our son is 42 now and lives with us again. He was a chemist and worked all over the world until 2008 when he took MS on top of diabetes Type 1 he already had. He is now blind and his swallowing is affected.
He was never married so he sold his flat when the MS took over and built a room onto our house for himself. He is never or has never been able to even be in the part of the house he built his MS has been so fast moving.
Yesterday we took him to a respite centre 100 miles from home - it is the only help we get - this is what happened.
We were met by the carer who, the last time he was there, pricked her finger on his insulin pen. It resulted in our son having blood tests for everything which were all negative so that was resolved. He had to get concealed needles and lancets, that again was resolved, we got the needles. Next was the swallowing, he has been seen by speech and language therapist and has to have soft food all the time. The carer said 'No he doesn't the last time he was here he managed everything didn't you John' John couldn't remember. His short term memory is ok when you are speaking to him at the time but five minutes later he has forgotten. I said he has to have all his food softened because he doesn't have the power to swallow hard food. Oh well, because we said that last time and he managed she didn't see any problem this time. We left it at that because they will find out for themselves.
Next the most important part -
Another carer entered the room and we were letting them see how the new concealed needle on the pen had to be used to administer the insulin. He has to hold the pen very steady and push until a clicking sound is heard and then push the top to release the insulin. He can't push the top he hasn't enough strength in his hands and they shake too much the carers have to do that. this is what she said -
I don't know why they don't take all that away and give him tablets. My mother in law is diabetic and her sight is not very good and that 's what they did with her, took the whole lot away and gave her tablets . I said that could never happen with John, he had/has juvenile onset diabetes his body produces no insulin. I said your mother in law will have type 2 diabetes completely different from John - no she said she is diabetic and that's what they did with her and she is fine. She said you should ask about that. I ignored her because our hands are tied if we say too much they argue back we are wrong and would result in them saying they cannot meet his needs.
Today I am going to contact our diabetic health specialist nurse and ask her to 'phone them just to ask how they are getting on with the new concealed needles and she will tell them how important his insulin is and his food etc. without mentioning his father and me. We are not happy this time. It was ok when John wasn't so bad and could tell them himself but his mind won't let him. He has primary progressive MS and the deterioration has been very fast.
Result I haven't been able to sleep. Right now is time for his blood test and emptying his bag because he has suprapubic catheter. Whether we will be making the long road back again today for him remains unclear at the moment. I write everything in a book I don't think they read it.
That is my story. What do I do and are we wrong in putting him there.