1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. antipodes

    antipodes Registered User

    Jun 6, 2006
    2
    Europe
    Hello all,
    Till now I have not had the opportunity to write on a forum like this but I feel that perhaps I should start sharing my personal experience as it might help others. My mother passed away from Alzheimer's disease several years ago now. She had the disease for about 7 years. Her first symptoms were forgetfulness, but then the behaviour became weird - forgetting words, names, putting things in strange places (teapot in the fridge syndrome :0) . So my dad took her to the GP who ordered a scan. They diagnosed presenile dementia which a lot of arteriosclerosis in the cervical vascular system. This diagnosis gradually became one of Alzheimer's as her condition followed a typical path.
    What annoys me is that we were not told what really to expect. I think we thought she would just go mad. But the decline is much worse, and more spectacular. We went through all types of phases - forgetting who we were, mistaking my dad for an intruder, thinking she was the victim of a plot, depression and frustration with lots of tearfulness, wandering (we lived in a fairly rural area near train lines so this was quite dangerous), inability to dress properly (we had to supervise washing, put clothes out for her and help her to dress a bit later), even speaking strange language, as if she were speaking in tongues!
    Then the speech problems abated because she could no longer speak, just groan and moan, she stopped wandering because she became very unsteady walking and eventually muscle spasms left her bedridden. Her life became one of pressure sores, home nursing, catheters, massage to abate the muscle atrophy, she was in a fetal position most of the time. The last days she could not swallow and eventually could not urinate: she developed pneumonia and kidney failure and died after a couple of days in hospital.
    I feel that in the early stages we were not given enough information on how the disease would develop, and there were no drugs available then to assist in slowing the disease. Her decline robbed her of her dignity.
    It makes me very cross when people describe anyone with a bit of memory loss as having Alzheimer's. It is a slow, cruel degenerative disorder that leaves the person withered, almost paralysed and completely vegetative. I want to ensure that the courageous people who participate in caring for a member of their family can prepare themselves for the worst so as not to have as much of an unpleasant surprise as we did. I want to emphasize to carers to look after themselves: I am sure that it was through looking after mum, that my father developed high blood pressure, diabetes and bowel cancer (which thankfully was treated).
    I wish all carers and loved ones courage in this painful journey.
     
  2. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi antipodes
    I've found that very interesting indeed.....I have had an insight into the disease as 2 of my aunts suffered the same way....You are right, though ,I don't think there is enough information on what the future may bring.
    I have chosen to care for my mum at my home ....I realise there will probably come a time when I will no longer be able to do this but I want to continue for as long as I possibly can
    Both my GP and social worker have stressed the imprtance of taking care of myself and although it isn't always easy I do my best...
    I have also learned so much from this forum and I think your views and advice will be invaluable in the light of your experience
    Love
    Wendy
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,989
    Toronto, Canada
    Hi Antipodes,
    I agree with you, it's important to be informed. I am the kind of person who absolutely has to know ahead of time. So I have read extensively on the disease and the stages & what to expect. This can be a double-edged sword at times but I much prefer that to the head-in-the-sand approach which others prefer.

    I also find some medical people are slow to give all the information, probably because some family members react badly. And the nature of the disease makes it difficult because some patients never experience some of the possibilities.

    A very good website is www.bigtreemurphy.com. I found that one to be quite inspirational. It's an old site but some things are eternal.

    Joanne
     
  4. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I was appalled by the apparent ignorance of the doctors, nurses, and social workers who were supposed to be looking after my mother, and their reluctance to believe us. Do they think everyone is a liar except for the patient herself?

    I have written to some of them, hoping that some of what I've said will make a bit of difference. I haven't written to the last social worker who hasn't even responded to the news of my mother's death. As we were supposed to be having a meeting arranged by that social worker at the hospital, I naturally let her know my mother had died, so that she wouldn't have a wasted journey, but expected at least a short message of sympathy from her. I suppose they just mark the file with the date of death and forget about it.

    She was the one who decided that it was safe to leave my mother alone at home with only 2-3 care visits a day. Why did we trust them?

