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At what point do you decide for a care home?

Discussion in 'Younger people with dementia and their carers' started by sford91, Feb 10, 2017.

  1. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Mum has deteriorated over recent weeks she has early onset frontal lobe dementia. I am currently travelling and due to return to England in 5 weeks. My younger sister has been supporting my mum and she has a wide variety of carers. However two weeks ago mum walked to town by herself and was found by members of the public confused they called the police who then contacted my sister. Because of mums dementia she's pretty much lost the ability to speak so finds it hard to communicate. Anyway today my sister received a phone call from the carers saying a member of the public had found her outside her house with nothing on her lower half. Me and my sister don't know what else to do there is literally us no other family. My sister has rang social services as we speak but not sure if we have any other options she's only 58. As you can imagine its heart breaking for us all. At what point do we decide she needs somewhere and who makes that decision?
     
  2. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    4,391
    Yorkshire
    oh sford91, how incredibly sad and worrying for all of you
    if you have POAs in place and your mum will be self-funding, personally, I'd be looking for a (dementia/EMI) care home now and organise a move asap
    if your mum's care is funded by the LA, then they have to be convinced that she is unsafe and at risk (usually having tried the 4x a day carers) - if this is her situation, make sure SS have in writing (email) what has been happening, especially the latest incident, her almost inability to communicate, and also that the police have been involved - tell them you consider your mum is a very vulnerable adult, that she is at risk and that the LA have a duty of care; make it clear that you and your sister both believe that the risks to your mum are now so high that their duty means that your mum needs to be in a place of safety, supervised 24hours a day ie her care needs can now only be met by her being in full time care
    having said that, do get your mum's GP involved too, hopefully to make an urgent referral, and ask your mum's GP to check for a UTI as well
    hope you get the support you need quickly
    best wishes
     
  3. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    707
    Maidstone.Kent
    This must be so worrying for you and your sister but in all honesty it sounds as though you have reached that point now to keep her safe and looked after. Dad is self funding so when we reached that time and made a best interest decision we had time to find a dementia care home suitable for him and his needs, importantly one that could handle his moderate stage. So if your mum would be self funding I would say start looking at somehow. If she wouldn't be then Shredrech has outlined good advice on the LA/ SS route.
     
  4. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Thankyou for your replies. Im in bits to be honest at the ages of 23 and 25 we should not have to mske these decisions. My sister looked at a care home a few months ago which was really good and nice and had been recommended shes contacted and they are coming to see her tomorrow. Its so difficult because she understands alot and know s what your saying to her but then other times shes like she was earlier. Shes been really difficult in asda for the carers to today and thsts not mum at all. I wonder if she has urine infection obv course it has ro happen on a Friday typical. I just don't know how we wil explain it to my mum that shes going to a home. Or why the mans assessing her tomorrow. now i imagine just respite but i know the inevitable. We have POA thankfully and me emma know deep down the right thing but actually making the decision is something else.
     
  5. SnowWhite

    SnowWhite Registered User

    Nov 18, 2016
    380
    I feel really sorry for you. Xx

    What about booking her in for a weeks respite to a nice home and see how that goes. I did that with my Mum just before Xmas as she was worn out, anxious and having loads of falls.

    My case is complicated in that my brother locked us all out of her house so we couldn't even get her back in! We have had major family upsets over this but that's by the by as far as you're concerned so I'll just say that she is now settled there and is looked after beautifully and is very happy most of the time ... just an odd day she gets a bit homesick but the staff are great and all chivvy her along.

    Please let us know how you get on.
     
  6. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Mum was assessed by the care home today and my sister said it was the hardest thing shes ever had to do and mum keeps crying saying she doesn't want to go etc. But shes just so vulnerable we know she needs to go. We've said its for respite but we know its long term. It just terrifies me that shes 58 and thst will be her home 'forever'. They're going on Monday for a look around and then Wednesday for lunch and my uncle will be there thankfully. I feel utterly useless and guilty being so far away but also for putting my mum in one.
     
