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Getting the family together to decide mum's care needs

Discussion in 'I care for a person with dementia' started by AnneED, Nov 5, 2015.

  1. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    I just wanted to ask for people's experiences of children meeting up to decide how to meet a parent with dementia's care needs when things deteriorate. I am, I suppose, the main carer for my mother (and have finance POA) and am starting to think that she may be better cared for now in residential care than continuing to live at home alone. She has had respite stays which have gone well. I have suggested to my siblings that we meet and discuss the issues (without mum present as she is no longer capable of making that sort of decision).

    I can see that the three of us may have differing views and I would like us all to make our points without it developing into a slanging match, and hopefully we can reach some decision that we can all support to some extent.

    Issues that I see arising are money (she has some but it will run low quite quickly if residential care costs are paid); her house (this has been in trust to the three of us for many years but I am wondering if we should try and rent it out to help stretch out care payments); the small sum of money that she gifts to each of us each month (this has been in place since our father died many years ago) and the money that she continues to give us for birthdays etc - I have continued this in the way it has been for many years but I guess it will stop if she goes into care, and whether she really needs residential care given some of the above factors.

    I was wondering whether a 'go between' or chairperson might be an idea but am a bit at a loss about how to find someone objective!

    Your experiences please!
     
  2. betsie

    betsie Registered User

    Jun 11, 2012
    253
    if you are your mums main carer then you are in the best place to know if she needs full time care for her safety and wellbeing.
    If you siblings object, ask them what extra they are going to commit to doing 7 days a week, 365 days a year to ensure she is safe.

    Re renting out the house, if you find her a carehome you are happy with the local authority will fund around £550 a week ( once her savings get to £14950) then you can use any income from renting her house to pay the top up fees for her care ( this can not come out of her remaining £14950 savings). The local authority will also take any pensions she has and stop attendance allowance, I think she will get to keep about £15 a week to pay for clothes etc.
     
  3. learningcurve

    learningcurve Registered User

    Oct 9, 2015
    22
    Hampshire
    I agree with betsie that the main carer is the one who is best placed to know what is best for her. The main factor should be her safety and happiness.

    The deciding factor for me was even though I tried to watch her 24 hours a day, which is impossible, I was on edge all the time and I tried my best to keep her safe but she still fell many times.

    Has she had a needs assessment? If not that may be the way to go and may help to make the decision.

    Good luck x
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Under the 2014 Care Act which came into force earlier this year you may be advised to check the trust will withstand the new regulations:

    the Care Act 2014June
    Annex E: Deprivation of assets
    Section 9. A person can deprive themselves of capital in many ways, but common approaches may be:...
    (d) Assets have been put in to a trust that cannot be revoked;

    Given the current tough financial environment and armed with the new law some councils have employed "avoidance officers" to look into use of a trust to avoid care home fees, stories have started to appear on this but I've not seen anything on here yet, still early days.
    K
    https://www.gov.uk/government/uploa...chment_data/file/315993/Care-Act-Guidance.pdf
     
  5. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Thanks for the advice. It's always good to exchange views here as so many people have been through similar things and have useful advice and comforting comments.

    I will have to get out the trust documents for the house and maybe contact an advisor - they were drawn up about 20 years ago by a solicitor and mum always said that it was because of care fees (though she never expected to go into care of course, as one doesn't!) but I assume there was some legal advice that suggested it was worth doing.

    I think that at the end of the day money will be a major feature in the family debate, and if this can be solved/or is laid down in stone by the government(!) the move to care will probably be agreed. There will be a bit of guilt too of course. Where mum goes is another factor as we all live some way away, but the suitability of the care home and her comfort in it have to be the most important thing. If I get some advice that will probably help the first, and finding out more about the limited options for care near her may provide an answer to the third. Let's hope so!
     
  6. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Family meetings

    Dear Anne,

    I wanted to tell you about my experience as I'm in a similar situation to you being the main carer, but to my in-laws, both with dementia and other ailments. They have 4 children, my hubby being the eldest. The siblings have regular (about monthly) meetings at our house. I (sort of) co-chair the meetings with hubby, but really my role is to give information - I try not to offer opinions unless asked, or to influence decisions. I just feel it's not my place to be part of major decisions (minor ones to do with day to day care they are happy to let me get on with).

    What I find useful is to set out any concerns in writing, ahead of the meeting. I have created an issues log which I update regularly, and send out to the siblings. This also serves as a sort of agenda for the meetings. I find it gets over the shoutiness of one BIL in particular, who cannot stand being contradicted! It gives the siblings a chance to think about the issues ahead of time. It also frees me up from the feeling of responsibility if I didn't tell them about something which could be important further down the line. One example, I have suggested that they get certified copies of the power of attorney document made up, ready to send to organisations, to pre-empt difficulties if they refuse to deal with anyone but the owner/policyholder direct....neither MIL nor DIL can deal with 'authority' any more! My shouty BIL who thinks he knows everything about everything thinks it's not a big deal. Well, fine. I say. I've raised the issue, let him decide what to do!

    And boy, do they have disagreements...yes, mostly about the money! One SIL has recently written a letter to express her views about applying for Local Authority funding, basically justifying reasons why she thinks it's OK to try to 'hide' some assets. :eek: Thankfully, my hubby is having none of it. But at least she put her ideas in writing, ahead of the meeting, and has left it for them to think about. My husband has responded and, likewise, has given them the chance to think about his (very different) views. So I'd say it's a good idea to encourage your siblings to express their views in writing ahead of the meeting.

    As for finding someone objective to chair the meetings, that's a tough one. I think it's impossible to have someone 'neutral' who knows enough of the details. I try to be objective, but even as an in-law I find it really, really difficult. Is there one of you who is naturally the 'peacemaker' in the family? If not, could you agree to take turns in chairing the meetings? Perhaps the other thing you could do is agree some ground rules. For example, setting time limits for discussing certain topics, so as not to get bogged down and lose sight of other important issues. Also, don't try to solve every issue at once. Some things might be quite straightforward to agree on, such the ongoing value of birthday gifts or whether to stop/ continue with these. Some issues won't be solvable until you've got more information or advice. By talking things through, it will help you all identify what more you need to do/ ask/ find out. And do try to share out the workload. Some things can be done remotely, e.g. researching a funeral plan.

    I would say, do try to have regular meetings. Yes you will almost certainly have differences, but better to give yourselves time and space to air them than allow resentment to set in and fester.

    Good luck, I hope your meetings go well!
     

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