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Death Duties

May 12, 2018

It’s been over a week since NHS England snuck out their LeDeR report and I’m still consumed by the horrifying statistics it revealed. In my darkest moments, I find myself echoing Kenneth Williams’s last words – “Oh, what’s the bloody point”. The utter powerlessness I find unbearable.

This time last year, I fell into an existential void. It lasted all the summer and I only started to emerge from it towards the end of September. It wasn’t depression. It was too Schopenhauer for that. I carried on doing my usual stuff but spent an inordinate amount of time going back to bed. To sleep. To eat. In hindsight I can see that it was a collection of things that triggered the void. Steven was needing less of me. It challenged the theory that I’ve had for the last 20 odd years that I’ll be Steven’s hands on, 24/7 carer until the day I die. I also published my book: a diary of 2016 & I’d realised that I wouldn’t be writing anything like that again.

But the biggest tipping point into the void was that I’d finally completed my “death plan”. It took months of emotional upheaval trying to assemble a document (100+ pages) that would ensure Steven could carry on living his life as he’d want to, after my death. It wasn’t a totally bad experience. I’m a geek who loves a list, so compiling lists of Steven’s favourite cover versions held a warped pleasure to my anal mind. It was only on completion of the plan that the sheer futility of the exercise hit me. I can rally the troops. I have rallied the troops. But at the end of the day, Steven’s future will determined by a social care professional conducting a best interests assessment and my plan may not be worth the paper it’s written on. After all, nobody is going to listen to Steven and his ideas on how he wants to live his life.

Anyway, it was a combination of all these things that led to the void opening up and this week, I could sense it reopening with an impending sense of doom. I woke up one morning having done some maths in my sleep. If Steven is going to die 25 years early and before he hits 50 (even though he may not be ill) then I will have to live until I’m 81 so that I can bury him. So that I can prevent my death plan ending up in some social worker’s confidential waste bin. The irony is that at the moment Steven receives excellent care and he may buck the LeDeR trend. He’s living a good life that could end abruptly, long before he dies if his current carers, myself included, aren’t around to ensure he lives. His future is as fragile and random as that.

All week long I’ve been having conversations about death. But those same conversations are about living too. I had a discussion with my brother in law who’s had a recent health scare and he remarked how infrequently he visits his doctor. I’m the same. I’m 59 and I’ve only recently had my second over 50s annual health check. It doesn’t occur to me unless I’m feeling unwell. I think it’s my upbringing and my class. Doctors were seen as very important and their time must be wasted on trivial ailments. Should I be more proactive about Steven’s health? About mine? The other day I had a conversation with two guys at the gym about their use of steroids. They were fully aware of the health risks but felt they were manageable. I found myself being surprisingly non judgemental. They were living their lives. You can’t knock that. Then I had a session with a client who is 74 and he announced he’s lost over a stone in weight in just over a month. The fear was there but then he talked about all the meals he’s been skipping whilst he’s been climbing trees, erecting a summer house in his garden. As the session progressed, the death fear didn’t dissipate but the room was full of the sound of him living.

This is all very random but that is where my head has been over the last seven days. I was introduced to death fairly early on. My mother died when I was 16 and a year later one of my closest classmates died of a brain haemorrhage. Events like those tend to focus the mind and set something up for life. I even had a short lived phase in my early 20s where we would have Joy Division parties and sit around predicting our own deaths. The LeDeR report has taken me to a familiar place but it carries a bleakness that feels very new. And at the moment, insurmountable.

Steven lives. He hasn’t “had his time” yet. Whilst I was chatting to Wayne about cancer fears, Steven was having a shit in the toilet. He was singing The Proclaimers, “I’m On My Way” at the top of his voice. I think he truly believes that he’ll have Al Jolson sing, “I’m sitting on top of the world”.

And that thought has me laughing out loud, bursting with love and sobbing my soul out.


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  1. Clare Palmer permalink

    Thank you for writing this, Mark. My daughter lives in a supported living house, having a good life on the whole with staff who have her interests at heart. But we are about to have a workshop for families and carers about supporting people with learning disabilities through bereavement, and when I start to think about how it will be for her when I am gone I feel skewered with pain. Not just because of my fear of what will happen to her without me there as advocate, which is huge, but how to try and give someone without words who doesn’t look at photos any kind of sense of death, what it means, that I won’t be coming back and so forth.

  2. Frances permalink

    I see myself as optimistic in all events but this week has been a very disheartening week following the report, because of lack of action.I share your fears, despite our best efforts the system seems not care, individuals may do.This week we were given a report to see about our son well intentioned, but it stripped away everything we have achieved against impossible difficulties and odds for our son.It was not the intention, it was mainly observations in crisis situation when not in his normal loving stable base but it has hieghtened my fears to a level that I am left with a hieghtened feeling of doom when we are no longer around to ensure our loved ones are understood and heard

  3. Pauline Thomas permalink

    Mark I worry not about my son dying. I worry more about the quality of the life that he is living. I worry too about the quality of mine and my husbands lives, which are now woefully poor. My son is medicated to stop him being too worried, angry or anxious, but the side effects are robbing him of any joy in the things he used to like. I would rather my son live his life, if a short one, happy and contented and apart of society. I do not want him so drugged up that that every day is a trail to get through. That is not a life, that is an existence.

    I would like to see the government commission a report that looks at the quality of the lives of people with LD. Looks at what activities they can have. What jobs they can do. Invest in giving them a better standard of living. I want to see action and not a Winterbourne View fiasco where the whole report was shoved down the sofa. I want the minister involved to act on it and not run away. I want the report to be open and discussed and not buried by other news like the timing of Leder report. I want to see decent politicians act decently towards people with LD and their families who are struggling on a daily basis to live a life worth living.

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