  7. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    4,391
    Yorkshire
    hi sford91
    you and your sister are magnificent and your mum is indeed fortunate to have 2 such able and thoughtful daughters - she must have been quite a mother to have brought you up to turn out as you have
    you are doing everything you can to support each other and to get the support your mum needs, though sadly she just is no longer able to grasp what those needs are
    I will take issue with you on one thing - the two of you are not 'putting' your mum anywhere - you have done everything you can to have her stay in her own home and now that just isn't safe enough for her, you have sensibly realised this and thoughtfully gone about seeking a new environment for her - you are organising for her to move into a new home where she will be safe and supported and well looked after - her 2 daughters will visit when they can and be able to be her loving daughters (not worried, stressed carers) - and the 2 of you will certainly be overseeing your mum's care, monitoring how she goes and standing up for her whenever she needs it
    useless; no - look at all you have done; least of all supporting your sister
    guilt we all feel, it's the price of caring - however, it's rarely rightly placed - set it to one side - you can only be in one place at a time - and I suspect your mum would tell you off if you just dropped your life - you'll be back here soon enough
    very best wishes to all of you
     
  8. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    707
    Maidstone.Kent
    I echo all that Shredrech has posted I am in my middle age oh ok 61! Hard enough for me and emotionally difficult to come to the realisation and heartbreaking decision to put dads best interests first a nd find the expertise in a dementia care home he needs and deserves so for you two sisters at your age and your mums young onset age, you two are marvellous caring daughters in making this decision for your dear mum. If the care and monitoring falls to your sister because of distance this is quite common in families don't feel guilty can't be helped but from my experience with a proactive distance sister who became suddenly invisible and stopped communicating even though you can't do anything practically on a day to day basis to help, you will be supporting your sister fully by listening and giving your advice so it shares the mental load between you. At my age I knew mum who died suddenly 3 yrs ago and dad who we looked after for 10 mths in his home and didn't leave him alone once would have wanted us to get on with our lives and this is even more important for you two at your young ages with everything ahead of you.
     
  9. anita1780

    anita1780 Registered User

    Sep 13, 2015
    45
    #9 anita1780, Feb 12, 2017
    Last edited: Feb 12, 2017
    You are very mature for your age girls , I'm 36 and I find very difficult to cope with stuff.
    It's terrible what's happening to your mum at such a young age but probably a care home is the best choice as your mum is not safe , hope everything goes well.


    Sent from my iPhone using Talking Point
     
  10. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Thankyou for all your kind words. I've been looking into live in carers but they're so expensive. I know she will be fully looked after and cared for but the thought of actually having to go see her and then leave her there is what's killing me. I physically feel broken. How do you cope with that? I guess I just want Wednesday to hurry up. She's so happy in herself and she understands alot to and I think that's also what's harder because she knows she doesn't want to go.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    4,342
    South coast
    Yes, the move is very hard.

    When you go on Wednesday, dont try explaining why she has to go, trying to reason with her or persuading her - it wont work and will just get you all upset. Stick with the bare bones of whatever explanation she needs - its just to give you a rest/little holiday/the doctor has requested it etc.

    Try and get there in the morning when they are likely to have activities, or just before lunch as these will work as a distraction. It is also likely to be worse if she is tired. Staple a bright smile of your face (I know you wont feel like this underneath, but try not to let it show) and adapt a breezy "isnt this all very nice" attitude. Compliment and approve everything you see - what a lovely room, ooh look theres a nice garden, that looks fun, dinner smells good. She will pick up her cue from you and if she realises that you are unhappy about the move then she will be too. Do not cry in front of her, even if you feel like it inside - bottle them up till later.

