When I was about 6 or 7 years old I had a pathological fear of dying. I don’t know if it was the idea of my not being there anymore, simply ceasing to exist or that the world would have the gall to go on living, to simply keep turning without me, that upset and frightened me more.
As I’ve got older, this fear has, in a cliched kind of way, dissipated somewhat. People I love have died and the world has kept on turning, but these people are not forgotten, they are still discussed and talked about fondly (‘Do you remember how they….?’, ‘I only do this because Granny used to…’, ‘Goodness, you really do sound like her when you say that…’) But it binds us all together, more than I could have comprehended when I was younger, and there is a great deal of comfort in that for us all I think.
When Big was born the OH and I finally made Wills. We hadn’t done until then because, well you don’t do you? but with the responsibility of having children came the need to get our house in order. So the lovely Wills man came and talked us through what felt like a ridiculous raft of questions – How would our meagre estate be split should we die? Did we want it all to go to Big or did we actually want anyone else to get anything, and what about if all 3 of us died together? We answered these as well as we could but we were 30-something, unable to comprehend any of this Ever Actually Happening.
When Small was born, we simply re-did them to split everything between them.
But now… Small has complicated things. We cannot leave him money, because he will not know what to do with it and any assets he has will affect any benefits he’s entitled to. So we need to set him up a Trust. He will need lifelong care and he will need other people to make sure he is looked after. And by looked after I mean as well as he would have been were he still at home. I have just about come to terms with the fact that at some point – way down the line – Small will need to go into residential care. He will get too big and heavy and we will get too frail to meet his needs. But when I went to discuss re-drafting our Wills with setting up a trust in mind a new question arose. What if you were to die tomorrow?
For the simple answer is… We cannot.
When it was just Big, we said my brother could look after her. And he could have and still would. But they live 120 miles from here and they cannot have Small. They love him I know, but he is too much for us to give to anyone. He has so many many needs (and so much equipment). Our siblings have families of their own and lives, and jobs, and our parents are too old. Small would have to go into care because that way he would be placed with a family who know what they are taking on from the start and who would have housing which would be accessible for him. Logically he would stay here as all his care is here.
Oh God, my boy into care? My little boy? No…
But then what of Big? Send her half way across the country away from her brother? Ask a friend here to take her in so they can be near each other and give them some continuity? These are all such big but necessary conversations. And we are beginning to have them. For how much worse would it be for the worst to happen and for us not to have made a plan? How much would we have let our children down then? But it will take many months for us to not only find an answer, but to come to terms with an answer.
In the meantime OH and I must act like the US President/ Vice President, and never ever travel together…
Mencap have a great guide to Wills here:
Cerebra offer a £350 voucher towards the cost of seeing a solictor to set up a Will/ Trust for parents of children with neurological disorders here: