help! young person with Alzheimers

Discussion in 'Younger people with dementia and their carers' started by wimbledon7, Aug 29, 2007.

  1. wimbledon7

    wimbledon7 Registered User

    May 27, 2007
    hi, my wife is only 51 and was diagnosed in February with Alzheimers. However, i'm a bit confused as her memory seems ok but her co-ordination and mobility seems to be shot. She 'shuffles' when she walks and has very low blood pressure. could this be another type of illness? also, hard on my childen , 12 and 14. i hae not told them but they can see she can no longer drive or use the cooker, thanks
  2. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Hello and welcome to TP. I hope you find it a useful place to come I know I do.

    I really can't comment on whether your wife has another illness. All I can say is that with my husband (54) his memory was not main indicator of AD. It was comprehension, spatial awareness and the ability to write.

    The decision to tell the children I think is one of the hardest you have to make. We made a decision to tell ours (9 & 7) shortly after diagnosis and before they returned to school (last summer hols). This was because we wanted them to hear from us in words they could understand. It is amazing what children pick up from conversations you don't think they are listening to. :) We also didn't want them to be scared/worried about the changes they were witnessing in their dad.

    When you do decide to tell them may I suggest that you let their school know as it is possible that they maybe changes in their behavior, concentration etc. In our case the older child needed a lot of re-assurance and love.

    Take care of you and yours.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Welcome to TP, Wimbledon.

    Your wife is so young, I`m so sorry.

    The first things I`d like to ask you is, if she`s on any medication that could be responsible for her difficulties, and have you checked with her doctors whether weakened mobility and co-ordination are symptoms of her condition.

    Young people who develop Alzheimers seem to go down a different route to older ones, but I would always check with doctors, if I had any concerns. That`s what they`re there for.

    I think Jackie has given you some excellent advice regarding telling your children. If they are going to know, it`s far better coming from you, than hearing something in the Playground.

    You have no need to go into graphic details, just tell them their mummy is poorly and that`s why she is having so many difficulties. They are old enough to know about Alzheimers, in my opinion, but the final decision is with you.

    I would strongly reccommend however that you do take jackie`s advice and inform the school.

    Please keep in contact with TP. There is good support here for you, and always someone to offload to.

    Take care xx
  4. wimbledon7

    wimbledon7 Registered User

    May 27, 2007
    hi, thank you all for the advice. i guess i'l have to ask my wife's Doctor as to the spatial awareness thing and is particularly bad late evening and at night. -thanks, kevin
  5. Nell

    Nell Registered User

    Aug 9, 2005
    Although my Mum is elderly (85 next week), her mobility was the first major decline we noticed. She is very shaky on her feet; uses a walking frame in the Home she lives in and needs a wheelchair when taken out of the Home.

    Has your wife always had low blood pressure - or is this a new development?

    I'm wondering what led to the initial diagnosis of Alzheimers for your wife? What symptoms did she have at the time of the diagnosis?

    I think most of us find that long term memory in our loved ones (with an AD diagnosis) is much better for much longer than recent events and short term memory. Does your wife have difficulty recalling things that have only just happened? Does she ask the same questions or tell the same stories or events over and over?

    Altho' dementia manifests itself in many different ways, the above seem to be common for most people.

    I am so sorry you and your wife and children are coping with this devastating disease. It is a tragedy at any age, but doubly so in one so young.
  6. icare2

    icare2 Registered User

    Jun 18, 2006
    #6 icare2, Aug 30, 2007
    Last edited: Aug 30, 2007
    what tests were done

    Hello,can you tell me what tests were done,as I have just found out there is another thyroid illness simlar to dementia..
  7. wimbledon7

    wimbledon7 Registered User

    May 27, 2007
    young person with AD 51 years

    Hi, thanks for all you advice, well appreciated. The tests my wife had were from a Consultant at the Hospital; she had aa year of tests and MRI Scans. She does not seem to have much problem with memory but sometimes repeats herself but certainly lacks co-ordination and has spatial awearness problems. She akso says her legs feel heavy; but she also has many of these problems late at night. thanks
  8. icare2

    icare2 Registered User

    Jun 18, 2006
  9. wimbledon7

    wimbledon7 Registered User

    May 27, 2007
    thanks for that, i'll have a look, k.
  10. stjohn

    stjohn Registered User

    Jul 9, 2007
    Hello there, I too am new to this. My husband has just just been diagnosed with Front temporal lobe dementia after 6 months of tests. He is 58. Was a very intelligent electronics engineer, worked in the Museum but has now retired due to ill health.

