Rights of an alzheimers patient

Discussion in 'ARCHIVE FORUM: Support discussions' started by eiggam, Jan 5, 2007.

  1. eiggam

    eiggam Registered User

    Jan 5, 2007
    45
    Can someone tell me what rights my Mum has now that She has alzheimers, has an enduring POA, lives in a Care Home, and would like a companion to sit and read to Her 3 or 4 times a week, The Care Home frown on this type of company, and asked me to write down what I want for my Mum, they will inform all other residence relatives of our wants and will let us know.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    My first response was "expletive" Frown on this type of company?? Who do they think they are? And what's it got to do with any or the other residents?

    Jennifer
     
  3. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    "ditto" Jennifers reply!

    what, why, ???????
     
  4. eiggam

    eiggam Registered User

    Jan 5, 2007
    45
    Right's of an alzheimers patient

    Many thanks for the info from nada, and jennifer and ditto to the other lady.
    What's it got to do with the other patients is how I feel.
    My mum loves company, we had a retired nurse sit when my mum took a turn for the worst, and because of round the clock care that weekend my mum is now doing fine. Then the Care Home asked for 'an emergency meeting' which took 2 weeks, the Area manager held the meeting, and told us to write down what we are asking for.
    Can anyone tell me if my mum has any right's as an alzheimers person living in a care home.
    Thank you for any info,
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Assuming you're paying for the visitor, I don't see the difference between her and any other visitor. What the care home "thinks" it can do should be in the contract, what they "can" do is something else. I have never come across a care home that limits the type of visitors, although I suppose some might limit total numbers due to logistics. Your mother may have AD but she's not in prison. Although if you have an EPA she would not be able to enter into a legally enforceable contract, since she is deemed to be legally incompetant, it doesn't mean she doesn't have rights. It's no difference to children - they can't enter a legal contract either, but it doesn't stop them from have protections. A "right to associate" would seem to me to be a basic human right and that's all you're asking for. This is controlling behaviour taken to a ridiculous degree and I suspect they're trying to intimidate you in order to make it easier on them ("she has someone reading to her, I want someone reading to my mum").

    Even if there's something in the care home contract, I do not see how it could be legally enforceable. Every care home should have a complaints procedure, but I wouldn't be surprised to find that this one doesn't - it doesn't seem to be following basic rules anyway. The problem is, as always, you want what you want (or your mum wants) but you don't want to rock the boat. Does she have a social worker? Sometimes these things are better dealt with by someone who is not part of the family.

    Have you looked the home up on http://www.csci.org.uk/ (commission for social care inspection)?

    Jennifer
     
  6. eiggam

    eiggam Registered User

    Jan 5, 2007
    45
    right's of an alzheimers patient

    Thank you Jennifer, very helpful, which brings up another question. My Mother does not have a social worker. I asked the Dr. about this 2 years ago, I was told "Your mother only needs a social worker if your mother is moved to another CARE HOME"
    My Mum had a social worker in the begining, then we moved mum out of the area due to the aweful place they put my mum for assessing. The social worker knows my mum is out of her district, and I asked if she would help me find one, she gave me phone # and I finally spoke to the phychatrist, who told me the above.
     
  7. Dina

    Dina Registered User

    Re: Spcial Worker

    My mum had a social worker, but when she moved into a home, they disowned her, because is self funding.

    So as she tries to settle into this home, she has no-one to represent her needs (apart from her children, who seem to be as confused as she is half the time!)

    I don't understand who has the right to a social worker and in what circumstances?

    This idea of someone visiting seems an excellent idea - my siblings and I have thought about it. What is the homes' problem? Do they feel that there is criticism of their care? I'd have thought they'd be glad, one less person for their staff to worry about while the visitor is there.
     
  8. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    At my Mum's NH, visitors are encouraged and everyone has their own room and may close their door if they wish. I can't see why the staff should object to somebody reading aloud to a resident in their own room or in one of the lounges. Surely that would be a good idea which would not affect anyone else and how would they even know?
    It is even possible to bring well behaved dogs into Mum's NH and this is encouraged, as it may lift the spirits of a depressed person. I think I would be unhappy with restrictions like that and would want to make some kind of formal complaint to the manager.
    Kayla
     
  9. eiggam

    eiggam Registered User

    Jan 5, 2007
    45
    Nada...Why is this complicated?

