1. capybara

    capybara Registered User

    Jan 10, 2007
    #1 capybara, Jan 13, 2007
    Last edited: Jan 13, 2007
    I only joined 2 days ago as i have set up a petition at 10 Downing street website about the decision by NICE to withdraw drugs for early and late stage Alzheimers sufferers http://petitions.pm.gov.uk/alzheimerdrugs/ would appreciate support if you can .

    My father served in the army all his life coming through the ranks and retiring as A Major M.B.E. Royal Engineers.

    My wife and I moved to North Lincolnshire about 4 years ago and all was well with him and my mother, although we were moving away from Kent where they live.

    On his first visit to us I had to meet him 20 miles away as he was lost. This was our first indication that all was not right.

    Since then his mental state declined rapidly and each time I visited he was worse.
    He too got aggressive and was prescribed Quietapine for his agitation, this helped .

    My mother who is 82 had to go into hospital leaving no one to look after my Father.

    I travelled down to Kent and bought him back here to stay with us. He was fine on the first night but on the second night he was wetting himself and terribly confused. This continued and I was getting no sleep at all. The family consulted and we decided to put him into respite care locally, while Mum was in hospital.

    This was the hardest thing I have ever had to do and it broke my heart to take him to that nursing home.

    I visited him every day and although he was not completely happy he was a lot more settled and getting the care he needed 24/7.

    We decided to contact Social Services in Kent and explain the situation especially as we were concerned about him going home with my Mum being elderly and being diagnosed with a heart problem.
    Social services agreed to do an assesment on him when he returned. This resulted in him going into full time care.

    My father did get state funding of about £300 a month but still has to pay £960.00 out of his Army Pension for his care costs absolutely disgusting!
    He has never been prescribed anything else for his Alzheimers which is terrible and why I set up my petition.
    I hope my story has helped some of you and feel free to reply if you have any more questions.
    Good Luck.
    The picture below is a plaque situated at the foot of Mount Cairngorm Scotland one of the many projects my Dad was in charge of during his career.
    Regards Mark

    Attached Files:

    • DAD2.jpg
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  2. welshflower

    welshflower Registered User

    Jan 8, 2007
    Same Position

    Hi Mark,

    I read your message this morning, and I do feel for you and your family. I went through the same situation.
    My mother called me in the middle of the night from her home and asked asked me to take her home.......... I drove there, just as soon as i dressed, and my mother ( who lives alone ) was dressed, lights all on, telling " Oh i wished you would have called to say you were coming for a visit "
    The next day she too was in a home.............. I can NEVER forget her face, and the shock every time i went to visit. " Please dont leave me hear " Please take me home !!!!!!!!!!!!!!!!!!! Still upsets me.
    Sorry to read what you have gone through too Mark, and knowing the position your father held in the Army............ just dreadful.
    Mark I was woundering if you are able to help me with a problem i have..........

    I will try and put it in a nut shell............. My eldest sister has EPA, although she has not registered her Enduring Power of Atorney with Court of Protection in London........... I have asked her, she refuses, communations have broken down. She thinks this money as her own, I found out this week, she has taken out £15000.00 from my mothers account to help pay for her daugheres wedding !!!!
    I am so mad. I have paid out of my own funds, what ever my mother needs, and requires, I have never asked my sister for ANY money............ She takes out what she wants at anytime.
    It goes deaper Mark, but if you can help me in any way, i do appreciate it.


  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Welshflower,
    May I suggest that you phone the Alzheimers society helpline 0845 300 0336 open Monday-friday; someone from the legal desk will be able to help you.
  4. capybara

    capybara Registered User

    Jan 10, 2007
    EPA problems

    Thanks for your message, in my Dads case the whole family took out EPA jointly and severally and maybe you should have done the same.
    This means we all have to act in my Dads best interests in his financial affairs this is one of the rules.

    I do know that with EPA it seems that your sister is not doing so, and all i can suggest is that you contact the Alzheimers society as suggested in the message above and definately get some legal advice which they should be able to help you with.

    Thanks and good luck
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
  6. cynron

    cynron Registered User

    Sep 26, 2005
    east sussex

    Hi Mark i have signed the petition:)

    regards cynron
  7. capybara

    capybara Registered User

    Jan 10, 2007
    Thanks for signing my petition

    HI Cynron
  8. 88alli

    88alli Registered User

    Jan 11, 2007
    I have just read your letter. I think the whole system is disgusting. I know in the future my M.I.L will have to go into a nursing home and her house will eventually have to be sold to pay for her care. I think it is disgusting. My F.I.L died suddenly when he was only 57, but he had worked hard all his life and paid all his taxes. I feel it is totally wrong for the government to take AD patients money away from them for their care. But it seems there is nothing anyone can do about it.
    I have signed your petition. Well done for making a stand. Any chance of you running the Country?!!
    As for prescribing for AD. My M.I.L was started on Aricept straight away and will continue to take it, there seems no problem about that where I live. (I am a Pharmacy Technician) At the privately owned D.D.P where I work (my M.I.L is not one of our patients) we have numerous patients that are prescribed meds for their AD. They have a right to treatment. It is disgusting.
    Keep your spirits up!!
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Mark
    have you been in touch with the British Legion.?
    I understand that they have plenty of money available,might be worth a try.
  10. capybara

    capybara Registered User

    Jan 10, 2007
    #10 capybara, Jan 14, 2007
    Last edited: Jan 14, 2007
    Thanks for your reply

    :rolleyes:HI Richard and Diane Thank you for your message and support. It does seem to be a postcode lottery as to whether you get Alzheimer drugs or not.

    I have pushed the care home to get my Dads medication reviewed by his Doctor so am hoping for a positive result.

    As for running the country I don't think I could do any worse than the present government.

    Kind regards
  11. capybara

    capybara Registered User

    Jan 10, 2007
    British Legion

    HI Norman
    Yes I have been in touch with the BL. Unfortunately the homes they have are too far from my Mum and brother in Kent for visiting.
    He is very settled where he is so we are quite satisfied with things.
    Thanks for your advice though

    Regards Mark

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