How can i arrange respite care if Mum doesn't want it?

Discussion in 'Middle - later stages of dementia' started by andyb1, Jan 18, 2016.

  1. andyb1

    andyb1 Registered User

    Nov 16, 2015
    Mum has vascular dementia and Alzheimers. Dad is her carer. Mum has been deteriorating a lot in last six months and experiencing sundowning and sporadic loss of awareness of time and place. Mornings are definitely better than afternoons and evenings. Dad is doing an amazing job caring for her, but he is at the stage now where he is not able to cope with Mum's difficult behaviour day after day. We currently have a private carer who comes in twice a week to give Dad a bit of time out. The medical professionals (who tend to see Mum in the mornings or early afternoon!) say that Mum is still able to make decisions for herself, meaning that she can say no to additional care, or to a period of respite care etc. This is absolutely not the case though for long periods every day, when it can take us hours to calm her down and keep her safe. We have had crises where Mum has come to stay with me (son) for a few days to give a longer break. We are doing that again now after a meltdown yesterday. We live 2 hours away, so not easy to pop round and help.

    My query is, is there anything we can do to put respite care in place for Mum, if the medical professionals judge that she still has mental capacity to make decisions? I understand we cannot place Mum in a nursing home against her will. Has anyone got experience of this sort of situation? What has worked for you? I know in an absolute emergency there is sectioning if that is the only way of keeping Mum safe, but there must be something else too? Need to find some solutions, to give Dad more breaks.

    Thank you
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi andyb1
    You are trying so hard to get a break for your father, and it just doesn't feel right to me that it's being made so hard to get respite

    I appreciate that you feel restricted by those who say your mum has capacity. I do wonder, though, whether you would feel OK with being a bit devious with your mum - ie tell her a few "love lies" to get her to go into respite. Suggest a holiday in a pleasant hotel; tell her that the doctor thinks she needs a rest cure; say you are going out to lunch and then say she can stay overnight, how lovely; take her for coffee and cake and leave her ... So you do this after arranging respite and saying to professionals that she will agree (just don't tell them what she will agree to)
    It seems underhand - but needs must and you are acting in the best interests of you mum AND your dad

    Another approach might be to keep a detailed record of the more challenging parts of the day to show the difference between the behaviour when your mum is at a good time and/or in hostess mode - and stress the effect that dealing with this day in day out is having on your father - terms such as 'vulnerable adults' 'at risk' and 'duty of care' may help
    Would you be able to video her during a challenging time to prove to Adult Services just how much she and your dad need a respite break.

    If your mum is self funding, and your dad is fully in agreement, maybe just go ahead and organise respite yourselves - not always easy to book but surely worth a try - YOUR family knows exactly what the situation is, so you can proceed with clear consciences

    By the way - do you have POAs in place for your mum? If not definitely do those NOW - if she is considered to have capacity, make this work for you.

    You write that there was a meltdown yesterday - have you contacted Adult Services and your GP with details about that? If not, do so - the more you pester (and you have every right to!), the more they will have to take notice

    best wishes to you all
  3. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    I agree with shedrech,your Dad can't be expected to cope alone.If your mum 'has capacity'she must therefore be responsible for the consequences of her choices.How would she react if she was given a choice between more help/respite for your dad or full time care?Not an empty threat,your dad will buckle under the strain eventually.
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Personally I would tell her whatever 'love lies' or big fat whoppers, come to that, will do the job, and be firm. Some people have said it's on the GP's orders - if you could rope in your Dad's GP for reinforcements, that would be good. I would certainly ask him/her, having explaimed how desperately your dad needs a break.

