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Polar Bares

November 12, 2014

It feels like a very strange time. I pick up the keys to the new flat on Friday. I’ve spent most of today sorting out the utilities, broadband, tv license etc. The furniture is being delivered next Wednesday and I’ve taken a week off work to get the flat straight. Emotionally, I’m swinging between excitement and a real deep sadness. The excitement is good – I’ve never lived on my own before and although it will only be a couple of nights each week, it feels like a big adventure.

The sadness is two things. It was my wife’s birthday on Monday and I’m constantly aware that none of this would be happening if it wasnt for her death. I don’t feel guilty about that. It’s more an existential ache. Steven and I marked her birthday with a music session of lots of her favourite soul songs from the 70s. That felt apt and nice. Then later, I went to the hotel where we’d shared significant times together. We spent our honeymoon night there and sat outside drinking and discussing our future life together. I did the same on Monday, except our honeymoon was in July and this is November. After half an hour my teeth were chattering and I couldnt feel my feet. And the future from 2014 felt very different to the future of 1981.

The other sadness is Steven’s future. Since getting the flat, I keep getting the same voice – “If I die tomorrow, I’ve done all I could possibly have done to secure his future”. From rescuing him from a potential life in a hospital in Wales, to the massive struggle to get a personal budget, the year long threat of homelessness, to building the great support team he has. And now the flat means that he will have his own home that he will own one day.

But I know it will probably not be enough. More than likely, within a week of my death, Steven will be institutionalised. The support staff will be dispensed with and the State will have started to sell the flat to fund his care.

I know I can be a melancholic old bastard but all those thoughts and feelings are there as I shop for pillowcases and towel racks.

Nothing is sad or happy. Everything is sad and happy.

From → Social Care

  1. Jayne knight permalink

    Discretionary trust is the only way to prevent that at this point. Families do that to prevent that and I know things can change but if you died tomorrow ( charming of me) that would secure it and I think there would be a national outcry if something happened to Stephen you didn’t want. Of course the future may change. H and SA have a book about trusts. That does work mark if you choose your trustees carefully.

  2. Emily permalink

    I think this is a constant concern in the mind of every parent who has a child that is different to the norm. I worrying incessantly about Max’s future.I don’t want to expect his sister to be his guardian and overseer once we are gone, but this may be the reality. Who do you trust at the end of the day because it all boils down to money.

    The great thing that you have done for Steven is bring him into the public eye. As Jayne stated previously we will all be watching out for him.

  3. Shirley Buckley permalink

    Mark Jayne is right. Get a good discretionary trust with trustees who know what they are doing and it should be covered. The flat belongs to the trust and they look after it for Steven. Just get a good trust lawyer

  4. Sally permalink

    All of the above on the trusts , but I do agree with you about the sadness which goes with the happiness. Its the utter, utter vulnerability of the person involved and the utter utter untrustworthiness of the system meant to care for them, now and forever doing its weasel best to get out of the little they are meant to do.
    Yesterday I saw a PA outside our GPs with a young woman who was in a wheel chair and had no ability to use her limbs purposefully or talk. I imagine she has cerebral palsy. The PA was-you guessed it-on her damn phone texting away.The young woman was thrashing about. Why? Well,her scarf was flapping in her face, and it had started to rain, so she also had rain in her face. One of her thrashes caught the elbow of her carer who roughly put her arm back-and kept on texting. Without looking at her, talking to her, or noticing she was uncomfortable.I shouted “Hey!” and got a sour look. I wanted to attack her. Sadness and fear for the future. Its the monkey on all parents’ backs if they have children who are disabled and vulnerable

    • Pauline Thomas permalink

      Sally how I agree with you. It is the uncertainty of knowing whether the people who will be caring for my son when I am no longer around will be his friend or his tormentor that is nightmarish.