    Dont stay long and dont do long goodbyes. Try and go when she has something else to distract her - tea and cake or a meal perhaps. Whatever, its probably best to enlist the help of a carer who can take her away for something "important" and you can just say a simple "Ill see you later", or, if instinct tells you that she will kick up a fuss say you need to go to the loo or talk to the manageress and then just slip away.

    Afterwards you can cry out of sight if necessary and I would also arrange something nice for yourself as you will be feeling very emotional and tired.

    Good luck for Wednesday xx
     
  12. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    707
    Maidstone.Kent
    I tried live in carers for dad but the expertise wasn't there and like your mum he was too vulnerable 1 to 1 by then. Dad was up and about at night so a second carer was needed so the live in carer could sleep which pushed the cost sky high so not logical just to keep him in his own home which I was desperate to do. However I can now see having people around him in the home whilst not what Dad would have wanted has been a positive thing even though I thought it wouldn't be. So as Canary has said with good practical advice be kind to yourself and I hope Wednesday goes as well as it can, many of us have walked your path into the tunnel but have emerged into the daylight the other side taking things gently day by day x
     
  13. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Thankyou for all your comments. It's my sister and uncle who's taking her on Wednesday as I'm currently in Vietnam but I've passed it all on. I'll let you know how it goes.
     
  14. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    What happens if mum refuses to go to a carehome?

    Mum went for a visit today and by all accounts it went horrifically. She's self funded doesn't want to go. But we know she needs to go. Who do we contact to help us?
     
  15. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    3,703
    Salford
    Are the home happy to take someone who doesn't want to be there and may become disruptive or upset the other residents? Also they'll need to have a Deprivation of Liberty Safeguarding Order to keep her there against her wishes and this will involve social services.
    K
     
  16. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Thanks Kevin. Mum won't be disruptive of other patients she's she so upset to be going cause she's still got enough insight to know and understand she doesn't want to be there but doesn't have enough capacity or understanding of what her risks are. Mum said to my sister and I before she got really unwell that she didn't want us to be carers to her she wanted us as daughters and I think for all its absolutely killing us all its for the best thing. Her safety is the most important thing in all of this and I think deep down mum agrees. She helped pack a couple of her bits yesterday so I guess that's a start.
     
  17. sford91

    sford91 Registered User

    Nov 4, 2015
    69
    Mum went to care home today. Lots of rssrs2from all parties but shes there and shes safe. Not entirely sure how to feel accept numb.
     
  18. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    707
    Maidstone.Kent
    Ok .... and breathe! I had to trick dad to get him to and leave him at his care home which felt and still does feel 2.5 years on horrible. But as you said to yourself your mum is safe and looked after and your gut instincts are that this is the right time. Hope the home have given your sister and uncle advice on how soon to visit to help her settle. For some, I visited Dad 2 days later but for others some homes suggest longer, expect it to be hard whichever way you all play it and probably in for a bumpy few months, expect the worse and hope for the best. For now you can all go to bed tonight knowing your mum is safe. Post on here for advice when you need to, chances are someone has been througha the same situation or problem. Best wishes
     
  19. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    3,703
    Salford
    My wife's been in care for just over a year now, 6 months in a secure unit and now in an EMI nursing home, during that time I've seen a lot of people come and some go too sadly and every new resident brings new visitors.
    I see the visitors looking like a child at their first day in school, teary, afraid, surrounded by strangers who all know what's going on. For many people it's the first time they've ever visited a care home and they have no idea what to expect.
    Most of the time the new resident is calmer than the visitor, just give it some time and try to fit in, learn everyone's name, staff and residents, walk round and talk to people don't be afraid of the place, enjoy it.
    K
     
  20. canary

    canary Registered User

    Feb 25, 2014
    4,342
    South coast
    I echo all that Kevin says.
    Mum has been in a care home for coming up 3 years now and its like being part of an extended family. You get to know the carers, the other residents and their family too.
    To start with, though, I was a bit scared too and didnt really know what to expect.
    It takes time for everyone to adjust - resident and relative alike.
     

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