Feeling frightened and helpless

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?

Hello St Jude, you really do need help. I am glad you rang the PD helpline and hope that you don't have to wait too long for advice.  I am sure there are people on here who can offer support, and it looks as if your Father's medication needs reviewing. Best wishes, flo


   Hello St Jude

                   When I read your post I must confess it brought a tear to my eyes,It was like reading  my fathers last year of his life,I can only surmise that your precious Dad has either very advanced PD,  for which he should be recieving medication which can be very effective incidently, or it is Alzeimers which of course means Dementia, which is why I feel so sad,as  the symptoms you describe sound as if that is what ails  your Father. However if the stafff of  the Hospital stopped his meds he will have quickly slipped into the most severe form of  PD ,I just cannot understand why alternatives " of medication" were not tried,or investigated there are many and varied PD drugs that can rapidly bring this horrible disease into line and would give your Dad a much much better quality of life.but there is always the dark shadow of Dementia lurking when I read very sad cases like yours,the screaming and agressive behaviour was prominent in my Fathers last days, I wish I could make this post more cheerful and positive but until your Father is on anti PD medication he will show little improvement , keep asking your Parkinsons Nurse and your consultant why he is not being offered  one of the many drugs on the market all are effective, its often a bit of trial and error you understand, as it was with me, I am now taking Dopamine only,along with anti depressant Mirtisapine , Madopar and Tolcapone were also very effective in controlling parky in my case, I feel awful not giving you a lift, and I hope I am mistaken we can only hope.

                           I wish you well Jude in your most painful of journeys

                                          Kindest Regards               Fed