New member - what to do...

Discussion in 'ARCHIVE FORUM: Support discussions' started by Conrad, Jan 15, 2007.

  1. Conrad

    Conrad Registered User

    Jan 15, 2007
    16
    Hi there,

    Just found this forum and seen that a lot of people are going through similar experiences to us.

    We have an aunt who's been diagnosed with Alzheimers and whose deterioration has been fairly rapid over the last six months or so.

    She lives alone and social services have just held a meeting about her care (we live about 1 hour away) where the doctor involved called us and said we should think about a care home but the social workers/carers seem to want to keep her at home getting her a personal alarm and checking on her three times a day.

    We would be happier if she was in a care home near where we live but she is adamant (when she is lucid) that she wants to stay in her house.

    She doesn't eat or wash properly, is depressed, has started small fires and been burgled before and is on an enhanced CPA.

    Does anybody know what happens if this stand off continues? We feel social services are waiting (why? I don't know) for her to have an accident and be hospitalised before they will consider a care home.

    Has anyone else had to resolve this situation where a person who is otherwise not considered capable, is allowed to decide to stay in their own home to the dtriment of their existence?

    Any comments would be of interest.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,658
    Kent
    Hi Conrad, Welcome to TP.
    All I can suggest is you emphasize your fear that your aunt is `at risk` if she continues to live alone.
    I don`t understand the stand the social workers are taking if the GP has already suggested she may be better cared for in a care home.
    Sometimes people are too idealistic, but are not prepared to take responsibility for possible consequences.
    Although I feel desperately sorry for your aunt, who obviously wants to remain independent, I would challenge this idealism. Good luck. Sylvia
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #3 Margarita, Jan 15, 2007
    Last edited: Jan 15, 2007
    I would say it depends if your self funded or not .

    I say this because we are not self funded , (mind you I may be wrong )

    But as I see it my mother social worker say that she has to take in to consideration in what my mother wants going in to care home or not and my mother want to live with me they have to repect my mother view , as I can still cope with support from social services , mum can live with me .

    As I think if your self funded you could over rule the SW as one is paying they own way , so SW can not intervene, seeing that your aunt does not want to go in to care home , maybe a bit harder for you as you may have to force her and as social services are on her side to keep her at home , then on the flip side social services would say keep her at home as its more cheaper then care home they are funding it, am not sure where you stand on that if self funding and makeing a person go into a care home if they say no . Do you have EPOA for your aunt ?

    Someone ales my other more help
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Conrad. My personal thoughts would be that funding should be the LAST issue to consider - when someone reaches the point that their personal safety is compromised ......

    My perception is that SSD generally try to 'keep people in their own homes' (in the name of retaining independence and 'respecting rights' - but if that indepedence reaches the point of putting one's own life at risk?????)

    Was anyone from the family (or other agencies aside from SSD) invited to the meeting?

    Just my thoughts...

    Love, Karen, x
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    #5 jenniferpa, Jan 15, 2007
    Last edited: Jan 15, 2007
    Hi Conrad and welcome to TP.

    I looked up "enhanced CPA" because I'm not familiar with it. Did your Aunt have mental health issues before the AD diagnosis or did the CPA come after? From what I read and enhanced CPA should give her more support than social services are offering, although I imagine it depends on her area. The problem that social services (and you) will have is if she has lucid periods and says she deosn't want to go into residential care, there is nothing you or they can do without her being "sectioned". Now, she may be a candidate for that, or she may not, but generally everyone is very unwilling to start something like that until there is a clear and constant danger.

    Is it possible that your aunt has an unrealistic view of residential facilities? I think that is quite common, and in some cases well justified, but there are other homes which offer much more than "warehousing". Would it be possible for you to reseach homes and maybe take her on a few visits?

    Jennifer
     
  6. Conrad

    Conrad Registered User

    Jan 15, 2007
    16
    Thanks to everyone for replying - you've all addressed many of the issues that have come up.

    Although my wife's mother (aunt's sister) was at the social services meeting, she is nearly eighty, and I think they are not taking her input seriously enough or she through politeness is not being forcible with them.

    We've decided that my wife, will also attend the meetings from now on.

    My aunt will be self-funded, at least at first, but despite having saved money for her old age she insists she will not move to a home nearer to us. She wants us to move to be near her.

    The Enhanced CPA (care programme approach) is about two months old. Although she didn't have mental health issues before the Alzheimers, she was never what you would term an 'easy' person and seems to have been able to exert a will of iron over her sisters to the point that they are still reluctant to tackle her.

    She is probably not very 'emotionally intelligent' and quite intransigent and makes you feel as though you are bullying her if you do anything which she doesn't want but is in her best interest - taking her car away when she crashed it and then debied she had done so.

    It's hard to discern when some of her 'cussedness' is just her normal personality or the Alzheimers.

    We're concerned that we may have to go down the 'sectioning' route which would be awful - but from being in care homes I know that lots of residents say 'I don't want to be here...' - Can they all have been sectioned? Surely not?
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    I think it's true that some care home residents, particularly those with dementia, will say "I want to go home". but if you delve more deeply they are actually often talking about a childhood home: in other words, it's a desire to return to a time when they felt safe, not their most recent home.

