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Thread: Hello

  1. #1
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    Hello

    My husband was diagnosed with Alzheimer's in June at the age of 53. We have two teenagers, 17 and 15 and it has been devastating. I thought having a diagnosis would help us understand and deal with his personality changes, but I'm not sure it has. And why does everyone seem to think that Alzheimer's is only a dodgy memory or deafness! He lost spacial awareness quite early on so I sold his car and he is now pretty much house-bound. We were recently allocated a social worker and she has been brilliant and recognises that he is lonely and isolated, as I am at work and our children are at school, so we are getting regular lunch time attendances from a carer, to make sure he eats, has companionship and gets out for a walk or some exercise. I'm not sure the drugs are doing anything at all. Although we have no prognosis, which I guess is due to his age, my concern is also very much for our children, both of whom sit exams next spring/summer. I want to tell the school, but one of them is quite adamant that the school should not be told. What do you think?

  2. #2
    Volunteer Host Shedrech's Avatar
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    hello Langleys10
    a warm welcome to TP
    I'm glad you have found us, for the support you gain; so sad that you and your family are facing challenging times
    It's good that you have been able to organise some home care that suits your husband - there may also be day care at a centre available, worth asking your SW - and maybe try an account with a taxi firm if you think your husband is able to be out and about by himself, that way he won't have to have cash on him to pay, and he can build up a relationship with the firm
    I appreciate why one of your children may not want the school to be advised; I guess they feel it may become a topic of gossip - I was a teacher and know that any information given to the school is kept in confidence, only those directly involved with your child would be informed eg the form tutor - it's actually helpful as the staff can then just keep an eye out for any concerns and support the student eg give space for homework to be done, be available for a chat; sometimes it actually is a relief to talk to someone outside the family - I'd also say that it's useful for the school to know as if exams are coming up and something happens to upset the student, extenuating circumstances can be passed on to the exam boards - there have been young members here who have found their teachers very supportive - there's also a facebook group for young people living with someone with dementia
    unfortunately, many who have not come across dementia in their lives just don't understand how much it affects the person and their family - the members here do and we all help each other with ideas and sympathy
    so keep posting
    best wishes to you all
    And all shall be well and
    All manner of thing shall be well
    Julian of Norwich & T S Eliot

  3. #3
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    [QUOTE=Langleys10;1361091]My husband was diagnosed with Alzheimer's in June at the age of 53. We have two teenagers, 17 and 15 and it has been devastating. I thought having a diagnosis would help us understand and deal with his personality changes, but I'm not sure it has. And why does everyone seem to think that Alzheimer's is only a dodgy memory or deafness! He lost spacial awareness quite early on so I sold his car and he is now pretty much house-bound. We were recently allocated a social worker and she has been brilliant and recognises that he is lonely and isolated, as I am at work and our children are at school, so we are getting regular lunch time attendances from a carer, to make sure he eats, has companionship and gets out for a walk or some exercise. I'm not sure the drugs are doing anything at all. Although we have no prognosis, which I guess is due to his age, my concern is also very much for our children, both of whom sit exams next spring/summer. I want to tell the school, but one of them is quite adamant that the school should not be told. What do you think?[/QUOTE

    He is so young, and you are probably all still in shock.It takes time to process and come to terms with a diagnosis like this, not just for the person with dementia but for family members. Acceptance makes it easier to cope, to focus on what you have now but it often doesn't come quickly or easily ! Be patient with yourself. I agree with Shedrech re the school. I am also an ex teacher. As such I would have been horrified to think that one of our pupils was going through such a tough time and I couldn't keep an eye on them, or warn other members of staff that any difficult or unusual behaviours might be coming from stress. I would also tell the school about your teenagers embarrassment and the need for discretion.

  4. #4
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    Hi

    Like your husband I was diagnosed in my mid 50s. My children were/ are in their 20s.
    You said that you sold your husbands car. Did you know that if DVLA decide he cannot hold a license he will qualify for a bus pass? I use mine for local familiar journeys alone and with my wife for longer ones. Today we are going from crystal palace into central London to the theatre using it.
    I was a teacher and I would say urge your son to let the school know your husband's diagnosis so appropriate pastoral support can be offered.
    Regards
    John

    sent from my mobile

  5. #5
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    Hi from the same position

    That could have been me writing that. My husband was diagnosed aged 50 ( although they are now querying that it may be Huntingtons) I have 2 teenage girls doing GCSEs and A levels this year. Please please ignore what your child is saying and contact the school. I asked for a meeting with key teachers for both girls at the same time, so I only had to talk about it once. It means school are aware of the stresses they are going through. They don't get treated any differently but if 1 of them needs time out they get it without question. It's a huge huge thing they are dealing with, school needs to know. There's no help for them out there, nothing specific to their age group. My daughter found that difficult so tried to start a Facebook group for people the same age to just chat.
    I met a lovely lady via TP who has helped me a lot as it's good to have people to talk to.
    If you need to chat please don't hesitate to get in touch xx

  6. #6
    Volunteer Moderator jaymor's Avatar
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    Two sites you may find useful. They are aimed at giving support to young carers.



    Site for up to 16 years olds - www.babble.carers.org

    Site for carers 16 to 25 - www.matter.carers.org
    Jay

    Volunteer Moderator and former Carer.

    Feelings are much like waves, we can't stop them from coming but we can chose which ones to surf.

  7. #7
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    Hello from the friend in the same position

    As pb46 said , let the school know. My husband diagnosed 2.5 years ago with alz at 59 , our youngest is 16 and taking gcse this year. She is doing mocks this week and having the biggest wobbles ever! The head of year has been a godsend and has given our daughter soo much support to get her through. The key part being a time out card. If it gets to much she puts card on her desk and has time out seperate to recover.
    Meeting an amazing friend through here has been massive support, we met up in November and are currently planning next one!
    Here anytine for support! X

  8. #8
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    Thank you all

    Wow! What a response to my first post. Thanks to you all for your amazing kindness and generous support. I have arranged to speak with our SW who has agreed to speak to the school, but maybe I will ask for a meeting with the school and the SW together. our 15 year old is really going through it at the moment ..

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