stages by the time we realised. You feel bad for not realising sooner but you can't with this disease - everyone forgets!

    My mum moved into a full time care home and it has worked out well. My father and I looked after mum for 4 years and then we couldn't take anymore and I started to worry about my dads health. I too had to deal with this in my twenties and I feel sad now that I have never and will never be able to have that mother & daughter relationship like other girls. It's now that I should be talking to mum about my life, relationship etc... I want her to be here but she's not (not mentally anyway).

    Anyway, before I start to cry I just wanted to agree that this is one of the hardest things I've had to deal with and still dealing with. All the pressure and worry fell onto me and I dealt with it because I wanted to relieve my dad from some of it. I have done everything from finding the home, sorting mum's finances and then having to find out that the house my parents bought will go the the government (well only mums half) - anyway that's another issue.

    I've never posted on this site before but I read your message and wanted to tell you my story and that you are not the only having to deal with this horrible disease. Whatever you do, find someone to talk to, a friend, partner, someone you can cry to. I didn't and dealt with absolutely everything and cried on my own - completely alone and now I am having counseling because it all got too much for me. I'm ok, just need to deal with it and it is hard. So, please communicate with someone, it doesn't make the problem go away but it helps in the long run. You have to learn to accept certain things but also to let go and not hold onto things that are not there anymore. Anyway this email is getting long, better go.
    Good luck, we all have to be brave & strong for dealing with it.

    Good luck...
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Kat

    many thanks for posting your story - a most awful part for the carer is the feeling of being on one's own. I think many of us try to keep things going alone, but there is a right time, and place when speaking to others, learning from others, helps.
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Bruce is right.We tend to deny that there is any thing wrong,we struggle on coping alone,feeling very lost.
    I wish in the early days I had been aware of this site,some one available most of the 24 hours,some one to turn to for support.
    Had I been aware of TP I could have saved myself many hours of worry and anxiety
  10. Kat

    Kat Registered User

    Jan 24, 2005
    Thank you for your reply Bruce & Norman.

    I'm hoping that this will all get better one day! It's funny but I really feel that it has affected my personality and it's horrible knowing that you are not the person you use to be but I want to be that person again. I use to be so happy and bubbly and now I have become this very serious, responsible and stressed person. When something like this happens it does give you a different outlook on life & career. So, I suppose it will change you slightly...

    I hope the counseling works for me - it's early days yet but I think it will.
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Kat

    This has all changed me, my life, my outlook, my personality - my future - massively.

    For me, the change wasn't slight! Hopefully, in a way or two, it will have been for the better.
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hello everyone, this is so sad, so many younger people with dementia. So many very young people having to deal with it all. It's so unfair, I just wanted to say how much I feel for you all, you sound so sincere and caring. This is a dreadful illness and to have to deal with it when you are yourselves so young, you all are just brilliant in your attitude, your parents would be proud of you if they could just understand enough. Please let us know about this parachute jumping, would love to join you but my arthritis would scream for a twelve month! There doesn't really seem much known about the heredity bit as yet, but you could try our fact sheets, go to the TP home page, top left hand corner, info sign. So glad you have all decided to post, if we can get you all together and talking, you will be able to help each other and others to follow. Then TP will have triumphed because this illness can make you feel so alone, now you are among friends. Keep postin' Love She. XX
  13. connie

    connie Registered User

    Mar 7, 2004
    Thankyou all for posting on this thread. My heart goes out to all of you young carers out there.

    My Lionel was diagnosed when he was 60, but like most of you the diagnosis was a long time coming. So I guess he would have been 52/53. but that seems quite old to some of you.

    Thanks for sharing your experiences with us all on TP. Connie
  14. JoC

    JoC Registered User

    Feb 25, 2005
    Hi Leanne,
    My situation has been very similar to yours. My Mum was just 43 when she died from Alzheimer's and there has been a long history of it in the family. So i understand your concerns.
    While my Mum was in care we had blood tests carried out on her to find out if there was a genetic factor involved. Her doctor arranged for it to be sent off for testing - i think it was with one of the Alzheimer's groups, but i will check that for you.
    It was discovered that she had Familial alzheimers, which means myself and my siblings have a 50% chance of having it too. As difficult as it is to know this now, i know that if any of us have it then it will help.
    If you are worried then you should approach your Mums doctor and they may be able to help. I know it's a scary prospect but if there is a genetic factor you will at least know what you are facing.
    This message doesn't sound all that comforting, but i'd like you to know that there are people out there who have been through similar things to you.

