24/7 home care vs care home.

Discussion in 'I care for a person with dementia' started by Champers, Jun 16, 2019.

  1. Champers

    Champers Registered User

    Jan 3, 2019
    74
    As well as my own mother with early stage Alzheimer’s, my 90 year old MIL is rapidly deteriorating with acute memory issues. She was hospitalised with a burst diverticulum in April and it was decided by the medics that she was too high a risk to operate on - diabetes, spinal stenosis, severe arthritis so very limited mobility. Until this episode, she had been living independently but with a casual arrangement with a friend who would do housework and help her shower.

    Her memory hasn’t been brilliant for a while but since she has been discharged, she can’t recall a conversation from 5 minutes ago and has told us quite a few things that she has definitely imagined. She has no idea what day it is and repeats conversations endlessly. We have arranged 24 home care through an agency and already one carer has given up and the second looks like she’s going the same way. Both girls were absolutely lovely but she wouldn't let either them out of her sight, keeps them up all night with her demands to be moved from her bed to the living room, then ten minutes later she wants to go back to bed. If they try and persuade her to stay put, she cries and screams like a child. The current carer is on her knees with exhaustion. We’ve had to fund an additional carer to sit with MIL whilst her own one takes her two hour rest otherwise she’s calling her for the toilet or for company. She has no recall of any of these issues the next morning,

    We both feel that live-in care isn’t really working. As well as the physical issues, MIL just sits there. The TV is on but it’s just background noise. She doesn’t read. The lovely carer has tried to play simple board games with her in an attempt to stimulate her and whenever she has suggested taking her out in her wheelchair, MIL just makes an excuse. She falls asleep during conversations too. No wonder she isn’t sleeping at night as she’s not really doing much doing the day. My husband and I are beginning to feel that at least in a care home there would be activities, other people, comings and goings, trips etc. We’ve had a look around one that was recommended and it was really homely with an excellent QCC report but whenever we talk about just having a taster day, MIL shouts that she’s NOT going into a home and we can’t make her, although she regularly tells us she wants to die and wishes she could just be put down. To compound everything, she complained to the care agency manager, when she was visiting, that we were pressurising her and now a report has been filed about us. All we want is to find the best solution for her, we have no ulterior motive but she’s making us feel like villains.
     
  2. LHS

    LHS Registered User

    Oct 5, 2018
    59
    I am asking the same question re home care or a care home right now for my um but my mum is far more able still than what you describe. Sounds like your circumstances are pointing to care home however distressing it is.
     
  3. Graybiker

    Graybiker Registered User

    Oct 3, 2017
    138
    Female
    County Durham
    It’s an awful situation isn’t it. I can only tell you my experience, which is a bit different as mam was at home with dad, no carers as dad cancelled them.
    Mam has now been in a care home for 18 months and she looks better than she has for a long time. The routine, the release of responsibility and the company have all been beneficial, as well as the obvious benefits of 24 hour care.
    Luckily she is in an excellent home where the staff are absolutely brilliant,the most important thing, in my opinion. Daily activities keep her occupied and stop her from napping which means she sleeps better at night. She gets her hair done every week, regular podiatry visits, new glasses every 12 months.
    For us and mam, it was the best thing we could have done. She is generally happy, she’s well cared for and our visits are now joyful.
    Again, just my experience. I wish you well whatever you decide x
     
  4. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    I honestly wouldnt try discussing it with her. If you wait for someone with dementia to agree to a care home you will wait for ever. Their default answer is almost always "no".

    I would be inclined to just make arrangements and organise it. Tell her on the day that the doctor wants her to convalesce to make her stronger - or any other story that might pacify her. Dont tell her in advance as it will give her more time to dig her heels in.
     
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,337
    Female
    I agree she would probably be better in a care home, because she will have constant company so may well feel more secure (although if she continued insisting on having someone by her side at night they wouldn't be able to deal with that). I would normally advise doing as Canary says, just going ahead and not discussing it - you will never get a 'yes'.

    But I am unsure of the significance of 'a report has been filed about us pressurising her' - is that just within the agency? Or have SS been alerted? If so, if you proceed against her wishes presumably SS will intervene. Has she had a capacity assessment?
     
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,680
    Nottinghamshire
    From what you've said I can't see how any option other than a carehome could possibly work for your MIL. I was pleasantly surprised at how well my dad did when he eventually went to a carehome - and at how relieved I was when I didn't have to deal with his daily crisis!!

    I hope SS can see beyond her wants and deal with her needs before the inevitable crisis arrives. I wonder how MIL would feel if she didn't have 24hr support. She obviously needs a team to look after her. If you tell any new potential carers and SS what the real situation is I imagine things will quickly come to a head.