    Jennifer
     
  8. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Conrad

    What a difficult position you are in. I don't know if I can add much to what has been said by others on TP. I would say that if you know in your heart that what should be done is in the best interests of your aunt you should do it, tough love is exactly that, and we have all had to face difficult decisions. I am constantly amazed by how easy difficult decisions are once they are made and how often they turn out for the best.

    I hope that you resolve the situation knowing that you have given it your best shot.

    Dick
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #9 Margarita, Jan 16, 2007
    Last edited: Jan 16, 2007

    I find that a interesting question that I can not answer , but have wonder in the past from I have seen when my mother was in a emergency nurseling care home for 3 mouths .

    One lady that was there was always getting her coat saying she wanted to go home , she told me stories about her children, grandchildren. then 6 weeks later , she was gone they told me only that she had been moved . 6 mouths later at a garden party at mum AZ day canter I was really amazed to see that she had been attending the AZ day centre , she did not remember me could not quite work out where she was staying .

    Another lady who daughter left her there , she really hated it and wanted to go home all the time use to get very upset wanting to go home , I use to see her daughter taking her out in wheelchair down our local market street , weeks later I saw a nurse from the home that told me she had died .


    Both new they surrounding, both wanted to go home. 2nd woman must have been section because daughter lived far out of london , while mother lived in fulham , and mother lived alone and could not care for herself at home .

    while other lady family all lived in fulham
     
  10. Conrad

    Conrad Registered User

    Jan 15, 2007
    16
    Thanks again everyone. It's comforting to know that others understand the difficulties that arise.

    Jennifer, your thoughts were very interesting because although they often are talking about an 'historical' or 'imaginary' home what do you do when you can't be certain of that?

    What do you do when you suspect they are talking about their literal, last home and that basically, if you don't take them home - is that false imprisonment, kidnapping?

    I don't know, I know it sounds very melodramatic, but she is still a real person and her rights need defending.

    If the Social Worker is defending her rights, being her advocate, keeping her in her own home then that's fine - but not if she's a danger to herself.

    I worry that they may be protecting her 'rights' more than her 'body', her physical safety.

    And I 'know' as much as anyone can, that when the social services decide they can no longer care for her in her own home, she will still say 'I don't want to go in a home'

    Do people 'trick'/pressure Alzheimers patients into homes?

    Every home one goes around, they're all saying 'take me home' and we all say 'of course they say take me home'

    So, if they're sensible enough to know not to want to be in a home, how do they get in there in the first place?

    I guess I'm going round in circles, it's all chicken and egg!

    We want the best for my wife's aunt, she crys in front of people, she says she wants to kill herself, she says she is lonely but she also says 'I don't want to go in a home, you have to come and live with me'. That isn't going to happen so there we are stuck in this Catch 22.

    Where she is deemed well enough to say she wants to be in her house even though it is making her desperately unhappy but she doesn't have the mental capacity to act! She doesn't make an intellectual connection between being alone and being lonely - so she can't see that being with others may help her

    To be honest this is not down to the Alzheimers - we wanted her to move nearer to us for 20 years and she wouldn't and she was miserable then!

    I don't think she has ever had the intellectal ca[pacity to learn how to improve her life or maybe she's just been too depressed her whole life?

    It's sad - even now it seems we still can't help her, she is being encouraged to block any hope of a better existence.
     
  11. lou lou

    lou lou Registered User

    Nov 9, 2005
    46
    London
    I really feel for you in this situation. My mum was admitted to hospital who then wanted to discharge her back home because that was what she said she wanted. The hospital doctor decided she had the right to make that choice despite her dementia. My brother and I decided she could not make that decision at such extreme cost in terms of her personal safety and welfare. We had to prevent them from discharging her by insisting they did a proper risk/needs assessment.( And also by taking her house keys away from her)

    In the end it was the ward OT (Occupational Therapist) who came up trumps having taken my mum on a home visit to assess her capacity to care for herself at home. Her report left them in no doubt about mum's capacity to self care.

    She couldn't. She didn't know her way around the house she had been living in for 45 years. She was hallucinating. She identified a wicker basket as her commode. She had to be carried up the stairs by the ambulance crew not something I could ever do. She'd never have left the house again. Her lack of short term memory meant she didn't eat. She couldn't wash or dress herself, couldn't manage buttons, telephones, the TV remote etc. Heck she couldn't work out to stand backwards with her frame in order to open a door. (A neighbour had found her yelling because she couldn't get out of her kitchen just because she was standing against the door on her walking frame).

    At the time she was still lucid enough to be demanding that she be allowed to return to her own home. My brother wrote to the consultant saying he would hold him personally responsible for any harm to my mother if he discharged her into an unsafe environment.

    I had been living with my mother in order for her to remain in her own home but I myself was ill at the time. Even with carers going in three times a day she couldn't cope. They offered to go in 5 times a day but she could still fall or scald herself in the intervening time she was unsupervised.

    I guess it's a different matter if someone is currently in their own home.

    Your aunt should definitely be seen by a psychogeriatrician and you should ask for a risk assessment and an ADL (Activities of Daily Living) assessment.

    Your aunt is morally your responsibility but legally the responsibility of social services if she is unable to care for herself at home.

    It is impossible to know the point at which someone no longer has the capacity to make their own choices especially as people with dementia can fluctuate and have more lucid periods. Any of us can be truculent and difficult but self neglect and risk of harm to this extent has to be addressed.

    I had been on at my mother for years to move house. One of my brothers insisted that she would make a sensible choice when she knew she had to but eventually she lost the right to make that decision and we had to make it for her. It was not done without grinding anguish and I still feel guilty as hell seeing my mum in the nursing home but when I have my thinking head on I know it is the right decision.

    Kind regards to all

    Lou Lou
     
  12. Conrad

    Conrad Registered User

    Jan 15, 2007
    16
    Thank you Lou Lou

    You've hit the nail on the head. Your situation sounds terribly similar and we fear that social services are (hopefully not deliberately?) provoking a situation where she will come to harm and be hospitalised, thus relieving them of any responsibilty for her and her care.

    We don't want her to have to fall or get robbed again just to bring this situation to a head.

    I find myself wondering if the 'department' concerned are so worried about any potential legal repurcussions of infringing her human rights by putting her in a home that they would rather she was robbed, burnt, mugged, pushed down the stairs and starved before they intervene.

    They don't want to work in the 'grey'areas - they just want it all cut and dried-

    "she's gaga - she goes in a home"

    "she's half-gaga? - come back when she's fully gaga"

    Would they do it with their own mothers?
     
  13. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    I found this an interesting thread to read.
    The problems listed are all sounding like my Grandma.

    She can barely hold a conversation anymore; is lucky to have a bath twice a week if mum & I can manage it between us (disabilities); she can't operate the television remote anymore; she sometimes picks it up and thinks it the telephone then wonders why no one speaks to her at the other end. She can't make a cuppa for herself. She never manages to make herself a meal anymore.

    She's left the gas leaking from the gas fire when she's turned it off; she has the heating & fire on so much she is paying over £100 a month on her Direct Debit to the Gas Board!!! She signed up to change companies for Gas & Electric, not having a clue what the hell she was doing. When the paperwork arrived, she didn't have a clue what it was for & denied all knowledge of having signed up for anything in the first place.

    She's fallen downstairs & broken her wrist. But because she recovered from that, she's unlikely to do it again?!

    She is eating so little its a wonder she's still alive but we can't get someone to go in at lunchtime because the meal is made by a private company & not ourselves. Its a nutritionally balanced meal but as we haven't made it, no one will make sure she gets it. Its left on the step sometimes if she can't remember where she put the key when the guy arrives to deliver it for her.

    The crooks of the matter is that SS say we can't consider residential care because she's not a risk to herself, despite all these things. Her hygiene levels have gone out the window & she's nearly blown herself & her neighbours sky high with gas build up, but she's not a risk to herself. We're wondering whether she has to break a hip/her neck/do some serious damage before SS will consider her worthy of residential care. A nursing home near me said they would take her as she is, but the SS where we live does not have the same rules as SS where Gran lives.

    The whole thing stinks; when you think that the guy from SS told us that Gran MUST know that he was coming to see her, he couldn't see her if she didn't know, it makes you wonder if they really understand what dementia is & how it affects people. How on earth is an 86 year old in late stage Alzheimers meant to remember that someone is coming to see her next week/tomorrow/in one hour?!?!
     
  14. Splat88

    Splat88 Registered User

    Jul 13, 2005
    176
    Essex
    Not just SS people either, I had to seriously wonder about our GP after he gave me a blood test form for MIL that needs to be a fasting blood test.


    How can I get her to not drink tea, then? I asked.
    Its easy, came the reply, put her to bed and take her as soon as she wakes.

    Yes, but what if she gets up in the night, as she has a habit of, she can get herself tea, a biscuit, some sweets, anything, and I wouldn't know.

    I can't hide everything in the house, and that's without the stiff she may have secereted about her room!! I still haven't solved this one yet.

    But really, wouldn't you think her GP would understand?
     
  15. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi Conrad

    your story is familiar!

    My Aunt lived an hour away. She deteriorated rapidly within a matter of months. Despite leaving the gas on, leaving cigarette ends on piles of newspapers, not being able to handle money (would hand her purse to cashier in supermarket etc), trying to drive the wrong way down the Mersey tunnel, not able to prepare meals etc etc, we were told there was nothing that could be done unless my Aunt agreed to it.

    We didn't even manage to get SS involved - apart from making notes over the telephone! grrrrrrr!

    Angels were obviously watching out for her on the day she drove through red lights and stopped apparently having had another TIA. On that occasion she ended up in hospital but discharged herself the next morning.

    And yes, eventually she ended up in hospital again from where she went into a care home - absolutely no question at that stage.

    No-one here would want to deprive anyone of being able to choose but it seems that the professionals are just not able to understand that by staying at home they are not helping that person or anyone associated with them. Something needs to change.

    Kriss
     

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