Best interest meeting -'the decision has been made for you'

Discussion in 'Middle - later stages of dementia' started by Gg2, Aug 3, 2014.

  1. Gg2

    Gg2 Registered User

    Jul 19, 2014
    #1 Gg2, Aug 3, 2014
    Last edited: Aug 3, 2014
    I'm so upset and hope someone can offer advice. There are a few things I'm struggling with. I apologise for this being a little disjointed.

    Dad was diagnosed with moderate Alzheimer's a few weeks ago. Since Jan he has struggled with his mobility after a fall and has fallen about 7 times since then. He had carers in from May following a uti. I've been looking after him as in calling in, cooking, cleaning and helping with bills for the last few years. I was concerned about his memory and took him to the drs 18 months ago. I have a toddler so the carers at home 4x a day were a great help as since may he became doubly incontinent.

    In June a carer found him on the floor and he was admitted to hospital with a uti, chest infection and jaundice. After 2 weeks he was sent to an assessment centre and he's now in his 6th week.

    I've had 3 meetings. The first was with the OT who said he needed 24 hour care. She recommended a nursing home. I was upset and my hubby and I looked into moving in with dad and getting extra carers in. I was called to go for a funding meeting and they have granted dad nursing funding. After this meeting I made it clear to the OT and social worker that we really wanted to pursue dad's wish and care for him at home but they called a 'best interest meeting' and on Wed it was made very clear to us that 'the decision had been taken out of our hands'. I was devastated.

    My dad can't stand unaided and is doubly incontinent. Mentally he has good and bad days but recently seems to be quite good with his short term memory. He said last week 'don't leave me here. They'll take all the money. It's yours' I knew he meant that they will take the house (my inheritance). He's always been very concerned about this as he lost a lot of my grans when she went in to respite. The rest of the time she lived with us and dad cared for her. This makes me feel even more guilty as dad was her carer 6 weeks and she went in a care home for 2 weeks respite. Our circumstance are slightly different as I work part time and have a toddler but dad was made redundant and I was grown up but it all still feels unfair.

    I phoned around nursing homes on Thursday and there are only 3 out of the 14 in my area with beds available. I looked around 2 on Thursday and ruled one out straight away. The other seemed quite nice but I'm still terrified that dad will know what is happening and that I am putting him in a home. The physio and Matron said they would talk to dad on Monday and I'm terrified how he will react. I know he will be very hurt and I know he will worry about money. I think his pension will cover about 80% and the rest will have to come from his savings before they take the house.

    What happens to a house if you own it and can almost cover the cost? Do they hang on to it in case it is needed for payment?

    Is nursing funding an indication that I couldn't care for him at home?

    Should I insist on taking him home and trying? Deep down I think this will be impossible.

    My other concern is when to move him. We are going away for 5 days on the 18th Aug and I don't want dad to think I've given up on him. I am looking at the 3rd home tomorrow but it is much more expensive. If I went for the home I looked around on Thursday and liked, there are a choice of 3 rooms. One was in the 'hub' of it all but had an awkward layout. Another was a nice layout but at the end of a corridor and the last room was in a quieter section but had a view of the car park, had a good layout and was straight outside the lift. I don't know which to choose. I'd like dad to choose but know he won't like any as he wants to go home! (Although he hasn't really talked about home but he knows he doesn't belong there). I'm worried if I don't decide soon, he'll have less choice. Or should I leave him in the assessment centre until I get back off holiday even though I know the matron will want to move things quickly.

    Should I move him early to get settled in over a week before I go away?

    I've just got to the assessment centre and a few of the carers are surprised that he is being made to go in a nursing home. They said 'there are worse people in the community' and feel I should take him home. Truthfully I think it would be easier for me if he went in a home but I would like it to be his decision.

    Again I apologise that this is all very disjointed and rambled. I'm so confused and upset.

    Thanks for taking the time to read this.
  2. Jessbow

    Jessbow Registered User

    Deep down I think this will be impossible.

    Your words.....
    Yes its hard but you know what is best for the man your Dad has become.

    I hated doing it to my Mum, she went into care ''until you get a bit better, rather than staying in hospital, its sooo much nicer there''

    At least do it for while you are away, see how he settles.
  3. Grandma Joan

    Grandma Joan Registered User

    Mar 29, 2013
    1. Have you got Health & Welfare POA for your Dad - in which case you have the power to act in your Dad's best interests

    2. If it has been agreed that your Dad's primary need for care is for health reasons then he should be totally funded by Continuing Health Care. Has this been mentioned to you? This is where the NHS assesses your Dad's needs ( kind of sounds like this has been done). You can have this care in a Nursing Home or within your own home.

