‘Caring is literally thankless’ I am so sorry about that.
I live alone but physically close to my youngest son. His wife’s mother hates me for the problems she fears I will one day inflict on her daughter. I do not want to destroy my son’s marriage - he has four children, the eldest is now thirteen. The children have never heard the word Parkinsons, I am just their wierd, always tired , embarrassing Granny. Recently I was on the bus coming home from hospital visit and my grandson got on with some friends, He pretended not to see me. I can’t deal with any of this and I lie about seeing them and what we do.
Hello Mosie
Ever since I read your post I have been wondering how to reply. I have tried several times but nothing sounded right. Then it came to me, your post just made feel incredibly sad.
Here we are in 2023, almost a quarter of the way through the 21st century, a supposedly sophisticated and largely well educated people with information available to us in seconds, we know our rights, are increasingly sensitive to issues of diversity, cultural differences and equality and our knowledge of our world in just about any sphere you can imagine is truly incredible. We’ve even been able to put a man on the moon - which I remember my mum saying at the time of the first moon landing in 1969, she didn’t expect to see in her lifetime. Every year there is a raise awareness campaign, there may be an item on local media from time to time, acknowledging the efforts of a local fundraiser for example and there is an increasing amount of media coverage as a number of famous faces speak out about their own diagnosis - although this does sometimes make me wonder if it is not at times seen as a ‘celebrity condition’ which draws public sympathy or is it perhaps pity… Yet despite all that and probably many more things if we stop to think about it, Joe Public remains largely ignorant of Parkinson’s.
I don’t have any magic answers. It would be easy to be critical of the way your family have chosen to react to your Parkinson’s, leaving you devastated and your grandchildren having no idea about what you are going through. From a personal perspective I have to say I don’t agree with the stand they appear to have taken but, as I have said many times on the forum there is no right or wrong way to manage Parkinson’s and if this is their way I have to respect that. It has made me think about my own way of handling my Parkinson’s. As some of you will be aware I have always been open about my diagnosis, I have never minded talking about it and made it clear to family and friends that I didn’t want it to be the central part of the relationship I have with any of them. They accept this but I have to acknowledge that my driver is the need to stay positive, that is very important to me. It’s not a positivity that doesn’t see any pitfalls in this approach, I am honest about what I am facing and am well aware this approach may not hold true for ever and a day but for now, and as long as it does last, staying positive will be the main tool I use. This has had unexpected consequences for me, my family and friends take their lead from me but I know they don’t find it easy, especially when I use black humour to make a joke about my future; they don’t like me talking ‘like that.’ Here on the forum I am often described as ‘inspirational’ because of my positive approach; a phrase that I sometimes struggle with as it’s such a big word and is certainly not how I see myself. To me my positive approach is simply the right way for me to manage my Parkinson’s which is no different to what I tell everyone.
It was heartbreaking to read your post Mosie and I suspect your fear of making matters worse will prevent you from trying to suggest things could be different if they were prepared to have a grown-up discussion about your Parkinson’s, what it means to everyone and, importantly, how to broach the subject with your grandchildren. I do sometimes suggest that you write a letter writing down everything you would like to say but are not able to for whatever reason. In writing a letter you can take the time to get the words right, to make sure it says what you want it to say and to prevent too much emotion creeping in that can detract from what you are trying to achieve. You then give them the letter and leave it to them to read and which in turn may open discussion. It can be a very powerful tool and one you might like to try at some point.
As to the wider issue of raising awareness maybe someday there will come a time when Joe Public may, just may, think neurological condition before they think drunkard or similar. In the meantime all we can do is keep plugging away in the hope that some of what we say does stay with them; we can then perhaps start to build up a strong foundation for open discussion and be that much nearer to Parkinson’s being accepted for and of itself. The day when it is no longer effectively a taboo subject.
Tot
