The Carer's Meeting

Despite knowing several people in the HD Community I have, as yet, not really met that many people that live within 'popping over for a coffee' distance and this is something that I would like.  Our 'local' branch meet a couple of times a year but those meetings are held over an hour away and not always practical to attend.  We did attend a branch meeting a couple of years ago.  This was soon after Mr W was diagnosed.  I was still at the 'emotional wreck' stage of dealing with everything.  I was nervous to say the least.  I was holding up OK, and then a lady with quite severe symptoms arrived with her husband.  I couldn't deal with it and had to leave the room for a while.  Prior to this, I had only really seen HD on the Internet and had not witnessed someone so poorly.  I felt so ashamed to have to leave the room and hoped that I did not upset the couple.  Since then I have met other people with severe symptoms and not been so affected but I haven't been brave enough for a branch meeting again! 

So going to a Carers meeting (set up by the lovely Helen Santini from the HDA) seemed a great idea.  People to chat with, who's partners, would all be at a similar stage to Mr W...we could share stories and ideas. I would come home uplifted and revitalised.  Ha!  why did I kid myself?  Despite us all being affected by HD in one way or another of course everyone is at different stages.  Around the room, these lovely people, told me heartbreaking stories.   The mother who is caring for both her son and husband whilst dealing with breast cancer herself.  The lady whose son came home from University to be looked after.  The woman whose days are dictated by her husbands moods. 

Im not saying it was not a helpful meeting but I came away with a heavy heart.  I felt grateful that Mr W does not, as yet, have some of these problems but there is no pleasure to be found in hearing about others lives being worse than yours.  I am a doer.  I want to solve all their problems.  I want to make it all go away.  I want to erase some of what I heard as I will now worry that Mr W will have some of those problems. 

There is no easy answer to how to get the right support.  Perhaps when I reach the 'acceptance' stage (think I'm still waiting...) I will cope better ... who knows.  In the meantime I think I will try the 'branch' route again.  Maybe attending social events that raise money will help my desire to 'do' something and help me feel that I am helping.