I attended the Camberley support group this Thursday with my father, for the second time and found it to be a wonderful resource for families and carers of people with PSP. The first time we went we took my mum, who has PSP as she was still quite mobile and wanted to go. She didn't like it as she found it quite distressing to hear stories of what may be in her future.
I know that not everyone will feel like her and that some people may want to know. Despite this, I felt very uncomfortable at the last meeting we attended without my mother as there were 2 women with PSP there. Both my father and I felt that there is perhaps a need to separate support groups. There is a need for carers to have a place where they can talk openly and share experiences from their perspective but people with PSP don't really need to hear how difficult it is for others to care for them.
I also realise that running a support group for PSP sufferers may not be a viable option as there may not be enough people and also by its nature, PSP makes it very difficult to communicate.
I do think that if the meetings are to be advertised as open to both PwPSP and carers, perhaps there could be an acknowledgement that things may be discussed which people with PSP may find distressing.
Those 2 women sat there, silently, whilst the behavioural problems of other PSP sufferers was discussed (inappropriate sexual behaviour, aggression, agitation) as well as the difficulties of caring for those much further along than they were. I don't know how they felt but I do know how my own mother felt in similar circumstances. Not once were they acknowledged.
I am absolutely not being critical of anyone or anything as carers NEED to talk, share and exchange information and those running the group were so wonderful and could not censor what was said. Plus I was one of those talking about my experience with my mother who is now very very poorly.
I just felt for the 2 women, as did my dad, and we wanted to bring it to someone's attention, but we don't know who. I'm not sure if there is a solution but perhaps a warning on the website that both carers and PwPSP are welcome to attend but that things discussed may be upsetting for sufferers.
I made a point of saying that not everyone gets everything. Perhaps this could be said at the outset of meetings - that they may hear things that may never happen to them.
Perhaps I am being over-sensitive. What do others think?