    It seems to me that the Home has something to hide, when they frown on a patient having a visitor to help the patient from being lonely. The 'right to associate' is a basic human right, (thank you Jennifer) My Mum is not in prison, she has done nothing wrong, so how is this a complicated issue Nada.

    Weather we pay for this service or find someone to do it out of the goodness of their heart, why would the Home frown on this, and make it so difficult. My Mum sit's alone, and would benefit having someone to read, or just be a companion.

    If the Home has a policy about companions, then why were we not told this, instead of having to put in writing what we are asking for. It seems childish to have to ask for a companion, for a patient who sits alone most of the time.
    Dina: Maybe it looks like criticism to them, which makes me all the more nervous of the Care there.
    Kayla: Exactly, about lifting the Spirits of a depressing desease, which takes away so many personal attributes as it is.
    So the letter is on it's way for a big consultation to the Area Manager of the whole district, as to weather my Mum can have a companion read to Her and give good back rubs, and foot massages, and hand lotion rubbed on my Mums arms and hands, well anything for comfort.
    Thank you Nada for listening.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    #10 Grannie G, Jan 6, 2007
    Last edited: Jan 6, 2007
    Pure conjecture, but I should imagine an Alzheimers Patient has more rights in his/her own home, than in a Nursing Home.
    In your own home, you are the most important individual.
    In a care home you are an equally important individual.
    Your own home is an area just for you.
    Your own room in a care home is part of a whole.
    Most care homes do have organized activities.
    I know I have criticised care homes, but even the best ones probably need to have a uniform level of care, without any suggestion of preferential treatment.

    Saying that, I honestly cannot see why anyone would object to a relative reading to a resident. If that is so, I do not understand why a known companion should not be encouraged to visit, in order to read to a resident.
    But to pay someone, unknown to the resident , might not be successful, particularly with people already losing their social skills with known friends and family. I can see the complexities of this type of arrangement.

    There is also the issue of health and safety, as well as security in a closed EMI unit.
    What was probably a very sincere request, might have highlighted many other issues.
     
  11. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My Mum sits alone for most of the day in her room, but has her television on, which she seems to take notice of. Another resident comes and sits in her room for part of the day and they chat together or just sit quietly. It seems to meet both their needs for company.
    At first, the staff kept wanting to take Mum's friend back to her room when I visited, but I stopped them doing this. After all if I had called in to see Mum at home, I wouldn't have expected her friends to leave, although they might have gone out of courtesy.
    I do think more could be done to encourage friendships amongst NH residents, as they are more understanding of each other's needs than other people. It seems that Mum and her friend really do care about each other and feel concern about the other's welfare. The only problem I can see is what would happen if the friend was moved away or died, but perhaps Mum could make a new friend.
    It has surprised me that despite Mum's frail health and often confused state of mind, she still has concern for others and maintains the social ability to make a new friend.
    Kayla
     
  12. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I am sure someone will correct me if I'm wrong, but I am sure I have read that residents in nursing or care homes aren't protected by the Human Rights Act. Shocking I know, but I believe it is true and if I can find any kind of link will post it.
     
  13. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Most things have already been covered............but just wanted to add.........that your mum has a right to confidentiality...............your mum, her circumstances or needs should not be discussed with other residents relatives!

    If i was you i would speak to the person in charge of the NH and inform them that you would consider this a breach of confidentiality.

