Anyone in their 30's dealing with a parent who has been diagnosed AD?

Discussion in 'Younger people with dementia and their carers' started by cgf, Sep 29, 2007.

  1. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    I was 31 when my mum started MI dementia. My son was 6. It was hard. Though time i learned to try and have a normal life when i was away from it ( but that wasn't a lot of times) My son was 20 when his Dad got it as well. He finds it hard to see him now. There is so much needs to be done for this now. My husband has deteriorated rapidly whist my mum was 13years with it.Both different mum taking strokes and my husband taking seizures. Its a cruel illness not just for the sufferer but the family suffer as well.
     
  2. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    You're so right Chip and boy have you been through more than most.

    I wish I had something more to offer than a {{HUG}}} and silent support.
     
  3. Dgirl

    Dgirl Registered User

    Sep 6, 2007
    16
    Dublin, Ireland
    Thanks KateP. Dad managed to get her to take it one time. However it worsened her confusion and we noticed she wasn't walking properly. The side effects were worse than the problem it was supposed to help. So, back to the drawing board....
     
  4. Quack

    Quack Registered User

    Mar 25, 2008
    17
    Yorkshire
    Silver linings

    Dear All

    Just read though all the posts and those of us under 40 have all had a lot of growing up to do courtesy of this dreadful disease, that's not to say it's any easier for older carers.

    Our friends still have active parents enjoying retirement or working, babysitting etc and we are caring, cleaning two households or choosing care homes. And we still need a hug from our mum or dad occasionally or a bit of parental advice.

    My mum has AD and although she's 73, I still feel cheated. But I keep myself going by thinking I am much closer to my Dad now as I have been in much closer contact and I'm the one he's talks to most, in many ways he's my best friend. I'm also much closer to my brother and his family as we've had to work together to care for mum and dad.

    Dad's just been ill and had a spell in hospital and consequently the time has come for mum to go into a nursing home, not our preferred choice but beggers can't be choosers. What really brought it home though was M&Ds golden wedding at the weekend and seeing just how much mum has shrunk over the past year or so, looking as an outsider you could just see a little old lady.

    But Dad enjoyed the day, silently I think he's relieved that his responsibilities as day to day carer are over, he can now see mum on his terms.

    Sorry to rant on, but for all the younger carers out there, my sister in law said to me "what would mum want you to do in these circumstances" and in my heart I know she would not want me to sacrifice my happiness for her care. So get the balance right folks and use TP for the support.
    JB
     
  5. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    To Kate P

    Kate,
    I feel for you when you say how hard it is to recognise your Mum anymore because of the violence and anger in her. Just wanted to post to offer you a grain of hope. Dad although not specifically diagnosed with frontal lobe dementia has been diagnosed as having a lot of fronto temporal damage and for some years he too was very voilent and angry all of the time (and the rest of the time he was apathetic). It wasn't so hard for me to deal with as your Mum is for you as I was used to Dad having one hell of a temper even before he got this disease so I could still recognise the old Dad despite it all.
    These days though he's changed again, and most of the time he is not really with us, but the rest of the time he gives us big smiles and laughs like Santa (doesn't look anything like him, but he does the Ho Ho Hos)..and frankly as a result the whole family is coping so much better.
    So anyways I just wanted to offer you some empathy cos I know how stressful and depressing it is to have this wild person that you have to care for, but often are hurt by. And I just hope for your sake, you get the opportunity to see your Mum settle down again and become more like her old self.
    For us, Dad is actually very unlike the Dad we used to know now, as he never ever laughed this much in all the years I was growing up. It is delightful though, that he can be happy now, despite how ruined his body and mind is.
    Best of luck to you and your family.
     
  6. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Thank you so much for that Nat. It's always good to have a grain of hope that things may get better.

    Sometimes it's like walking in a dark tunnel with no light at all so these grains of hope help enormously - I'd love to see a calmer mum if only for herself - I can't imagine how awful it is for her to be so unhappy and angry all of the time - not to mention poor dad who gets the brunt of it all.
     