    Take Care. JoC
  15. lisaw

    lisaw Registered User

    Nov 22, 2004
    My mum was diagnosed at 51 but the signs were there since she was 44 and I was 14, actually I was 12 when I think of the very early days of her "forgetting". I am 26 in a few months and still trying to figure out how to deal with this. I moved back here from Trinidad 3 years ago when the time came to put mum into a home (we moved out there was I was 8 from England). My dad and I were caring for her.
    I can totally relate to what Kat is saying, the mother/daughter relationship thing, I am getting married next year and pretty much dreading it because she can't come or help me plan it. I am scared to think about having children because I don't know what it is like to have a mother so how can I be one to any children I might have? As for my dad... well he seems to be losing it all the same, slowly killing himself with alcohol because he cannot accept what is happening to my mum, it is all a terrible mess, I just feel so hopeless about the whole situation. My fiance is my rock and shoulder to cry on, he is wonderful. Kat is right, you really do need to have someone to talk to.
    I have decided this weekend that I am going to get a diary for my mum and write to her. Tell her what I am feeling, what I am doing and to tell her how much I miss her. I will write when I am sad, or happy just to tell her about my life because she has missed out so much as well. I will probably bury it with her when she dies, I know she won't be able to read it but it will be with her. The screen is blurry again, oh dear the tears have reappeared.
    Lisa x
  16. joho

    joho Registered User

    Mar 6, 2005
    County Durham
    And Life is suppose to go on

    Hi all, I've just joined talking point. My mum is 60 and was diagnosed with AD in Oct 2001. As many the signs were there but we failed to spot them. In the June my Dad had a mini stroke, which at the time we were led to believe also damaged his short term memory. It's only been since Jan this year that we now know he has Vascular Dementia.

    My mum's condition deteriorated in Nov, she was having spells of anxiousness, frustration, hallucinations, etc, this resulted in her spending 5 weeks in a mental health unit, which was horrendous. Having been in for only 4 days she had a serious fall, black her eyed, cuts and bruises. The incidents continued until we pushed for her to come home. Unfortunately that didn't last for long, but at least she had Xmas at home with the family. In early Jan, my Dad who since the Vas. Dem. progressed turned to Alcohol, he wasn't able to look after mum properly and also failed to see what help she needed.

    The team involved felt it would be best for my mum to go into care. She spent 4 weeks in respite until a suitable home was found by ourselves. This in itself is a horrendous task, I can't believe in this day and age we allow people to live in these situations. We found what we believed to be the best home, but when you actually see things close up, you question whether you have done the right thing. We have our review at the end of this month to decide if this is the right home for her. Let's hope it works out.

    My brother isn't coping with the situation and was adamant his mum was not going into a home, but like everybody else we feel we couldn't do everything for her at home, especially when Dad was causing more problems rather than helping. As it stands life isn't that much easier knowing she has care 24-7 as you wonder if she is really alright, Dad harrasses us 24-7 asking the most trivial questions and is most often than not quite horrible in his attitude. At the end of the day we have to remember its not really him but the Vas Dem.

    I was never aware of how horrible both diseases were and to watch both our parents slowly disappear is hard, I'm so jealous of my friends who have parents who are fit and well. It's even harder when I visit my mum and she puts her hand to my cheek, it just makes me melt inside and I wish I with all my life I could make her better. I don't want her to suffer and end up like the other people in the home where she is.

    We all need to stick together to fight this cruel, cruel disease and ensure that society knows what this life is like. Too often the systems take advantage of us and drive us to despair.

    Sorry for the rambling but as you can tell I have a lot on our chest and have held onto it for so long.
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Lisa, so very sorry my love, to hear about your Mum. I think your book idea is lovely, but I do hope it doesn't upset you too much. I kept a diary which I still can't yet read since losing my Mum. It must be very hard for you, this illness has robbed you of your lovely Mum and all you should have shared with her as you grew up and became the lovely young woman you now are. Your Dad must also be feeling lost and cheated by this dreadful illness, my heart goes out to you both. Your fiance sounds so nice, I wish you both much happiness together. try not worry about all the tomorrows, what will be, will be, as Norman says, day by day. Love and hugs, She. XX
  18. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Joho, how awful for you, it's dreadful enough caring for one with dementia, but with two it's nigh impossible. One of the other moderators, Jude, both her parents have it, they are now a bit older than yours, but I am sure you and she will have much in common and shes bound to post as soon as she see's yours. She is having PC problems at the moment so it may not be straight away though. Try not to beat yourself up because you've had to let your Mum go into a home, you are doing your best in a very difficult situation, that is all anyone can do. Try not to feel guilty because we none of us are superman/woman, we all can only cope with so much. I am so glad you have found us, please post whenever you can. We will always try to support you and you will find many friends here willing to share experiences. With love, She. XX

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