Dear Isonor, thank you so much for caring enough to write to me.
I am happy for you and your brother that he has found a place where he can be truly cared for, must be such a great relief to you.
Unfortunately my son has never talked or been able to walk unaided,but up to a few years ago we coped very well and had a good life with him. He used to go to a centre but I was always being called from work to take him home as he was being"a danger to himself and others". I told them not to sit him at the dinner table with others, but they did, result he cleared the table, I told them he was a Watcher, not a doer, he just couldn't stand all he people being around him etc, and played up nearly every day. It wasn't until he was in his 40s he was diagnosed as being Autistic and all his so called bad and challenging behaviour suddenly made sense. In the end we just kept him at home and with routines he knewcwevwere doing fine. He loved music, had his headphones etc, knew exactly what and when things were on TV, had an extraordinary memory for things and places,ie, he would have his headphones on, then suddenly take them off and point to the TV and make a sound like a clock ticking and I knew it was time for Countdown, we never found any explanation for these things, he knew at breakfast that it was Thurrday and would make pointing gestures and I knew it was Question Time that night, how he knew these things we just don't know!
Suddenly one day,he threw his headphones off and never put them on again, and from the on,gradually lost all his skills ,and ability to walk, became incontinent, first just wet, then last year doubly. He has been to Specialists etc, has a serious blood disorder, but we were told the Haemotologist didn't want to go down the bone marrow path as it wasn't in his best interests! We , have awful trouble getting his blood tested because now they say they can't do it against his will and it was only after a long fight that a nurse comes to the house and we hold him whilst she takes the blood. Just one of the many things wrong with my poor
son. Now he doesent know what he wants, some days he sits on the settee then tries to get off it, we put him in his chair and take him into the kitchen or bathroom and he immediately wants to go back to the sette, this happens sometimes heart 50 times a day. If we don't take him he slides off the settee on to he floor and he's so heavy we can't pick him up and have to wait for someone to help us. He us 57 in July and as you can guess we will be 80 this year. It's so hard to toilet him now, we stand him up holding the safety rail, pull his jeans and nappy down, sit him on the toilet, then get him up and try to put his nappy and jeans back on and now he's going down and once again we have great difficult getting him up. We have two carers who come for 4 hours one on Monand Thursday and one on Tues and Friday, they are very good and weather permitting they take him for walks, but they can't toilet him by themselves so we are still doing the hard work.
This must sound awful to you, but it's doing me good just writing it down. He has had a good life with us, been to California twice, Florida once, Cyprus and Tenerife, and up till last year Spain in May and Sept, it's just do sad to see how things are now. I've looked round here for maybe daycare for a couple of days, and am waiting for a reply from a home that really looks too good to be true but will go and see what it's like and see what happens. He needs to be fed and toileted and they dont seem to want people like him and the places that will take him are full of old people not people with learning difficulties just Dementia etc and we just can't do that to him. So sorry to have sent you this long saga, but thanks for listening,
Yours so sincerely
Tired and sad older Mum
