Hello to all who have contributed to this thread. I thought long and hard before writing a post and indeed wrote and deleted it several times, as I felt I was intruding on a thread where I had no right to comment. I kept coming back to it however so I guess it seemed important to me to throw in my tuppence worth. I wish to make it crystal clear that I am not making any criticism of anything anyone has written and if any feel that way, it was with absolutely no intent on my part.
I have Parkinson’s, diagnosed 12 years ago. I have also worked in the care sector and am under no illusions re the carers lot when the person has Parkinson’s but particularly where dementia or other behaviour changes occur. In my experience most carers willingly take on this role and manage well in the early days when symptoms aren’t too bad. What is frequently underestimated is the impact on carer’s as the Parkinson’s progresses and which your graphic descriptions all too clearly show.
I do however feel I must make it clear that those of us with Parkinson’s also carry a heavy load, often from virtually the point of diagnosis. I live alone but do not want my family to be my carer as my Parkinson’s develops. I have taken what steps I can to put my affairs in order so that this is clear but am acutely aware this may not be enough. Perhaps I will be successful in my family not being my day to day carers but despite my best efforts, they will probably be involved in some of the decisions around my care especially if I develop a dementia or some challenging behaviour. I know only that my Parkinson’s will progress. I don’t know how or when but unless there is a breakthrough in the research which substantially changes the options I face, that is my reality.
It is not an easy thing to live with as you can imagine. All I can do is get on with life as best I can and hope I’ve done enough to protect my family and not be a burden to them.
The forum is there for us all and you are entirely right to honestly post what you are going through as carers. The person you care for may have changed out of all recognition, they may be making life unbelievably difficult, you may well feel angry, frustrated, desperate, exhausted and a hundred other emotions and maybe they do no longer understand the price you pay. That’s not to say they never did. I suspect most people with Parkinson’s would prefer it were otherwise but it is not in our gift to give.
People continue to be carers for all manner of reasons, financial, practical, duty, fatigue (makes decision making difficult) etc., and whatever the reasons that’s fine. The fact remains however that there is no law that says a family member should take on the carer role and it may be hard and complicated to change that but you do have a choice about whether you continue in that role or not. It’s a choice not open to those of us with Parkinson’s.
There are no winners.
Tot