As my father will attest there was a point – when I was 6 or 7 – when I was obsessed with dying. With the thought of dying. And just how scared, empty, alone that made me feel. And then I forgot all about it. Grew up. Worried about other, more transient obsessions; boys, music, getting a job, meeting someone… And then I did… And then we had Emma… And then we got married… And then we had Alex.
And then I obsessed about dying again. Cold sweats. Because who would look after Alex when I was gone.
Who – when sometimes the effects of his disability drove me to distraction, made me want to give up, but I didn’t because he was my son, because I loved him to distraction as well – who would do that for him instead of me?
Who would find the compassion needed to understand what he was trying to communicate?
Who would care enough to change him, undress him, bathe him?
Who would take the time to find out what made him happy? Not just now, not just with cute smiley little-boy Alex but later, with grown up man-boy Alex. Probably not so cute.
This is a grieving process I think most parents of children with additional needs go through. In the usual scheme of things all you can hope is that you give your children the life skills, the toolkit, the confidence to get on and make their way in the world. But with Alex… he’ll always be reliant on the kindness of strangers. Throughout his life.
Because as his mother, I can only take him so far. I will get old, unable to lift, brain addled and I will no longer be able to fulfil that role. There was a time that thought had me in floods on the floor. Now it just makes me misty eyed as I type. This is life. This is how it is. I cannot change it. Railing against it makes no difference. All I can do is put in controls and hope the world will love him as we do.
So we re-did our wills with a discretionary trust for Alex. And with that came a sense of calm. They contain a detailed care plan, clear direction as to how we would like Alex to be looked after. We didn’t want anyone trying to second guess us. We wanted no grey areas. This is what we want done, this is how we think you should do it.
Please include Emma at all times. But don’t make her do it by herself. Because that is too much for anyone to carry by themselves. I thought of detailing our care plan, but actually, everyone is different, and everyone will do it a different way. So I don’t know how helpful it will be.
What I would say is: Don’t put it off. Get this thing done. I can’t sugar it: after my initial consultation with a very lovely solicitor I cried in my car, as my lovely friends who I texted saying this was so so hard to do and who texted back saying ‘we know, and we’re sorry’ know only too well.
But the relief of This Thing Done is palpable.
If you live in the UK Cerebra do an amazing voucher scheme where they will put £350 towards solicitor’s fees.
Our solicitor capped their fees at the voucher level. Which was lovely. http://w3.cerebra.org.uk/help-and-information/will-and-trust-vouchers/ Mencap have a free guide to the different wills/ trusts you can make.
It’s incredibly helpful: https://www.mencap.org.uk/our-services/wills-and-trusts
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