    Although our children are grown up, we have grandchildren. I have told them that Grandad is not too well on some days, and they seem to understand and make allowances for him. If anything, he is calmer when with them. We should give our children more credit, so be honest with them but without the detail. They will become your salvation in the future.

    Kind regards

  11. Westie

    Westie Registered User

    I too agree about being honest with your children.

    My husband was diagnosed with Fronto Temporal Dementia a year ago at the age of 51. We have 2 children, then aged 9 and 14. I told them about their Dad's condition without going into too much detail but did make sure they understood that it was something that wouldn't go away or that their Dad would recover from. My younger one didn't ask for any more details. My son (14) was more deeply affected. After the initial upset and anger from him, he was very withdrawn for a while but very slowly asked me for more details. I have been totally honest about anything he has asked and he always asks about any reviews or appointments we have. He knows exactly what medication his Dad takes and what it is for and he is now a HUGE support for me. He did see a counsellor twice but didn't need/want any further help.

    My daughter recently said she knew that Dad was really clever but couldn't help her with homework as "his brain wouldn't let him get the answers out". My son has been amazed and humbled somewhat by the number of former work colleagues who have been in touch to ask after Peter and say how much he is missed. He commented that his Dad is still providing financially for us as if he hadn't worked so hard and successfully earlier, we wouldn't be able to receive his permanent health insurance payments now.

    Wise words from children so young, and I can't tell you how proud I am of the way they have handled the past year.

    Your children will amaze you with their coping abilities and, as stjohn has said, they are your future and salvation.

    Keep in touch and I'm sure you will find TP a real help.
  12. wimbledon7

    wimbledon7 Registered User

    May 27, 2007
    hi, yes, thank you. It really is amazing how children react and come to some kind of acceptance after a while....wish I could too!
  13. DianeG

    DianeG Registered User

    Oct 12, 2007
    I am new to this forum but just wanted to day that my mum (aged 55) was diagnosed earlier this year - following 4 years of decline and 2 years of tests and shows the same problems. my mum can barely manage stairs now and her visual spatial challenges make day to day life for her very difficult.

    I think the hardest bit (in my limited experience to date) is the not knowing what is wrong with them. Now I know what is wrong with my mum I ams lowly but surely finding it easier to cope with her. It would be wonderful if we could can and sell patience and understanding eh!

    Regular checks/assessments with my mum's CPN and social work team ensure we know if she is any worse or, we hope, improving in any aspect of her day to day life.

    I can't believe that this is happening to my beautiful and loving mum and I am sure you all feel the same about your relatives. I am just relieved to have found a forum wth such friendly people that I can have a safe rant if needs be and you won't think I am completely nuts.

    Look forward to keeping in touch with you all.

    Diane x
  14. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Diane,

    Welcome to TP. Your mum is very young to have Alzheimer's, and somehow it always seems particularly cruel for a younger person.

    Not easy for the rest of us, either!:eek:

    Feel free to rant as much as you like, we won't think you're nuts (or no more than the rest of us!)

    If you've any questions, there's usually someone who's had a similar experience, or just join in any of the threads on any forum, you'll be made welcome.

  15. wimbledon7

    wimbledon7 Registered User

    May 27, 2007
    yes, it is cruel on the young and old alike. my wife is only 52! not sure what i can do but pray to any God that is willing to listen!
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi wimbledon7
    yes it always seemed particularly cruel to me that so many younger people have dementia, many more than is generally recognised.

    However, you are quite correct, it is cruel on people at any age.

    This came home to me a couple of years after my Jan was in her care home. she was 62 at the time but I had been caring for her at home then for 10 years.

    To reach the care home I was driving 100 miles every day to visit her at that time, something I wanted and was able to do.

    In the same home, a lady in her 80s from the local area came in on respite, and was visited daily by her husband, who was also of that age and not in good health.

    When the time came for her to move to a care home, the nearest one that could take her was a good 40 miles away. At that distance, the husband, who was no longer able to drive, had no chance of being able to make daily visits.

    They were devoted to each other and their pain must have been intense.

    I realised then that the 'perk' of being younger - perhaps the only one - is that many younger spouses at least can determine through will just when they can visit, not through ability.

    In most cases that is, of course. It also happens that spouses of younger people with dementia are also unable physically to travel long distances.

    Yes, it is hell for all, I guess.
  17. DianeG

    DianeG Registered User

    Oct 12, 2007

    Many thanks for the welcome. I hope I can also help other people via this site by sharing our family experiences.

    Diane :)

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