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  1. #1
    Registered User
    Join Date
    Jul 2008
    Posts
    113

    Discrimination against Dementia sufferers

    Hi everyone
    Time for an update and a rant. My mum has vascular dementia and after a rapid deterioration following a TIA she was admitted into a NH on an emergency placement. She had a major stroke in August that left her with decreased mobility in her left leg. In hospital she was deemed to be unable to meet the criteria for rehab because she would not be able to undergo 45 mins sessions of Physio and be able to remember the exercises.
    When she got back to the NH they referred her to the community physio team for advice and exercises. That was in September and we're still waiting.
    I got very frustrated and with the advice and recommendation of the NH manager have engaged a private neuro-physio who is willing to work with dementia patients. It's not cheap (£80 a session) but mum had her first session yesterday and the physio was really pleased. Mum actually walked with a frame after 3 months of wheelchairs and the physio thinks that she will be able to regain mobility with her frame. She was very positive and will work with mum twice a week for the next month. Expensive yes- worth it - every penny ( I'm grateful I can afford it ).
    My question is- why are Dementia sufferers discriminated against because they don't meet the criteria applied for physio patients. It's not fair that the only way we can get mum on her feet is by paying a lot of money for private treatment.
    It's like Diane B's petition for dementia nurses in the NHS.
    When is the government going to wake up? There are 750000 people with a diagnosis of dementia. What about the others who are not diagnosed?
    My mother's GP was aware of her memory problems but mum wouldn't have any tests. When it got to the point where mum was having episodes of being admitted to hospital for breathing problems I spoke with her GP. She said that to give mum tests would be traumatic and did not see the point? So if she had not had the strokes and been diagnosed she would have been one of the silent majority who remain undiagnosed.
    I don't know what the solution is but just wanted to share my thoughts and feelings. I cannot decsribe how much support I get from TP even if I don't post that often
    Love
    Tarika
     

  2. #2
    My question is- why are Dementia sufferers discriminated against because they don't meet the criteria applied for physio patients
    That must depend on your local authority. As in my local authority proved a home for older people and people with dementia over three floors, with the ground floor providing respite and rehabilitation services and has the most up to date equipment and facilities including a hydrotherapy pool , nursling care is provided on the upper two floors.
    Last edited by Margarita; 27-11-2008 at 09:29 PM.
    "You never know how strong you are until being strong is your only option."
    Author: Unknown

    Each person experiences dementia in their own individual way.
     

  3. #3
    I have to agree with Margarita that your poor mum is another victim of the postcode lottery. Two years ago my husband suffering from LBD was able to have an OT visit the home twice a week for two months to help him with his mobility problems. This was paid for by the Local Health Authority. He also has severe memory problems and could not remember the excercises. The visiting OT taught me the excercises so that I could do them with my husband.

    It seems to be the same with many things. I am so lucky to live in the area I do as we also have free incontinence Teena pants which have been such a help, yet other TPers cannot get the pants and have to use pads which are not suitable for their needs!


    xxTinaT
     

  4. #4
    yet other TPers cannot get the pants and have to use pads which are not suitable for their needs!

    That is so true, because my mother can't get them free in my area.
    Last edited by Margarita; 27-11-2008 at 09:41 PM.
    "You never know how strong you are until being strong is your only option."
    Author: Unknown

    Each person experiences dementia in their own individual way.
     

  5. #5
    Account Closed
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    Nov 2007
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    5,550
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    1

    Dear Tina

    TPers cannot get the pants and have to use pads which are not suitable for their needs!

    Please listen to me, Please
    Get the sheaths.
    PM me, yes I am open again.
    They are free on NH
    Only trying to help X
    Barb XX
     

  6. #6
    Account Closed
    Join Date
    Nov 2007
    Posts
    5,550
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    1

    Dear Maggie

    That is so true, because my mother can't get them free in my area.

    Get in touch with the Incontinance advisory Service.
    If men, like my Ron can get free sheaths and bags, your mum should get the same. Ladies stuff

    Wishing you luck

    Barb XX
     

  7. #7
    Registered User
    Join Date
    Nov 2008
    Location
    North London
    Posts
    36

    Smile

    Does anyone know which is the best area to reside in North London to be able to get best services for Arthur aged 80,daughter Linsey aged 56,son in law Rick aged 58,grand
    daughter aged 37,grandson in law aged 35 and great grandson aged 2.We are currently renting,so can move home more easily.

    Where do I go to find out how to upload photos to this site?

    Linsey
     

  8. #8
    Registered User
    Join Date
    Jan 2004
    Location
    near London
    Posts
    12,413
    Blog Entries
    41
    Hi Linsey

    take a look at http://www.alzheimers.org.uk/talking...&documentID=87

    There are loads of help files [aka 'Tutorials' here:
    http://www.alzheimers.org.uk/talking...p?categoryID=2

    please yell if you need more info.

    key point with photos these days is not to try to put up the huge ones that modern cameras can produce... they will be too big in every way and TP won't accept them. Try to resize them to around 600 pixels across.
    Bruce

    I'm still a Carer.

    "I don't suppose I'll see you much more. We had lovely times. I love you very much." Jan's words, October 2000

    "You'll take care of my daughter, won't you?" an ailing mother's words, 2013

    "I always thought you were thick" an ailing mother's words to me, 2013. How right you are….
     

  9. #9
    If men, like my Ron can get free sheaths and bags, your mum should get the same. Ladies stuff
    I was thinking that also about my mother. But my mother very challenging in not wanting to give up going to the toilet, not wanting to wear those massive pads that strap around the hips, only in the last few months will mum wear them for night time, but she still wears normal knickers over them, still pull them down to go to the toilet, lucky the strap to not tare of.

    During the day she wears those Tena pull up knickers, which she also hated to wear when mum first started to became incontinent,as I keep mum very socially active outside the home with day centres , Will that my theory, because mum use to tell me that people at day centre would know she wearing pads because they will notice it, then mum would wet herself at day centre, there just no logic to my mother way of thinking .

    Thinking about it my mother being fighting within herself about this whole incontinent thing, since 02 when she was told she had AZ was double incontinent, still would not wear pads back then.

    Exbixa medication help control the incontinent for 2 year, may be also because her cholesterol, diabetic medication was more regulated in taking the right amount by me , but then it started all over again, but lucky not double , only few time after mum been very constipated. Transition in to pads seen a really hard stage. but finally mum excepting them.
    Last edited by Margarita; 28-11-2008 at 11:32 AM.
    "You never know how strong you are until being strong is your only option."
    Author: Unknown

    Each person experiences dementia in their own individual way.
     

  10. #10
    New User
    Join Date
    Jan 2013
    Location
    Carterton,Oxford ,UK
    Posts
    3

    Nothing is wrong!!?

    Hi my name is Nick,and i was diagnosed with Pseudodmentia.Some2 yrs ago.And my main problem is no one (except my doctor) beleives me! I go to the gym twice a week and it can be a nightmare.The staff are nice ,as they know something is wrong.But i,dont think they know what.As my doctor gave me a proscription for the gym.And put deppression ?
    I have a lady come out once a week for 3 hours,to make sure all is okay with food and any paper work.Any more hours i need i will have to pay for.
    I live on my own,and i,m just 54 yrs old.
    So i kind of understand how you feel.
    Hope your mother does not get any worse Tarika.
    Kind regrads Mr N Richardson.
     

 

 

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