Hi , I am new to the forum and have just joined out of desperation.
To summarise, My dad who is 79 was diagnosed about 2 years ago and has gone from someone who visited the gym regularly, ran and enjoyed socialising to today being confined to bed, unable to speak, toilet himself or feed himself. We looked after him at home until 6 weeks ago and whilst that was very tough ( he would call for someone to help him to the toilet about 10 times in the night and needed a lot of help to stand/ dress/wash etc )he suddenly deteriorated after having a catheter fitted and was hospitalised due to the infection.
We are a large family who have taken it in turns over the past 2 years to care for our dad and we all found it very tough as we all work full time, but he did so much for us all growing up that we just wanted to look after him and do the right thing. He was very difficult at home, changed from the warm, loving , kind and easy going dad we all loved to a morose, depressed and uncooperative man. We all realise it was the PD that was causing him to feel like this but anyone who didn't know him found him hard to interact with. The most frustrating aspect of his illness was his inability to communicate and all the problems and misunderstanding this led to.
Anyway he had to stay in hospital for the last 6 weeks and in this time they stopped his medication, we are not really sure why but the nurses said he wasn't benefitting from it. He seemed to sleep a lot more and to be honest this was a relief as he was not so agitated and distressed, however he constantly tried to convey that he wanted to go home and it broke our hearts. In this time he became doubly incontinent and became unable to feed himself.
He was granted continuing care as we had realised he would have to move to a Nursing Home. Finding a suitable home was a nightmare and we had no support. But we eventually found one close to my home and he moved there last week. We told him it was an interim measure until we could look into getting him home ( we just could not tell him that he won't be coming home)
Since he has been there he has become even more agitated and just screams every time we go there ( we go at least once a day, usually at lunch and supper so we are able to give him his food ). It is heartbreaking and we don't know what to do. The staff seem nice but they don't seem to know anything about PD and they are treating him for a water infection and think he will calm down. Either that or they think he may be having hallucinations and if he doesn't improve they will consider giving him anti psychotic drugs ( they have obviously had the doctor to look at him ). He just lays in the bed all day unable to do anything for himself. He has become so distressed when we are there that we have ended up in tears, at one point he grabbed my hair and I was quite scared.
I have just contacted the local PD support helpline after looking on this site and the lady promised to speak to my dads PD nurse and arrange to visit my dad.
We have had very little support from professionals and no one has ever discussed our dads illness and what stage he is at or what we can expect. I can't sleep at night worrying about him and what he must be going through. I think he feels abandoned and just wants to give up ( my mum died 8 years ago and he really misses her and seems so depressed). He has absolutely no quality of life and I can't bear to think of him suffering like this for much longer.
Has anyone been in this situation and if so can you offer any advice?