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