The hardest thing I have found throughout my dads illness with pd is coping with the different stages. Dad has had pd for about twenty years and it is now advanced and he also has related dementia. I had minor understanding of the illness as his elder sister also had pd, and although she lived in Australia I faintly remember visits where either the teacup would shake when she held it, she had trouble walking for too long and later having her food cut up for her when we had all gone out for a meal.
This did not however prepare me for all the things my dad and the family would face.
Thinking back over the years I have become upset as things have progressed, from his initial diagnosis, when he had to use a walking stick and later a wheeled frame, when his weight loss dropped rapidly, his first fall, choking after having difficulty swallowing, and each time after a while I have come to terms with the fact that these things are now happening and moved on until the next thing.
The most difficult thing to come to terms with from my point of view is the dementia. My dad has just come home after a two week spell in hospital, of which I think I spent every morning and night of the first week in tears. The man that laid in that hospital bed was not my dad anymore. I can no longer hold a conversation with him and I now help him to do things that he used to do for me such as eating and putting him to bed. It is so sad. He is only 75. Not really old at all!
He now has carers coming in three times a day but I still worry about how my mum copes when they are not there. She isn't in the best of health herself,but unfortunately I work full time and cannot be there all the time.
What I dread the most is that one day he may not know who we are, but I have realised over the last couple of weeks that I have to take one day at a time and appreciate all the good things he can still do.
Sorry for rambling on, but sometimes you just need to let it all out.
Hi isee, your story is really sad and I can only say how sorry I am that you are having to experience your Dad's declining health. I know its heartbreaking when you feel like someone close to you is changing and there are things you don't recognise. Don't be afraid to talk to your Dad and Mum as they may both be feeling lonely and are so grateful for your help and support. Remember that although it may not seem like it, your Dad may also be feeling sad and whilst he may not be able to communicate it very clearly, the 'old him' will be in there somewhere and he will appreciate everything you're doing for him.