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Plan Z

April 2, 2017

It’s an odd sort of space at the moment. Not sad. Not depressing. I can’t quite find the adjective.

My sister and I had that conversation the other night. That one. The one I’ve been putting off for years. What plans are in place for Steven following my death? There I’ve said it now. It’s on record. You heard it. Time to start planning, or tending to my affairs as they used to call it.

I’m not unduly bothered about my death. I’m quite intrigued my next incarnational encounter with Whistler’s Mother. We had the bloodbath at the French Revolution, both suffered through the Irish potato famine and in more recent times had a face off across the floor in the Court of Protection. We have unfinished karma, so we’re bound to run across each other again. My friend and I were discussing how you become invisible as you get older; nobody notices you walking down the street or in a restaurant. Perhaps death is the final invisibility.

What got me and my sister onto the subject was the dreadful run of stories this week of people suddenly being carted off to ATUs. Four online friends have faced this horror in the past few days. Their family member isn’t ill. They don’t need assessment or treatment. For various reasons, unrelated to the person being detained, the support packages have broken down. Or, crucial parts of the support package that have been promised, haven’t transpired, leaving a crisis situation. Whilst alive, this is the fear that every family with a learning disabled member faces daily. It keeps me awake often. It has affected my health, physical and mental. A change of council policy, a new social worker, a reframing of a support need and BANG, everything you know and rely on, gets thrown up in the air.

Death certainly throws everything up in the air. I’m not even trying to tend to the emotional preparation for that. The important thing is have written down, every aspect of Steven’s care. Chose a “management team” for Steven’s ongoing care – it is too much to ask of one person. Not because of Steven but whoever takes on the task will be entering a bureaucratic kingdom from hell.

I’ve made a small start. I’ve been in touch with the bank to make sure the Personal Budget account and Steven’s account don’t get frozen upon my death. That has to carry on as normal. I’ve started to write a “Best Interests” statement, going into great depth why Steven must be allowed to continue living in his own home. But will it be listened to? I’ve began several lists: the things I buy in the weekly shop; the order of songs on Steven’s holiday cassette; the names of people in the 26 photo albums.

The real truth is that I could live another 10 years and spend the whole time doing this preparation.

And it won’t be enough.

From → Social Care

  1. Jayne knight permalink

    Yes but you can have a crisis at any time and it’s just really important everyone knows what to do and the worst crisis could also be that you are alive but very ill
    Job’s comforter I am but been thinking masses about this Mark for my own personal reasons too,
    I’ve got some practical thoughts about how to make that planning a possibility
    I have no real answers to the emotional side but I do have some suggestions and thoughts about how things might be made easier just so you know things are in hand under every eventuality ,

    • LizzzieD permalink

      Could you expand on that? I am fairly bereft of ideas right now.

  2. The future is very scary. We don’t have any services in our country and we don’t have family to help out (with the exception of our first born). We are thinking of starting up our own small residential unit.

    • Yes, many of us want to do that too, Bright Side of Life.
      If we could team up with parents in our area, we could develop our own services.

  3. Pauline Thomas permalink

    That is why most parents of loved ones with a learning disability want to outlive them.

  4. Dorothy Jump permalink

    Yes we all worry about this. I am a Parent/Carer for my son who is 43 and has Learning disabilities, Autism which he was diagnosed last year after me fighting for an assessment and also a mental health assessment which he is diagnosed with depression and now on a antidepressant I have challenged this because he deteriorated in health and mood and also I felt services were not joined up with his care to relate to us which this is were the gaps happen and mood escalates and becomes a major issue. Communication errors happen also.
    I am on an adult partnership board meeting as a local Carer representative and I took a project to it relating to the FitzRoy society and what happens when I can no longer care and also die so I talked about this and asked it to be actioned which it has and been added to the fish tale plan done at this meeting also meetings have been actioned for Carers to see how we can put something together to action this and explain about this. Myself I would like it to become part of the care plan documents so it’s mentioned what plans have been put in place for the Carer and the cared for in a crisis and other situations as mentioned. This makes a lot of sense and hope this can become reality and a written document to prevent things going wrong.

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