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Health. (And Social Care)

October 5, 2013

Depressing post alert.

It’s been an odd, and rather chastening last few days. A throwaway remark has dragged screaming to the surface, the deeply buried thoughts about my mortality and the terrifying thoughts of what will happen to Steven after I’ve died.

On Wednesday, I bumped into an old work colleague. I have had my own private counselling practice since June 2011 – he is several years ahead of me. We were comparing the plusses and minuses of working for ourselves compared to working for the agency we both used to work for. Then he suddenly said: “What arrangements have you made for notifying your clients if you dropped down dead tomorrow?” Shit! I hadn’t given it a moments thought but obviously I needed to. I thought of all the colleagues I know and who I trust the most with delivering the news of my demise and helping the clients work through what they want to do about their ongoing therapy.

Since then, I’ve been mentioning the subject in all my sessions and inevitably that has set off an exploration into their mortality and attitudes towards death. Heavy going but necessary.

Of course, it’s raised again all my fears about Steven and his future following my death. I’ve done my will. I’ve done what can best be described as a post bereavement best interests statement. I’ve written volumes of instructions about likes and dislikes, history, favourite topics etc.

It also brings up the under the surface issue about our house move. All my motivation around the move is about trying to secure some sort of long term security for Steven.

And as I make all these plans, the devastating reality knees me in the balls. It won’t matter at all, at the point of my death, whether Steven is in his own social housing tenancy, whether he has been living in a private rented tenancy with me as joint tenants (which is a possibility if we win the HB appeal), or even whether Steven is living back in his own home which he’ll be joint owner of following my death.

No. What will happen within hours of my death is that Steven will be whisked away to some temporary holding residential accommodation until a more permanent one is found. The best interests statement and the books of useful information will be tossed in the bin. Nobody from social care will be interested in the losses of his family, his friends, his support workers, his important belongings. Social Care have never showed the slightest interest in their value to Steven up to now – that is hardly going to change when I’m not around to speak up for him.

I get flashes of these thoughts every now and again. They often arise when I’m watching Steven thoroughly engaged in something and enjoying himself. Today, he was hunting Olly Murs’ videos on You Tube and getting very excited when he found Dance With Me Tonight. Even if he is allowed a computer wherever he ends up (the residents weren’t allowed one at the positive behaviour unit), who will have the interest to sit with him for a couple of hours trawling You Tube.

I might just leave a further instruction for the person who ends up notifying my clients of my death – they can ask them is they fancy adopting a large, excitable autistic man, with a penchant for Mr Bean and Take That. After all – I won’t have to worry about professional boundaries anymore – I’ll be dead. I wouldn’t of course. But one final thought – even if someone did step forward – I doubt social care would sanction such a move.

And that is that.

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From → Social Care

7 Comments
  1. Dr Mags permalink

    Mark, God bless you and Steven. This is a really tough one….

    Can I share my bother’s story with you? Skip this if you’re too busy.

    My brother David is now 66. He lived at home with my parents me and his other sister for all of his childhood and a lot of his adulthood. When our parents started getting older, I spoke with them about David’s future, but they were reluctant to have that conversation. Our Mum died and Dad carried on looking after David. When he got into his 70s, I suggested that David moved to be near me. I’d worked in residential care for people with learning disabilities and seen (too often) that people can lose their parent, home and everything familiar all at once.

    After some time ( and lengthy discussions) we set about arranging the move. We had an amazing social worker (good grief!) who helped enormously and David moved to a wonderful residential service. He’s been there nearly 20 years and Dad had many years of visiting him and seeing him really happy and fulfilled. Dad died two years ago – David had a hard time with this, but we’re so glad he was in such a supportive environment. My sister and I are closely involved with David’s care and have great confidence in he service…it’s had its ups and downs, but overall it’s been really positive.

    I’m telling you all this, Mark, because I have such respect for what you do for your son and wanted you to know that things can go well. I really hope things smooth out for you soon. I don’t talk about David’s journey much, but wanted to share this with you.

    God bless you both. Maggie

    Sent from my iPad

  2. Weary Mother permalink

    Mark, as we all know, we all pick up? It will pass, pushed back where we have learned to keep it, in a day or so? , But it is up to us ALL to do what you are doing Mark; and fight back even harder, for better. .

    Repetition warning!! In the eighties, what we parents of children and young people with disabilities saw as the new dawn, broke and it was sunny. We had all felt up until then, in spite of all our outrage and all our young energy, their was no hope. Only fear of the future; for our only option at the time was the nasty inhuman abusive and much feared institution or ‘bin’.