  7. salacious

    salacious Registered User

    May 25, 2008
    62
    west midlands
    im 22

    hello, i just read your message, and id like to say that my mother has the later stages of alzheimers disease, she is 44. she doesnt know who i am when i go to see her, sometimes i dont even want to visit because i remember what it was like when my grandfather had it (he was 56 when he died) all the things that have happened makes me wonder whether it is better to know what is going to come along or not. the one thing that keeps me going through all this is to remind myself that she is in there someone, the real mom, the one who would have gladly slapped me across the face if she knew how upset i get (she was quite a spunky woman! haha)anyway, youre not alone, i think it obvious that everyone on here is not alone. mnay thanks for reading this message :)
     
  8. welshchick1968

    welshchick1968 Registered User

    Dec 29, 2009
    24
    Swansea
    I am 41 and my sister is 27. Mum was diagnosed 2 yrs ago with AD and has rapidly declined, especially in the last 6 months or so. My sister and I have different ways in dealing with mum's problems.

    I am a qualified nurse, single and independant, whilst my sister is a housewife and mother of 3 small, gorgeous daughters. My sister was always so close to mum, whilst I was always more of a daddy's girl, but since mum has been ill, that has changed and her way of dealing with it is to try and avoid doing anything with mum if she can. Conversely, I am now a lot more closer to mum than I have ever been.

    My mum, though, to all intents and purposes, has gone. She doesn't even smell like her anymore. But, every now and again, when she holds me in a hug I can close my eyes and I am a child again and she is still my mum.

    Part of my sister's problem is I don't think she knows how to communicate with her. It is almost like talking to a child - patience at the repetition and trying to figure out what random thought she is trying to express.

    I don't think you are ever ready to lose your mother, and no matter what age you are, when you are with your parents you can still be a child, rather than the adult with responsibilities. The problem with AD, is that it causes a reversal of role - you become the parent and your parent becomes the child, both physically and mentally.
     
  9. mip-mop

    mip-mop Registered User

    Jan 8, 2010
    34
    lincs
    only just 40!

    Hi. I have only just joined the forum, mainly becuse of this section.My mum who is now 61 was diagnosed with Alzheimers 2 years ago after a long and agonising wait. We as a family had noticed things were not right at the age of 54, but i think things were on the move before then. Little things that i noticed were hard to explain to my dad, who really didn't think there was a problem, as living with mum all the time it's wasn't so noticeable.
    I have found it very difficult watching someone i love and who was a very intelligent woman slowy vanish. I have at times not visited because the previous visit was so upsetting. This then makes me feel so guilty as i should be there for mum and dad. It's just so flipping hard to watch her spend over an hour going from the back door to the front door trying to get out, with such a look of helplessness on her face. I understand fully how you feel and how hard it is when you have a family of your own to keep going aswell.
     
  10. Winnie Kjaer

    Winnie Kjaer Account Closed

    Aug 14, 2009
    2,011
    Devon
    I can relate to this thread even though I am twice your age plus, but I have a son who is 41 and he could be writing this thread. He has seen his dad for now 6 1/2 years gradually deteriorate. He is always there to support ME when we have an
    emergency, i.e. stroke, TIA or bad weather like now, but as for supporting his dad he finds that really hard. He only visits very rarely (supposed to be due to work) but I know he finds it extremely difficult and boring I think to sit next to his dad who either sleeps or cannot communicate so that he understands, because he is not spending enough time to learn his dads signals. The fact that my husband is in heaven when our son and granddaughter is here has little impact on the situation, he simply cannot cope. When he is here he will read a paper, go to sleep or similar, just to avoid having to make conversation with his dad. He sounds an awful son, but he is a hardworking, sensitive and lovely son who just finds it so difficult to cope with the situation. He was exactly the same when we lost his brother and to this day after 15 years still cannot visit the grave. My friends say to me it is time he grew up,I make excuses for him but how can you make someone cope?
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,352
    Kent
    I don`t think your friends have the right to say that Winnie. He probably hurts too much to see his father as he is, but at least he is there for you.
    I`m so sorry to read of the tragedy you suffered in losing a child. To me, that`s the worst that can happen to anyone.
    Love xx
     
  12. Winnie Kjaer

    Winnie Kjaer Account Closed

    Aug 14, 2009
    2,011
    Devon
    Thank you Sylvia believe you me it is.
     
