My Father is 84 with Parkinsons and at the beginning of 2020 was living at home together with my mother with daily help provided by home carers morning and evening. His condition and symptoms have worsened, the dyskinesia has increased and his communication has become very poor. Following increasing freezing episodes at home resulting in 999 calls in some instances, one of which resulted in admission to hospital in February this year as he was found to have a water infection. While in hospital his ward was isolated due to vomitting bug (which I brought home too following a visit) for two weeks. To cut a long story short (if I can!) we all wanted him out of the hospital environment as soon as possible but the only solution was for him to be moved from there to a nursing home (my mother was unable to cope with him at home and we were getting knowhere getting him sufficient help at home). While my father resisted moving to a nursing home, he did accept it and he has received the availability of 24hr care which he needed. We spent a lot of time making sure his room was personalised and comfortable moving in a lot of his furniture from home etc. We also ensured that we visited him on a regular basis.
Move forward to today and we have all had to deal with Covid-19. We have been unable to visit him within the the home since April and have had to resort to phone and FaceTime. However, his communication is so poor we all struggle to understand him at all. If we manage to understand 20% of what he is trying to say that would be a major success. We can see how visibly frustrating it is for him as well as us and the care home. We could help when we were able to go into the home and to his room. I feel bad to say that I personally dread taking a call from him as I cannot understand most of what he is trying to tell me. We have produced some laminated flash cards (which his SALT advisor said were better that what they could provide!), I’ve also tried setting him up with numerous speech apps on his iphone (another subject altogether). He appears to find it difficult to use any of these despite encouragement as motor functions are quite poor. Wierdly, he struggles even to respond with a yes or no to simple questions. My brother and I are very patient with our father and do take a lot of time trying to understand him. Unfortunately, my mother’s hearing is getting quite bad (even though she thinks its fine). So combine this with my fathers communication and you can only imagine…
All the way through this we have consulted with his Parkinsons Nurse, the SALT (Speech and language therapists) and the care home. There just appears to be very little that they can do. In fact the tools and advise provided by SALT have been next to useless I’m afraid. Plus now with covid-19, no-one will go to see him in the home so he’s on his own. He does have a Lasting Power of Attorney set up for Health & Welfare which we do not know how to use/activate - I thinks that’s our next step as we are increasingly having to speak for him.
We do send small packages into him each week with cards and pictures which he appears to appreciate. Other than that we all feel so helpless and do not know how else to help.