    But our children, those that had been kept at home ‘advice’ (he/she will never do anything etc’) and all the parents of the institutionalised -, those who came before us, found new hope and a renewed energy. Group homes, self advocacy etc etc. and education for all!!! A wonderful wonderful miraculous time. And there was was a respite from that pit of the stomach ever present fear of…………………….. what will happen if …….

    I remember going to the seaside for a weekend with my son’s’ small siblings. For the very first time. They were on their own with mum and dad..Their brother happily off with volunteers, camping with the extention cubs. I realised for the first time that other ‘normal’ families felt like this all the time. I didn’t know………..

    But, all of these new services, rights and freedoms came about through the efforts of parents and families and outraged others who fought alongside us. Also the institutions were closing, money was available, facilitated by Policy to save the money spent on expensive old buildings etc. Money poured into large Charities, charities who currently appear to have forgotten who and what they are for?.

    Families/ parents fought and struggled to make sure that money was not all wasted on new jobs for the same people,, much was,wasted: when hospital sites were sold, some almost given away by people whothe cash as career ladder and ‘just for this yea”s budget…. next year is someone else’s problem….

    How have we let ourselves be socome terrified of Public servants? This on top of all our unavoidable fears? We are fearful to speak out for fear of repercussions on our children. \Those of us who have challenged have paid. Mark you are still paying. We talk of hate crime and we can go to the law for protection, yet we are afraid of upsetting the people who are paid to protect us and ours.

    What, exactly, does Adult and Family Well Being, mean?.

    We parents did it before, and we had a time; a future without the toothache fear of …………………..what if….!

    We have to do it again. We cannot permit a society where the vulnerable are put in back in the ..
    ;
    We can do it. If we do it together.

  3. sparrow permalink

    Hi Mark – as someone with an autistic son who sounds similar to Steven I think I understand, As things are with my son at present I know his care provider would act in his best interests. That is a consolation. However, whether social services, especially in the present economic climate, would over-ride that to save money? Yeah, it cd well happen, despite everything we put in place to safeguard them.

  4. Lisa permalink

    Mark this is uncanny. Last night I lay awake petrified thinking totally exactly the same thoughts. My son only has me. When I die this is exactly what will happen. Realistic all the way.
    It made me get up, throw away junk food, do a few stretches and swallow some vitamins. With you all the way!

  5. Lisa permalink

    Also , nothing is concrete. Usually the care that care providers deliver changes for the worse, when managers, team leaders and staff leave which in my experience, they always do. So what may be working well today may not be tomorrow. If the person isn’t fortunate enough to have a family member involved in their care, unless they are exceptionally lucky, it really will be minimal care at best.

  6. Louise Kerr permalink

    Dear Mark , in jan 2004 , I adopted !!! a very large , excitable Autistic ( non diagnosed ) , learning disabled man , with a love of clocks , radios , batteries , casualty , heartbeat , and the weather !!! , oh and not forgetting the FOOD !!!!! , So thats 10 years in jan coming , and oh my gosh what a story i could tell you , anyway in a nutshell all i am saying is that there are people out there that truely care , and God has some strange ways of sorting things out , and i am not a religious person at all , but i thank God every day that i found !!!! my grady gray , ( Look at my profile pic, the big guy is my Graham who was the big 50 this year , and mygoodness how things could have been so different for him when he lost his mother if he didnt have a friend with a very large mouth who would of fought the world for him , and very nearly , almost did in many ways , ) Jump ten years and now i an ill myself , and i now worry about grays future if a am not here , but thank the lord i have two daughters , one of which has a very loud voice just like her mother , and two sons , who all think the world of our grady gray and would definatley carry on the fight to keep him in his own home . My youngest son was only 13 when graha came to stay , and he now calls my son DAD , which some people think strange , but i think is the greatest honour , and when asked why he always says because , ” Jamie looks after him good ” , What a guy my grady gray is , he swears non stop , says the most rudest things , and talks 24/7 , I have had people say the crulest things as to why he lives with us !!!! , and do you know what , after almost ten years of the most emotional rollercoaster of a journey in life , i wouldnt change a thing because it has shown me that you cant trust anybody in authority(Social services ) , and those in the caring field that have our best intrests at heart , dont know what caring is ! Any way mark must go now as we have found a new chanel on tv and Little house on the prairie is on at the same time as heartbeat , Oh my what problems this is causing even though he has both on dvd , but thats not the point is it !!!!!! LOL , All the best Mark to you and Steven , and i prey good health bestows you for many many years to come x

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