  13. rummer

    rummer Registered User

    Jan 7, 2010
    11
    Somerset
    31

    and my mum is 60, my Aunty who is in a secure unit with AD was diagnosed at 53
     
  14. mip-mop

    mip-mop Registered User

    Jan 8, 2010
    34
    lincs
    Hi Win. It was so nice to read your message and have the parent point of view. I am constantly asking dad if he minds if i don't go round, it's not because i don't care, but because i find it so hard. He is so determined to care for mum at home, but he is losing himself aswell. Mum is in the later stages at only 61. She hasn,t spoken for 8 months now, is incontinent, and has no idea who i or my dad are anymore. Dad has to lock the doors all day as she wanders off constantly. This is not healthy for dad i know, but no matter how hard i try i can't begin to think how i can tell him he needs more help. He is so focused on mum that he sometimes won't even let me help. I go as often as i can to feed her at lunch time so he can eat his dinner hot, but i can tell he really wants to be doing it himself, as he fusses the whole time. We have had some rows, and i have kept away mostly because i can't stand to see the dad i knew slowly starting to vanish aswell.
     
  15. Trying my best

    Trying my best Registered User

    Dec 9, 2008
    237
    Yorkshire
    I'm 39 and my mum is 68. She's in the later stages and it's been heartbreaking to see her get to this stage. I really don't know which has been the hardest phase for her. She has suffered in so many ways over the past few years... with worry, confusion, restlessness, getting lost, malnutrition, embarassment, loss of identity, guilt (for 'being a burden'), anxiety, depression, anger, aggression, isolation, incontinence, loss of communication, loss of mobility, and overwhelming fear.

    Having with a parent with dementia when you are in your 30s is probably no more painful than if it happens when you are older, but it comes as a bigger shock, I think, and it probably does have a bigger impact on your own life. Our peers are all busy bringing up their families, pursuing their careers/businesses and enjoying their lives, blissfully unaware of how much we are strugging just to cope with day-to-day issues as carers. It can make you feel very isolated, but it's important not to let yourself get bitter about it.
     
  16. weeze

    weeze Registered User

    Oct 4, 2006
    121
    nottingham
    My mum was diagnosed when she was 64 and I was 23. I am an only child and was brought up by my mum alone. I now have three children and it was around the time my mum was diagnosed that I found out I was pregnant with my first child. I feel sad for my children that they will now never experience the wonderful and funny woman she once was. Sadly as her Alzheimer's developed she could sometimes be quite mean to the children.
    Being so young when mum was diagnosed often made me feel angry in the early days. I envied my friends for having younger parents with no sign of the disease and was scared my mum would be gone before I hit 30.
    I turned 30 in November and despite it being a tough year mum is still here. She moved to a care home in July and has settled well.
    Even after seven years of living through this disease it still messes with your emotions and fills me with questions as to what will happen next.
    You just have to learn to take it a day at a time and know that somehow you will cope with whatever this horrid disease throws at you.

    Louise
     
  17. melly

    melly Registered User

    Mar 1, 2008
    19
    Just like us

    Hi there

    I just thought I would let you know that I can completely relate to how you are feeling and speaking with everyone here is such a great support as you stop feeling so alone.

    My mum is now 57, having been diagnosed with Alzheimer's for 5 years. I am now 25 and my sister is 34 and even 5 years on, missing mum doesn't get any easier. BUT, I can say that over time (and trust me, it did take a lot of time) I learnt to love the mum we have now and realised that I just need to make the most of all the time we have left.

    It was so difficult having to reverse roles with mum but now I just want to do all I can to take care of her and make her happy. I feel blessed that I have had the opportunity to tell her how I feel and continue to do so all the time. I give her lots of cuddles and always say how much she means to me...even though she can't really respond, I know she understands.

    It is very normal to feel angry for a while and I even went through a phase of avoiding spending time with mum as it was too hard - but then it hit me that I never wanted regrets. It took time but I wanted to change my thought process and all I can say is that it made the world of difference. I really hope this will help you a little bit - Melissa x
     

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