“Best interests” decision

Discussion in 'I care for a person with dementia' started by Kelly84, Jun 1, 2019.

  1. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    Hi,
    I’m new to the board and feeling a bit lost about what to do!

    My mother has had dementia for a number of years, although we have struggled to get a formal diagnosis.

    She had a bad fall last year and ended up in hospital, then a care home. She was always very clear she wanted to go home, so we put in place a care package of carers 4 x a day. My sibling and I live over 5 hours away from her, and she has no family in the area.

    She managed to stay at home for about 3 weeks, but was very resistant to care. She ended up with a UTI, couldn’t stand and ended up back in hospital.

    We’ve been looking into arranging a live-in carer for her. Our hope was that if she could eat when she wanted and go to bed when she wanted she would be more accepting of help. We had a best interests call about a month ago and everyone agreed to pursue this.

    However, when the care agency went to assess her in hospital, she told them she didn’t want a stranger living in her house. She said the same thing to her advocate. It seems she might have had another UTI at the time. She’s now telling the social worker she will accept a live-in carer, but she won’t let them “boss her around”, tell her how to cook etc.

    The social worker now thinks we should re-visit the best interests decision. I think there is a significant risk that mum would refuse help from a live-in carer, and quite a big risk she might refuse the carer completely (she called the police when a night sitter came to the house while she was still at home).

    At the same time, mum cries all the time that she wants to go home. She’s just called me and threatened to kill herself if she can’t go home (she has said this a number of times).

    The hospital staff have never seen her refuse care, so they don’t understand why we want to re-visit the decision. My sibling thinks it would be cruel to let mum go home only for the care arrangement to fall apart again. If it does go wrong, no one is readily available to step in because we’re so far away, so mum might need to be sectioned.

    I just want mum to be happy and I hate the idea she might never go home - but when she did go home she kept asking when she could go home because she didn’t like how we’d had to rearrange everything. I don’t know what to think. We will probably have a best interest call next week, and I’m not sure if I should be trying to push against the social workers on this.

    Really sorry this is so long - thank you if you’ve made it to the end! Any different perspectives out there?
     
  2. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,683
    Nottinghamshire
    Welcome to DTP @Kelly84

    I think your answer is in the fact that your mum was asking to go home when she was home. “Home” to a person with dementia is a place where they feel safe. It’s probably, in your mum’s mind, the place where all her family live and I doubt if she recognises her home anymore.

    When my dad started to ask where he was when he was at home I knew it was time to consider a carehome. I didn’t want to move him from his lovely bungalow that he’d renovated when he moved in ten years before so I dragged my feet and tried carers at home, which worked for about 2 months before he became really lost. Looking back I realise this was more because I didn’t want dad to have to leave his home than because it was the right thing for dad. I lived 5 minutes from dad but still I couldn’t manage his needs even with 4 care visits a day.

    So dad ended up in hospital and from there went into a carehome where he was well looked after for the rest of his life. I don’t think a live in carer could’ve coped with dad’s needs. He could be resistant to care and medication and it really needed a whole team of people.

    In dad’s carehome if someone was resistant to doing something they would keep trying - so eventually most things got done. Mealtimes were leisurely and there were always snacks on offer for people who’d refused a meal. I believe that dad was in the best place and as content as he could be with this awful disease.
     
  3. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,341
    Female
    Possibly she is resistant to a carer in her own home, because it's her territory and she has a memory of being independent there, and she doesn't want strangers intruding. Whereas hospital is neutral territory, and she's fine with accepting care, which makes me think it's possible that she would also accept care in a care home setting. In your position I'd be considering a care home - could you now request a month's respite in a care home to see how she gets on?

    I think you may also have to reduce your expectations. It is possible your mother just won't be happy with any arrangement, because it's the dementia making her unhappy and combative, not the setting. You cant predict how she will behave, so you just have to try and see what works. Let us know what happens.
     
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    852
    I'm afraid that persons with dementia are often not happy wherever they are. It sounds to me that the time for residential care has arrived. The situation was similar to my mother-in-law. She had been on her own with carers but she became a falls risk and she could not cope on her own. The problem was not when the carers were there, it was when they weren't there especially overnight. My mother-in-law refused personal care ,it was only when she was in the home, with a full team with the time to deal with her that she was bathed. I agree with your sibling on this. It sounds like another care package will ultimately fail
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    It sounds like what your mum wants is to go back to the way things were before dementia and does not understand that this is impossible.

    There comes a time when when you have to change from trying to implement their wants and desires to enforcing their needs and I rather think that time has come for your mum
     
  6. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    Thank you all for your replies - they are really helpful.

    Mum has said of her time at home “they took me to a place and said it was my home but I didn’t like it”, so you’re absolutely right that her idea of “home” and the reality are different.

    She has already been in a care home for 6 weeks or so and didn’t resist care there either.

