A Difficult Journey

Yesterday was a long and emotional day: it began at 5.30 when I left home to go to my sister’s house to collect her, to drive onto our Mum’s house. There , we were seeing a potential caterer at church – the first time we had been in Mum’s ‘domain’ since she died -, signing some paperwork at the funeral director , making an appointment with a solicitor and finally meeting with the Minister to plan the services at the crematorium and then at church. So it was a full on day, packed with emotion and difficult conversations, and throughout it, I was ,once again, relieved to have my sister by my side. We were able to build each other up when we get upset as nobody understands what it was like to be a member of our family better than she does. After all of those meetings and that decision-making, we were wrung out. I dropped my sister back at home at 7 pm and drove on home myself, getting back just before 9 pm.

I usually listen to Radio 4 in the car and so I was sucked in by the programme ‘File on 4’ last night. It was called ‘On Who’s Authority’ and it was detailing families which contained adults with learning difficulties and was exposing the battles that they were having with Local Authorities in trying to get heard in Best Interests meetings for their vulnerable loved ones. I knew from the outset that it would be a tough listen, but I could not turn it over : amongst others, it featured a 50 year old man with autism and epilepsy who had lived with his Mum all of his life, until she became 70, she had admitted that she could no longer cope and he had moved to a care home. His brother became his Deputy and ought to have been consulted over any changes that were made to his care, but social care made decisions without any consultation : he was moved from his care home to a supported living flat, on Christmas Eve, as his care home was closing, with no transition and there was no furniture in the flat as it was not ready, and the brother was powerless to intervene. I was horrified as families were ignored and were shut out if they made any complaints, their access to their offspring was limited as a punishment for making a complaint and none of the Provisions of the Mental Capacity Act were being adhered to.

Clearly after the day of raw emotion that I had already had, this radio broadcast reduced me to tears very quickly, as I worked out that when I was 70, Joshua would be 35 and he had no brother to be his deputy to defend him . We had been busy developing a funeral that Mum would approve of and we are old and capable enough to pick up the pieces of our lives, once our grieving is finally over, but how will Joshua cope when we have gone? He won’t understand the concept of death, he will just see that we are no longer around for him. This mourning that we are going through, though painful, is a natural process of adjustment, and Joshua will not have the capacity to grieve. One of Mum’s instructions to me was that we had to write a will, to provide for Joshua’s future. It took us years to come to terms with, but two years ago we finally went to the solicitor and made our will and we set up a trust for Joshua, appointing trusted friends and family to put his needs first. He will be provided for financially , as our only heir, but last night I began to worry about his emotional and practical needs once we , his parents, can no longer take care of him. It sounded from the radio as though he may well need a deputy or ‘warrior Mum’, as the radio called them, on his side, so I will need to attend to that once we have survived Mum’s funeral.

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