1. rjmcl

    rjmcl Registered User

    Oct 2, 2006
    My mum has AD and has been deteriorating quite rapidly over the past 6 months. She lives alone in a 2 storey house, and we have been gradually increasing the level of care to enable her to stay at home. She has always said that she does not 'want to go into a home', and still says that during her more lucid periods. At present mum is in hospital following a fall at home - no injuries but extremely confused and now incontinent. The doctors, OT's and Social Worker say it would be unsafe for her to go back to her own home and they are now in the process of looking for a long term care place. I have EPA and my understanding is that I can make welfare decisions when mum is 'incapable'.
    Mum is still capable of making decisions and is quite adamant and consistent in her desire to go back to her own home. Its just that her decision is counter to everyone elses opinion. I believe we could not manage to support her at home any more. How can I make an EPA decision against her express wishes? No doubt the doctors will sign a piece of paper saying she is incapable - because her opinion disagreees with theirs ( and objective reality). I am not sure if I have a question for the forum, just wanted to express my concern at having to make a decision against mums wishes.

  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Richard, As I see it, your duty is to act in mum's best interest - to look after her safety. If you do not feel that it is possible to support her at home any longer, then you need to look to residential care, Do not feel guilty about going against her wishes - you have to keep her safe.
    Love Helen
  3. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Hi Richard

    I agree with Helen. It sounds as though, sadly, you have no real choice in the matter. My understanding is also that the present EPAs only cover financial decisions, and the decision for your mum to enter residential care is not a financial one - although obviously financial decisions will come into play when funding is looked at. I believe the replacements for EPAs will cover more than finances but the new powers will not over ride EPAs which are already held.

    I know how hard it is to see your mum go into a home as I have been through it myself. However, there often comes a time when you can't do anything else, and it sounds as though you have reached that point.

  4. Áine

    Áine Registered User

    Hi Richard

    It's a year ago yesterday that I put some of dad's clothes into a bag, took his hand and led him out of his armchair by the fire and to a care home. He'd also always said he wanted to stay in his own home. He didn't know what was happening and didn't understand why. He trusted me so he followed me without protesting. I'll live with the horror of that until I also die.

    ....... the thing is though, as the others have said. What are the options? Would I have felt any less guilty had he stayed at home and fallen on the fire (which he increasingly looked like he was going to do) or set fire to the house, or gone out and got himself knocked down or mugged, or left his door open and people broken in and hurt him (all distinct possibilities).

    It's a lousy decision to make ....... but all the options are lousy too :(
  5. mel

    mel Registered User

    Apr 30, 2006
    oh Áine......your comment brought tears to my eyes.......you really did the best thing for your dad but I understand how you feel........

    Richard I don't envy you.....I had to come to the same decision over mum and it breaks your heart. However my mum was at the stage where she didn't know where she was anyway.....but i found a lovely home for her ....but sadly she died before the transfer was made.

    Take care
    Love Wendy xx
  6. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    AFAIK an EPA does not permit the Attorney to make welfare decisions on the behalf of the Donor - only financial ones.
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Yes, I agree with you there, although I think the replacements for the EPA may have something along those lines. This is purely a decision a child has to make for their parent, and the EPA doesn't really come into it. The only way it would play a part would be in funding issues.

  8. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Nebiroth & Noelphobic

    Richard is in Scotland, and here we do have Welfare POA.

    Richard, if you have this, you do have the right to make decisions on behalf of your mum. It has to be in her best interests, but bearing in mind what she would have wanted for herself.

    Sorry, doesn't make the decision any easier for you. I'm sure you'll do the best you can for your mum.

    Áine, I understand the horror of the decision you had to make, I dread having to make that decision for John. But it was the right decision, you had to keep your dad safe.

  9. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    Thanks for pointing that out Skye. I did know there were some differences in Scotland, but hadn't noticed that Richard was there :eek:
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Áine, you put that beautifully .... will try to keep that with me for 'when and if' ....

    On a logical level the decisions we are faced with may seem straightforward - it's the damned emotions that cause havoc.......:(

    Richard, I think I have used the analogy before whereby parents have to do - or make sure their children do - lots of things which may appear to be against their wishes but are absolutely necessary for their well-being - attending school, visiting the dentist - not trying to make light of the enormity of this situation just a different way of looking at it ..... if it helps at all...