    What does NHS Continuing Care cover?
    It covers 100% of care fees for people who need full-time care primarily for health reasons. It’s available whether you’re in a care home, in your own home, in a hospice or somewhere else.

    This website is extremely helpful

    If you’re in a care home, NHS Continuing Healthcare covers all care fees, including the costs of accommodation.
    If you’re receiving full time care at home, Continuing Healthcare covers all nursing care plus personal care (bathing, dressing, etc.) plus any household costs directly related to care needs.
    It doesn’t matter whether you’re in a residential home or a nursing home, the same rules apply: It’s about your health needs first, not where you live or how much money you have.

    When you first need full-time care, you should have a health needs assessment for Continuing Care, carried out by the NHS. However, many people find that they are assessed first by the local authority, to test their financial means.
  4. bandep54

    bandep54 Registered User

    Feb 13, 2013
    Best Interest (For who!!!)

    How to start??? Here goes.....
    6 weeks ago one of my sisters, my step-dad and I were called to a Continuing Healthcare Meeting because Mum has had 5 hospital stays in the last few months. We were told that she met the CHC criteria and she had to leave the Residential home she has been in for the last 18 months + (which she was very settled in) and move into a Nursing Home! We had thought this might be the case one day and had enquired about a new place that was being built and due to open in August. We mentioned this at the meeting but they said as it didn't have an opening date, and we couldn't leave her in hospital, or let her go back to her residential home, we would have to find somewhere else.

    Later that day Social services told her home she wouldn't be back; so her room was reallocated to someone on their waiting list and we had to trawl around Nursing Homes to find her a place. There is a real lack of places in our area so this was very difficult. In the end there was only ONE home with a room available. I wasn't very happy for her to be there but the Soc Worker convinced me it was better than hospital (which I suppose it is) and said that if we didn't like it we could move her. Well lots of things have happened there that we don't like; some to do with her care and some to do with the lack of stimulation.

    So the new home opened and we loved it and felt it would be perfect for Mum. I contacted Social Services to tell them I wanted to move her and they called a BEST INTEREST MEETING. On the morning of the meeting Mum was interviewed by a Social Worker and others who had never seen her before and as she was surrounded by people chatting to her she was in a really good mood; laughing with them (The first time I'd seen her so animated for ages). At the end of the meeting the CHC & Soc Services said it would not be in her BEST INTEREST to be moved and put an Action Plan in place for the home to meet her needs (Mostly basic care which she should have been having anyway!!!!) Another meeting has been set up for 2 weeks time but it looks like we will not be able to move her even though we feel, as her family who love her and know her well, that she would be happier in the new place.

    We do not have a Health POA in place as her Dementia came on very very quickly.

    Has anyone ever been able to overturn this type of decision as my family and I are devastated and don't know where to turn :(

    BLONDY Registered User

    Oct 29, 2011
    2000 MILES AWAY
    Hello first things first before you consider any home go to the Care Quality Commission web site and look at all the homes your are interested in. Some can appear to be like 5* hotels but actually you would not willingly put an animal in them if you knew the truth. As for paying for care as your father requires full time nursing care this should be funded by the local services, beware people lie when it comes for whether or not you are expected to pay for care. It is also the local authoritys position to place your father in a home. By saying you have to look for a home they are negating on their financial obligations, another good thing is do not sign any contracts with the home local services enter into the contract not you. There are many people who have been in this situation and had they know the truth and the laws they would all be a darn site better off. Please do not feel guilty about your father going into a home this is one of the kindest things you can do for him as no one person can give the 24 hours care that is required.
    Kind Regards
  6. saucepan

    saucepan Registered User

    Jul 30, 2014
    I thought you might like to know that a new ruling is coming in in 2016 that once £72,000 has been spent on care from your dads private funds, then care costs will be reduced to £12,000 a year, which might possibly be covered by your Dads pension and hopefully leave something for your inheritance which will make your Dad very happy.

    I recently had meeting with an excellent financial advisor who told me this, but at the time of meeting my Dad had just had a fall and been taken to hospital with pneumonia I was a little bit distracted so may not have facts and figures 100% so you would need to double check. Of course 2016 seems like a long time to wait.

    Best wishes.
  7. Rettaere

    Rettaere Registered User

    Sep 30, 2014
    #7 Rettaere, Oct 1, 2014
    Last edited: Oct 1, 2014
    It's so unfair

    It is so unfair that other people who don't know person can decide their life for them.I am going through same situation,My poor aunt is in a care home 12 miles from me,no friends and I can only get there twice a week to see her as it's 2 hours bus journey there and 2 hours back.I found lovely new home 3 miles away and been told wouldn't be in her best interests to move her.dont know what to do as they seem to control her life.

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