    I think I had hoped that we could give her another try at home to see if it worked, but I hadn’t really thought through what the back-up plan would be if it failed.

    Thanks again for all your perspectives on this. I think I am better armed with some questions for the best interests call. The main pushback is from the nurses on the ward, but if I can get over my guilt that I can’t fix mum, I think the social workers and us are on the same page
     
  7. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    If you ask her what her "home" is like, you may well find that she is not thinking about her own home that she moved from, but is describing her childhood home or some other place
     
  8. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,341
    Female
    I think the fact that the nurses find she accepts care could be seen as actually strengthening your case that she is better in an institutional setting. It could be that she feels safer there because there are always people around to help, and she isn't trying to reconcile 'home not being home'. I know that within weeks of moving to the care home my mother's anxiety more or less disappeared and she is very content there, presumably it gives a feeling of security.
     
  9. Bod

    Bod Registered User

    Aug 30, 2013
    1,111
    It would be better for all, for her to stay where she is now.

    Bod
     
  10. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    We had the best interests call today.

    The nurse was quite sharp at the start and questioned why we were even re-visiting the decision, but by the end of the call she agreed that a care home placement was the best option. I’m pleased that she kept an open mind and listened to what was said.

    I found it really tough and was quite upset when it was over. I feel like I’ve let mum down, but I keep reminding myself how bad it was when she actually was at home for those few weeks.

    I’m going to see mum this weekend and am dreading it. How do I tell her she’s not going home? Her advocate is going to see her this afternoon to break the news to her.
     
  11. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    852
    Tell her she needs to convalesce in a home before she can go back home. And keep telling her that, hopefully the advocate is singing the same. My mother-in-law was told she couldn't go home because the doctor said she wasn't well enough. The reality was she was never going back home.
     
  12. Helly68

    Helly68 Registered User

    Mar 12, 2018
    352
    I think you know that a care home is probably the only option now. I agree with those above who suggest telling her it is to regain her strength.
    My Mum settled well into a care home and when she occasionally wanted to "go home" it was usually a sign that she wanted reassurance. She spoke of her childhood home and not of the home she had come from. For a while my Mum said she was there until she got better, but after a while she stopped saying that.
    The initial period of adjustment can be difficult, but it gets better.
     
  13. Jale

    Jale Registered User

    Jul 9, 2018
    224
    Female
    Mum has been in her nursing home for nearly 12 months now - she went straight from hospital into the home for the assessment and we were fortunate that a place for her came up.

    We never told mum she was going into a home (that and going into hospital were always her biggest fears) - most of the time she thinks she is in hospital (we call the carers nurses) and she has accepted that, although last week she did think she was in jail!! If mum ever does ask about going home then I will lie to her by saying she is in a special hospital.

    Mum has forgotten where she lived - somebody asked her where she used to live and she answered London - she was actually born in London, but came up here when she was 7.

    I too feel that I have let Mum down and I still have days that I feel guilty just walking away after visiting, but my head knows that she is in the best place - she is well cared for and safe.

    Sending hugs
     
  14. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    Went to see mum. It went as badly as I’d thought it would. I only managed to last 40 minutes- I can’t sit there and take all this stuff without being able to argue back.

    The nurse was lovely- at one point she said to mum “your daughter’s come to see you and all you’re doing is crying at her”, to which mum replied “yes, but she’s not doing what I want!”

    Have had a very big cry, but I know that even if I thought home was the best place for her it’s not very n my power
     
  15. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    Sorry that should have said “not within my power “
     
  16. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    852
    To be frank, you did well to last that long. When my mother-in-law was in the care home, my husband and I used to last no longer than 30 minutes. We always timed it just before a meal and then my mother-in-law had no idea of time, often accusing us of not visiting for a year. There was always numerous accusations, anything from being kept prisoner, to us renting out her property ,to not caring about her etc. We just ignored it, difficult I know. Stay strong
     
  17. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    Thank you so much for your reply - it’s good to know I’m not the only one! I’m definitely reaching the end of my tolerance though. I’m not helping at all, and I have a lot of other people that need me more
     
  18. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    The nightmare continues! We’ve now had 3 care homes assess mum but none think they can meet her needs because of her mental state (constantly crying etc). There is a dementia nursing home which would take her but the social worker doesn’t think her needs are bad enough to make it worth putting her in a nursing home (and it costs more than twice what the care homes do). I just feel completely stuck
     
  19. canary

    canary Registered User

    Feb 25, 2014
    9,653
    Female
    South coast
    Keep on at the Social Worker - be that squeaky wheel that has to be oiled!

    If they cant find a care home that will accept her then they will have to increase their budget and look to nursing homes.
     
  20. Kelly84

    Kelly84 New member

    Jun 1, 2019
    9
    Yes, I’m quite persistent luckily! Unfortunately it’s mum’s budget that they’d be stretching, but she can’t stay in hospital forever
     

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