    Sometimes it takes someone from outside to spell out things that won't be accepted from

    Respite is primarily for the carer, and to be honest the vast majority of people, if asked, would probably say they don't want to go. Dementia so often means that the person can no longer consider anyone's needs or wishes but their own, so it may be time to get a little bit tough.
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    I would just like to add that the social worker told me that if my mum said she didn't want to go at the time and knew what she was saying 'no' to at that moment in time then there was no way of forcing her and that care homes would refuse her on that basis on the day ! Just repeating what I have been told
  6. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    I agree with what fizzie says with this proviso:no one can force your mum into respite I she has capacity but no one can force your dad to kill himself either.If your mum has capacity maybe time for some tough love.As previous poster said very few people 'want'to go,but then your dad doesn't 'want'to be run into the ground either.What I'm really saying I that your dad is just as important as your mum,I think we sometimes lose sight of that,I certainly did when my mum was caring for my dad.My mother died in September,she was 12 years younger than Dad and we always assumed she would outlive him.
  7. Beate

    Beate Registered User

    May 21, 2014
    There is a whole lot of difference between not wanting to do something and actually understanding the consequences of that decision. Our SW was the same: he sat OH down and asked him whether he would want to go into respite. OH said yes so the SW was satisfied. The fact of the matter is though that OH probably didn't understand the question and said yes as he always does. So we were lucky. Had he said no, we would have had to have a best interest decision. It's ludicrous.
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    I have to say I think we were a bit unlucky with the SW too - my Ma was a very tough lady, we were never offered a BIA because they said I would just have to leave her 'to get on with it and go away' but I never would do that so we just didn't go away for 5 years - she ruled the roost and although I could get around some things using white lies and I can be quite devious I never ever managed to get that one past her lol. I'm sure there is a warning tale somewhere in that - perhaps to get a SW who is a bit more understanding lol
  9. andyb1

    andyb1 Registered User

    Nov 16, 2015
    thank you all

    Thank you all so much for your posts. Good to hear your views on this, and the suggestions for how we can go about getting the respite in place. We have a POA for mum, but its only for financial matters. Will talk within the family about the best approach to take. Love lies aren't a problem - we're getting worryingly good at those as its only way to get things calmed down sometimes. Good to know others have found a way through. Will let you know how we get on.
    Thanks once again
  10. paulineprice

    paulineprice Registered User

    Jun 23, 2015
    My friend does have a P.O A over her welfare, is 91 years old and has no family here. We took her for an assessment for a Bupa Care Home. She was to be self funding.
    She was asked a few health questions, said she did not want to come in permantly but the P O A had told the Assessor that he wanted her in for 2 weeks respite because she is always crying, does not realise what she is doing. so for her own safety and some quality of life he hoped to keep her there. She threatens suicide, is lonely because she forgets who phoned or visited, thinks that she has everything missing. After the assessment the P O a was told that they would not accept her for repite because she can make her own decision and he cannot persuade her.
    We made some recordings of her telephone messages left for me. another of her constantly crying and wanting to die, was going to throw herself down the landing stairs, or out of the window, was afraid etc. no one cares, see or hears no one.
    I also took papers of her being diagnosed with Mixed Alzheimers over three years ago as well as other info.
    At the first assessment she answered that she did not wear pads had no carers and was not on any medication. I took proof of all the med. pads deliveries etc. & 4 carers a day.
    This time when assessing her they acted differently , previously not listening to why she needed respite they questioned her as they should have already done.
    After she agreed to two weeks respite, (That was third visit to look at Care Home) she told them that she had not seen them before. the Manager took her for a walk around while I played two small recordings to the assessor, Her face was a picture, it sure told a story.
    These professional people are still not as experienced at getting into someones mind.
    It was heartbreaking for us to go through this but our friend needs 24 hr care. I have not been able to sleep for weeks now and it is affecting my health, I call her 4 times a day, she calls me when she is csared and I spend two very longs days a week helping her. I also have to make apts and send emails to her her friends. None of that bothers me except her crying and lonliness and being scared in her own home. She has no more than about 10 mins memory if that,
    I do not know how anyone remains sane who has to live in the same place. It is a cruel decease that impacts on everyone concerned.

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