    I agree with canary - try subterfuge to get her somewhere safe. I've read of people presenting a home as a hotel, or even as going "out to lunch" and leaving the caree there. I expect the staff at the carehomes will have their own ideas too.
    Best of luck!
     
  7. Champers

    Champers Registered User

    Jan 3, 2019
    74
    Thank you very much for all your replies. They have been so useful and makes us feel less of the ‘bad guys’ because we had suggested a care home. It’s not been helped by a couple of her well meaning neighbours visiting and telling her she doesn’t have to do anything she doesn’t want, without them understanding her complex needs and seeing the whole picture.

    The carer told us that a report had been written by the care agency manager because MIL had told her that we had ‘threatened’ to put her in a care home - not true. We tried to discuss it with her to keep her in the loop and for her to be involved in such an important decision. I gather she also told the practise nurse who was visiting to dress her leg, the mobile podiatrist and the hairdresser the same. I guess because she hasn’t had a formal diagnosis of dementia, it’s assumed that she is of sound mind and free to make her own decisions.

    Yesterday afternoon she ended up back in hospital. She was very breathless and in pain so, following a call to 111, a doctor came out and arranged for her to be readmitted. She has told everyone who has spoken to her, including us, that the reason she is back in hospital is as a result of her having a fall and “smashing her head” That’s definitely not true, so further evidence that she is very confused.

    We have insisted that we speak to the discharge team before they release her next time as this might be the ideal opportunity for her to go into a home to ‘convalesce’ Understandably, the NHS really don’t want her occupying a bed for longer than necessary and are already talking about sending her home at the first opportunity. MIL clearly isn’t grasping that the home care isn’t working - she’s already become almost obsessively attached to her carer whom she thinks is there to wait on her 24 hours a day and doesn’t seem to grasp that she is only temporary and has already told us she is leaving at the end of June. This particular woman is adorable and treats MIL like her own granny but because she is so kind and biddable, MIL has told the ward staff that everything is absolute fine at home as *****, the carer, is her friend and will be living and looking after her forever.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,642
    Female
    South coast
    Insist on seeing the hospital Social Worker and make sure that they understand the true position.
    Dig your heels in and refuse to bring her back (it might be prudent to remove her house keys) until proper care is sorted.
     
  9. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,680
    Nottinghamshire
    I had to do this for my dad last summer. Hospital weren't pleased so as canary says - be prepared to dig your heels in!!
     
  10. 50AMPfused

    50AMPfused Registered User

    May 10, 2013
    4
    West Yorks
    Once I had a long convo with the doctor on the geriatric ward and she soon realised we were suffering carer fatigue, and she arranged 2 weeks in the community rehab hospital for mum. A chance for assessment and proper discussion with Health Care profs (doc, occupational therapists etc) and Soc Services. Even if they won't authorise it, you can. We did that for FIL once when SS said he was fit to go home, MIL didn't want him home so we put him respite while things were sorted and he was assessed - he ended up staying there permanently.
    Do you have power of attorney? MIL would have to have mental capacity to agree to that, if she doesn't then someone else has to decide what is in her best interests. Don't get too stressed, it will all get sorted eventually. Best wishes x
     
  11. Champers

    Champers Registered User

    Jan 3, 2019
    74
    Fingers crossed that we may have made some progress.

    Whilst visiting MIL today, we were told that she is medically fit and can leave hospital (can just about shuffle 5 steps whilst bent double over Zimmer frame and shrieks in pain when she sits down!)

    I managed to waylay the OT and explained the dilemma we were having and, thanks to all you lovely people who offered suggestions, I was able to say that her needs were so complex, she needed a team to care for for her and that we were as concerned about her mental welfare too. I’ve been methodically recording every single incident so could back everything with evidence and examples. It probably helped that she’s been quite disturbed on the ward at night too.

    The OT spoke very diplomatically to MIL and suggested very kindly that perhaps a little break in a nursing home for some respite care “whilst a few more things are sorted out at home” Hearing it from a staff member seemed to have a better result - assuming she hasn’t forgotten again tomorrow - and she agreed that it sounded like a good idea.

    The care home manager said she will pop in tomorrow and introduce herself to MIL too and that she will also tell that, at the moment, it is only a short term plan. We had a chat with her carer and told her that it might also not be a good idea for her to visit whilst she’s still in hospital as I’m convinced that once MIL sees her, it’ll all kick off again and she’ll insist that she goes home with her.

    Once again, thank you all so much. Your support and understanding has given us strength to do the right thing for MIL. Even the agency manager who was providing the 24/7 care told us she was a danger to herself and an accident waiting to happen.
     