    These people seem to have life-or-death powers over us, yet a few days later if they receive correspondence about the person who has died they probably can't even remember who she was.

    I find it very frightening to think of being in the power of such people.

    It's not just that they're ignorant but that they don't want to learn.

    (Of course it doesn't apply to ALL doctors, social workers etc.)

    Lila
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Jun 6, 2006
    Last edited: Jun 6, 2006
    Hi antipodes thank-you for shareing

    when you say
    I believe now that if I had not gone with my mother to Gibraltar after mum retried( 2002 ) there after dad died I would never had none that there was drugs for my mother AD , I was given the medication as soon as mum was diagnosed . I read up about Exbixa & still am in shock that its not freely available.

    In this country I am sorry to say, that medication for people with AD is like a secret society. I could not believe when I read that NICE only recommended that medication for people with AD should be available 2001 , now they are taking it away for future generation of people with AD ,that could me or you .

    Could they or would they say that to someone with cancer, that they could not have chemo yes we all know that AD is where cancer was 20 years ago.

    When mum was in respite I get blank look from carer when told them about medication for AD.

    It’s like that there is no in-between time to slow it down, that can’t happen it just make my life (as I want to care for mum) easier I have been told. Why brother I feel someties because its my mum human right to have good Quality of life no matter what the ending is like .........but to many people are closed minded when it come to medication for AD people

    See whyI think my mum quality of life has improved with medication in Tea room photo’s have posted a before after phone.


    This is for NICE :p :p :p :p :p :p :p
     
  6. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Antipodes, and welcome to Talking Point.
    Thought I called a spade a spade, till I read your posting!! Yes I agree that there does seem to be a lack of material about dementia, especially from the NHS, also a lack of willingness to discuss the progression. My mum was diagnosed many years ago with multi-infarcta dementia, and like your mother has received no medication.
    However though my mum is now in advanced stages, I think I have actually found it less scarey living it, than I did reading your description. As you know, because the illness is progressive, you move from one stage to the next, new hurdles to be overcome - it is a transition rather than a sudden change. Yes, it is hard, it is heartbreaking: but there are good times too.
    Helen
     
  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Amy, I totally agree with your quote:

    "Yes I agree that there does seem to be a lack of material about dementia, especially from the NHS, also a lack of willingness to discuss the progression."

    After several visits to mum's GP before the diagnosis and since, whilst he monitors her other health problems, he never mentions her dementia. When I've brought it up, he said, "it's not my specialism". Whilst I appreciate GPs can't know everything about every illness, a little sympathy can go a long way. He didn't offer any leaflets or websites and, I felt, had the bedside manner of Dr Crippen! I've had to find out everything I know from TP and other sources. It's vital we all post our experiences on here so that others know what's around the corner, no matter how c**p it might be. Unfortunately NICE's decision last week only adds to the grimness of it all.
     
  8. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Joanne,
    Thanks for giving this site out, I didn't know about it and it is really great!!


    Thanks Antipodes for sharing your story. It is sobering but the reality is that given time, we will all be experiencing similar things!

    Debbie
     
  9. jarnee

    jarnee Registered User

    Mar 18, 2006
    181
    leicestershire
    I have just checked out the bigtreemurphy website and struggled to get past the homepage. What a coward I am. You see, when I read the first post on this thread, it frightened me to death. I am watching my dad deteriorating in front of me and I am so very helpless. I don't want this to be happening to him. I so desperately don't !!!!
    Then, bravely, I looked at the notes on the website about the book. And I lifted this quote as it choked me completely (Hope this isn't illegal).Here is the quote:

    "I still feel the same. I still feel warm and close to him. At night when I check in on him and see his legs dawn up like a baby's, I kiss him on his forehead the way one would kiss an infant and I give him a silent blessing. I tell him every time the words fly through my brain that I love him and I am here for him. He is still somebody important to me, his illness didn't diminish that feeling in the slightest."

    That's how I will always feel about my dad. I love him and I want him back !!
    Jarnee
     
  10. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    Hi Lucille,
    I think we must have the same GP
    No interest whatsoever!!
     

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