    Love, Karen, x
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Richard, as others have said: damned if you do, damned if you don't.

    I don't know if it's any help, but I'll post my own experience here.

    My mother has had several stokes, but still has very lucid periods sometimes. Most of her brain damage is related to short-term memory loss, so she can still frame and express quite complex thoughts (even if she forgets them the next second). I moved her to an extra-care flat attached to a nursing home and that worked for a year. Occasionaly she would say to me "I'm not going into that nursing home with those loonies" and all I could say was "I won't do it unless you're so far gone that you're unaware of it" ( I was not prepared to promise not to do something that was probably inevitable). Sadly, she has become much more unstable on her feet, and several falls occurred which ended up with her spending 2 weeks in hospital. She came out into her existing flat, but within 5 days had another fall, so back to hospital. I finally got her out, but even with me there 24/7 she had 2 more falls, and at that point I realised she simply couldn't continue in her own place, so managed to get her into the nursing home at 1 days notice (I had to come home).

    The point of this somewhat convoluted story is that on Tuesday one of her carers got her on the phone for me, and she was exceptionally chipper: full of stories of the nursing home, and the people who were there, and their odd behaviour, and very appreciative of her carers. So, although she still doesn't really think she's as "loony" as the other residents, (and she's probably not, at least in certain areas) she has settled very well and even gets some entertainment from the antics of others there. I'm not certain she's entirely aware that she's in an actual nursing home (there was some talk of school - she was a headmistress in her former life) yet she much less depressed than she was when she was living alone (well, kind of alone: she had carers coming in 5 times a day, a cleaner and her meals delivered).

    I think, if you asked her, she'd still say "I'm not going into a home", even though she's in one!

    Regarding making a decsion which is contrary to your mother's expressed wishes: I think we have all done this at times, even when we had no real legal basis to do so. From the outside looking in, going on what you have reported, I think that, uncomfortable though it may be, you're going to have to make a decision that keeps her safe. If you don't, I think that decision may be taken out of your hands, because my understanding is that the primary responsibility of all concerned is your Mother's safety and well-being, and her current living situation does not sound as if it's going to meet her needs.

  12. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Jennifer, really glad to hear that your mum is enjoying her new surroundings. That's a real result, well done.

    Richard, it felt awful when we moved my mum from her home to a form of 'care' home, some years ago. It felt like a betrayal, especially when she kept asking when she was going to go back home. Dreadful! But living on her own was an increasingly forlorn and dangerous situation. She had lost the confidence to go out because she worried about remembering the way back, and worried about remembering the names of people.

    She was at risk of falls, of fire hazards, of opening the door to strangers, of getting lost, and of depression. In the new setting she enjoyed about three or four years of a new kind of life. There were one or two new friends who came and went, there were entertainments that she didn't have to worry about transport to and for some peculiar reason, she thought she was in the same premises that she had attended when she was at teacher training college. She used to tell newcomers that she had been a student here years ago, which was a funny thing and we didn't like to correct her because it was a harmless mistake which made her feel more comfortable.

    The future won't be easy but it need not be as bleak as you fear if you find a registered care home that you can have some confidence in. Good luck
  13. rjmcl

    rjmcl Registered User

    Oct 2, 2006
    Thanks for your kind replies and support. Yes I am in Scotland and we have two sorts of Powers of Attorney up here - Welfare powers and Continuing powers. Welfare is for - well, welfare issues, medical decisions etc and the issue I face at present. Continuing is for financial arrangements and I have been running mums finances for the past while.
    I feel that you have really helped me with some of the hard decisions I will have to make.
  14. j.j

    j.j Registered User

    Jan 8, 2007
  15. Áine

    Áine Registered User

    hi j.j

    i found that until i'd got the place booked for dad all i thought about was "something needs to be done". once something was being done and the anxiety about what would happen if it wasn't done was over, that was when the horror of taking him into the home hit me. came as a big shock because i thought i would be so relieved .. and it was anything but.

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