      Two incidents just recently have left me feeling really depressed. I was sitting in a coffee shop in the High street when a group of people from one of our local residential shared homes came in with their carers. The person on the table next to me muttered to her friend ‘ Oh no! the looneys are coming in. I’m going’. That is the reality of ‘out in the community’ for a lot of people with LD Again when I met an old acquaintence from years ago, I asked after her family and grandchildren. She replied that they are finding it very hard to find work but are at the moment doing ‘caring’ Apparently that is all they can get, ‘but it will do until something better turns up’, I find that sad that some people only do ‘caring’ because they cannot find anything better. Saying all this I know several people with LD who have absolutely wonderful carers. It is just a shame that some carers have not really chosen caring, but have just taken it because it keeps them off the dole. Does not inspire much confidence in the care industry does it? . .

  5. Weary Mother permalink

    Any one know an easy to read layman’s info guide on discretionary trusts?

    I made a will with a discretionary Trust recently. It was pretty costly. The solicitor expected to be a Trustee and his hourly rates at present (will increase over time?) are eye watering and would over time suck up any legacy. I told him in writing that he was not a Trustee. This has left my son’s two siblings as sole Trustees and I know I need to appoint at least one other.

  6. ParentCarer permalink

    I agree with you Mark ,they won’t wait for your body to go cold before putting him in a supported living flat. I have seen this happen it is cheaper I just wish they would not go on about it giving them more choice as to how they spend their day. They have no choice it depends on who is supporting them as they are unable to go out independently. If the parent could see they would be turning in their grave.
    Regards the discressionary trust, unless you have relatives using a legal person is very costly in the long term as all their has to be costed for.

  7. I’ve attended the talks on wills and trusts that Mencap give, and thought I understood, but when I tried to sort things out couldn’t really understand any of it. The (expensive) lawyer we visited didn’t think a trust was the way to go, and I ended up completely bewildered. Anyone any advice on how I can get clearer on this? How many trustees do you have to have?

  8. ParentCarer permalink

    I was advised that the best way is to have an informal arrangement with other family members and not leave anŷ money directly to the disabled person. This assumes that the other family members can be trusted. The lawyer suggested this and he also felt that a trust was not the best way when he came to speak at a parent/carer support group unless you are leaving vast sums of money. You could set up a trust with just family members and not need to have a legal person on it . There is no limit on the number of people you can have as beneficiaries of the trust.
    I have been to the talks with mencap on wills.Did you realise that the beneficiaries after the disabled person dies can only be Mencap not other family members if you do it with them.

    • Weary Mother permalink

      I may be wrong, but when I attended lots of wills and trusts sessions by Mencap in eighties I got a strong feeling that the sessions were possibly? focused more on advising people to leave their money in Trust with Mencap. I also heard from a number of people AT THE TIME (may well have changed) saying that once the money was in a Trust with Mencap it was not always easy to get money out for the individual (their son or daughter) that parents had thought would be the sole beneficiaries? But perhaps Mencap can clarify this?

      But just one more worry for us aged parents. At the same time as grovelling pleading and begging for safe care, (happy care a want not a need?) now, And always the degrading placating of people who can thumbs up or down our sons and daughters, when we are seen by many (not all some are right alongside us) as pushy or greedy or difficult – usually all three….for just doing our…. life long job.

  9. Shirley Buckley permalink

    discretionary trusts. I am a trustee together with my eldest son and the solicitor. When I die half the house goes to the Trust for Martin’s benefit. All the Trust needs in it is a nominal sum until I die. Parent Carer you leave the money to the Trust when you die andthedisabled person is the beneficiary. However the rules keep on changing so watch out. Obviously dont trust Mencap .

    • The problem for most of us is finding anyone we CAN trust, given that most of those who are supposed to be providing “support” are the ones causing the problems!

      And then there is the Care Act to contend with. I have heard rumours that for “working age” people who have always had disabilities, the cap may be set much lower than £72,000 but cannot figure out how THAT is going to work. In my opinion, it is largely intended to be a political confidence trick, but it should make it much more difficult for LAs to sell off houses to cover care costs. If they bother to pay attention to it at all. I came across this quote from an article:

      … suspect instead that the agenda is, ‘let’s do for care costs, what we have always done for accommodation: let’s get the relatives to pay for what we should be paying for’.

  10. Shirley Buckley permalink

    There isn’t anyone you can trust anywhere anytime, but a discretionary trust is the best hope. As always go to Citizens Advice Bureau they will help and they can recommend Trust lawyers.

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