Hello Jon and welcome to the forum and your interesting post given your circumstances. I know you were asking particularly about the experience of carers but I, as one with Parkinson’s, would like to make a comment or two if I may.
First you mentioned that you feel your creative side is slipping away and maybe that’s true but equally it doesn’t mean there is nothing you can do. There is quite a lot of evidence to suggest that people with Parkinson’s demonstrate increased creativity and a quick search using Parkinson’s and Creativity will bring up a lot of papers that might be interesting for you to look at. A key point to focus on I believe, to live well with Parkinson’s is not to concentrate on what you can’t do or no longer have but what you can do and the skills you do have. If you can try to think outside the box and you can often find ways to continue to do what you always have with a few changes. Asking on the forum is always a good idea since others may well be having similar problems and have come up with solutions - I recall for eg a number of posts from guitarists. Also just because you can no longer do one thing remember that could be the time to try something new that gives you equal satisfaction. For example you mentioned you enjoyed fell walking, perhaps try nordic walking which I took up a couple of years ago. It is a particular technique and is harder work than ordinary walking so may be a substitute if you do have to give up the fell walking or more likely, the easier routes no longer satisfy you. I’m talking very generally here of course but don’t believe you are just losing things that give your life meaning because the reality doesn’t have to be like that - with or without Parkinson’s life is still what you make it, it is still your life so why not make it the best you can.
I was sorry to read of your sister’s diagnosis that is a very difficult and debilitating condition but has clearly given you an insight and understanding into the caring role and you will know how hard it can be. I would agree with the comments Janice has made about keeping the lines of communication open. Parkinson’s in most is slow so there is time to adjust and adapt to changing situations. There has recently been a post on the forum that would seem to reflect your fears and if you are interested this is the link End of relationship with deep love
Please try not to get too far ahead of yourself. Parkinson’s shows most of us the best way is to live in the here and now, in the present, enjoy today and don’t worry too much about the uncertainties of the future which may never happen - you can only plan so much and if you spend all your time worrying about that you miss the pleasure of today.
I’m not sure how much sense this will make to you just now but I hope you are able to take something from what I have written which will help you turn the negatives into positives - not always easy but worth the effort.
Tot
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