    Love Alex x
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,873
    Kent
    Sorry Deborah if I upset you. I always thought Individual Care Plans were those provided by the Home via Individual Care Workers.
    I know you want the best for your mother, and have every right to, but even if she isn`t in an EMI unit, people entering and leaving the home have to be monitored. It is just more complicated to have outside people providing services.
    Anyone who finds a Home that provides the care they would wish for is, in my humble opinion, extremely lucky.
    I agree about the noisy lounges with TV blaring in one corner and a radio blaring in another corner. It`s ridiculous. Doesn`t your mother`s home have a seperate quiet lounge for those who want a bit of peace.
    I know Homes are not prisons, but we demand safety for very vulnerable residents. There have to be checks on people coming in and the more who do, the more monitoring it takes.
    It`s frustrating for all of us. The guilt we feel about using a home is enough to break anyone`s back, and the only way we can compensate is to fight for the best provision possible.
    I hope you manage to get the best for your mother. Love Sylvia x
     
  15. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    My mother is also in a general nursing home and we have no reliable way of knowing who visits her when we are not there. She is unable to tell us and anyone can walk in and visit anyone. They have to ring a bell after dark but other than that is an open house. There is a visitors book at the entrance but not everyone signs it - either they don't see it or they choose not to. It would actually be helpful to us if we could know who had visited her! In theory, someone could walk in off the street and get her to sign over all her worldly goods to them!
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    I'm afraid you're right and I have read the same thing: that a self-funded patient in a private home essentially gives up a lot of rights. Perhaps one of us can find a link - I seem to have lost the one I saw :eek:

    Jennifer
     
  17. eiggam

    eiggam Registered User

    Jan 5, 2007
    45
    Right's or Not Rights

    Noelphobic: This surly can’t be right... Nursing Homes or Care Homes are NOT protected by the Human Rights Act. This is an outrage, Please let me know a link if you find one. I feel like writing a member of Parliament asking this very question. If it’s true, then criminals have more rights than the elderly in Care Homes. Does any one know what the Human Rights Act covers?
    Deborah:
    your quote: " What a pathetic end to a rich and worthwhile life." should not be happening.
    Hand in there Deborah.
    I would like to say this Care Home my Mum’s at has been helpful, they do try and honor our wishes and needs, but, this last request for a companion to sit and keep my Mum company has brought in the Area Manager who say’s this request has never been asked for before, and they are not sure weather to allow it or not.

    Deborah you have spent most of your working life advocating for others, In what way? And can you tell me how one finds an advocate for an alzheimers person in a Care Home. What can an advocate do in this situation..
    Have you tried turning off the T V when you go see your Mum, if your Mum does not like being in the T V room, then it’s not asking much to make sure your Mum sits in the lounge she prefers.
    Writing your wants in a place where staff can read it, is another way.

    I think the only way better care will be given to people in these Care Home is to not only train staff who care for alzheimers people, but, the pay has to be so much higher, before the standard of care will rise to a level for the elderly to live in dignity and respect, while living out their lives.
    Most of the elderly have honored the system in paying in to the social security government, who now seem to have forgotten the very people who made it possible for so-called social security.

    With the numbers of people in this forum, power and safety in numbers can change laws.
    I am anxious to find out where the elderly stand in The Human Rights Act.
    Noelphobic.... awesome quote how to arrive after the journey, Whoo Hoo I say, let’s kick some butt, and change how the law is written for ALL Human Right’s..
    Thanks Alex, Love, maggie
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Still looking, but what I've found out so far:
    The Human Rights Act applies only to public bodies, or quasi-public bodies. Therefore a person in a private nursing home paid for by the LA is covered, a self-funded person is not. However, simply because the Human Rights Act doesn't apply, doen't mean that the person in question doesn't have human rights, if you see what I mean. There are certain rights that people have that do not have to be legislated - they just are. It does mean, however, you can't wave a piece of paper around saying "you've contravened the Human Rights Act and these are the penalties" (not suggesting you would, of course :) )

    Jennifer (still looking)
     
  19. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I couldn't agree with you more, but sadly can't see it happening. I think the same is true of care given to people in their own homes and had to write an essay recently for my OU course on the status of home care workers. I concluded by saying

    'the status of home care workers does not reflect the importance of their role. It is hard to envision this changing, until and unless society starts to value its most vulnerable members more, and with this sees their care as high priority.'

    I think exactly the same could be said of those who work in care and nursing homes.
     
  20. daughter

    daughter Registered User

    Mar 16, 2005
    824

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