  12. Graybiker

    Graybiker Registered User

    Oct 3, 2017
    138
    Female
    County Durham
    That’s great news, well done :)
    Hope it all works out well for you all
    X
     
  13. Champers

    Champers Registered User

    Jan 3, 2019
    74
    #13 Champers, Jun 20, 2019
    Last edited: Jun 20, 2019
    I cannot believe this - I am SO angry.

    We’ve just taken a call from the SW at the hospital. He says he’s talked to MIL and she told him doesn’t want to go into the care home, even though we had a conversation with her at 2:00pm today and she was very agreeable with it. Of course she’ll say she doesn’t want to if she’s asked!

    I went through all the issues we’ve had (keeping the carer awake etc) and he said that part of a carers job!

    We explained that we felt that she wasn’t able to weigh up and make a balanced decision and he said he disagreed - she seemed perfectly capable - despite her being unable to recall our earlier conversation. She told him there were people in her home to care for her - there isn’t! We cancelled the home care and explained that the carer had now left. MIL was even concerned enough to ask that she had returned her key before she left.

    We’ve got a meeting tomorrow morning and I’m beside myself with rage at the interference.
     
  14. Baker17

    Baker17 Registered User

    Mar 9, 2016
    233
    I not surprised you are angry, I’ve been through this scenario with SW’s and an advocate appointed for my husband and to say it’s maddening is an understatement. I can’t really offer you any advice because I’m still battling these inept and untrained people ( when I asked what if any specialist training they had in dealing with people with dementia I was told they dealt with all types of mental health), I hope you are successful and get the right care for your MIL, take care xx
     
  15. Champers

    Champers Registered User

    Jan 3, 2019
    74
    I’ve had a look at the NHS’s definition of mental capacity:

    The Functional Test.

    • The ability to understand the decision
    • The ability to retain information about the decision
    • The ability to use and assess information about the decision
    • The ability to communicate their decision
    If a person lacks capacity in any one of these areas then this represents a lack of capacity.



    MIL certainly cannot retain ANY information about decisions. She forgets a conversation or meeting a person within a few minutes and it’s debatable that she is able to use and assess information about a decision as she always asks us to answer for her.

    I see how a social worker spending 5 minutes talking to her can possibly make a total judgement on her mental cognition. We have a face to face meeting with him tomorrow and I’m tempted to say to him, “Please go back to her and have a chat about what you discussed yesterday. See if she really can recall what you talked about and even if she remembers your face.”

    We told her at 2:00pm this afternoon that the carer had returned to London, which she acknowledged and accepted. We all said, including her, that we would miss her and what a lovely girl she was.

    By 4:00pm, she was telling the SW that she wasn’t going in for respite care as there was a carer living in her house when she got home. I would say that is clear evidence of being unable to retain information.

    I’m incensed that a do gooder has interfered and upset the smooth transition and made a huge assumption about our intentions. We only want the best for MIL. We initially strongly supported the original plan for live in care but it has been a series of disasters and become more and more apparent that her level of need is far in excess than can be provided. The paramedics have been called out on several occasions, falls, struggling to breathe and pain relief as well as three hospital admissions followed by discharges before she is ready.

    Sorry to rant. x
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    @Champers your ranting is productive
    use exactly what you have written to create evidence to submit to the Social Worker
    what I mean is produce a list of those disasters, paramedic call outs, falls, health concerns, wakeful nights, hospital admissions, with examples of your mum forgetting conversations

    I know this is more work for you, but may be cathartic and will no doubt be a lengty list for the SW and others to chew on
     
  17. Champers

    Champers Registered User

    Jan 3, 2019
    74
    Thank you. I needed a cool hand of my fevered brow.

    I had a sudden thought that if the SW is intransigent that MIL has full capacity I will say, “You’re absolutely positive? There is no doubt in your mind?”
    And if he says he is, I will turn to MIL and say, “As you, luckily, have full capacity, do you consent to us making decisions on your behalf?”
    She will undoubtedly say yes so I will turn back to him and say,
    “We all agree that the care home IS the right place for her.”
     
  18. silversea2020

    silversea2020 Registered User

    May 12, 2019
    61
    Yes


    Hi Champers....... wishing you the best - I hope you will kept us updated - must be so very frustrating to say the least.
     
  19. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,987
    Female
    Chester
    I'm sorry to read on your other thread that MIL is to return home.

    I've been following and think you have done your best to fight for MILs best interests, I hope you can keep posting for the support DTP provides.
     
  20. silversea2020

    silversea2020 Registered User

    May 12, 2019
    61
    Hear Hear! Must be such an upsetting situation
     

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