My Dad has been in hospital for 10 months following a catostrophic SAH. We were told he probably wouldn't survive at the begining and the docs were very surprised when he started to breath on his own (we were sat waiting for them to come and announce that they were going to remove his breathing apparatus to see if he stayed with us or crept away quietly but typical of my dad he beat them to it!) he was in a coma for 3 weeks.
When he came out of it he had no movement in his arms or legs and was unable to speak. After a while he had said the odd word, just very occasionally. He began to move his arms and has a pretty good grip in both hands, however he hasn't progressed since.
He had started to eat soft food and had continued with this for some time but about 2 months ago began to store his food in his mouth. It turned out he had developed a problem swallowing and is now fed via a peg into his tummy
I must add we ( me, my brother and my Nana, Dads 90 year old mum) have very little influence over what happens to dad as he is remarried and his wife is next of kin ( she really does like using this term!)
It was looking like dad may return home (would have required carers visiting a few times a day & lots of adaptations) but once he stopped swallowing, he had a batch of tests and it was discovered not only was he unable to swallow, he has a problem with his lungs (probably caused as a result of a feeding tube inserted incorrectly into his lung and not only filling his lung with liquid feed, it was also perforated, but as he couldn't speak, he was unable to tell anyone)
We have also been told he now has the onset of Parkinson's, caused by the SAH and diabetes.
He has now been moved to a residential care home as his condition needs more care than can be given at home. This is his absolute worst nightmare. He had his own business, was such a physical person and a bit rum with it!
I cannot get my head round that this is where he has ended up, I walked in last night and it felt so wrong, his eyes tell me that he is living the nightmare he never wanted.
I am finding it really difficult to accept, not for me but for him because he repeatedly said if ever he was in a situation where he couldn't do things for himself (his favourite phrase was " wipe my own arse!") he would rather not be "here"
I feel like I am letting him down all the time, I look into his eyes and I can see him saying " I don't want this, I told you I didn't "
Sorry if this sounds like self pity, but him being in a care home has really got to me as I know he would not want it this way. I know we have little choice but when I know it is against what he ever wanted, how do we deal with this?