Support groups

[CateT]

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?

Cate

[SuzieQ]

Hi Cate

I totally agree with your comments and my first experience of the Coventry support group had the same effect on me. I decided not to go to another meeting as I found it too distressing to see others there who were much further advanced than my hubby. At that meeting there was a carer whose partner had only been diagnosed very recently (he was also there) and to witness her distress and upset on hearing and witnessing first hand other sufferers much further into the illness was truly upsetting. I know how difficult it is to take part in lots of activities, meetings, etc without having your loved one with you and it isn't always possible to get appropriate people to stay with them for just a few hours.

I agree that some carers and also sufferers are more able to deal with what might be discussed at a support group, but I do feel that it might help if it could be made clear that certain aspects during the discussion might not be appropriate for everyone.

I have no criticism whatsoever of any aspect of the PSPA without whose help and support we would all struggle far more than we already do with this cruel illness. Like you, I should be very interested to hear feedback from others.

Good luck to everyone using this site and thank you to everyone involved in helping us to understand all the intricacies of PSP.

Love ..................SuzieQ xx

[jennifer-nind]

Hi Cate

I am so sorry to hear about your experience at the Coventry Support Group.

I co-run the Brentwood Support Group. Liz is a Parkinson Nurse Practitioner and I am a former carer. We have a mixed group of people attending our meetings, patients with both PSP and CBD along with family members, carers and friends. We have guest speakers, and our meetings are very informal and welcoming. If any of our carers or family members want to chat in depth about how the illness progresses, we are happy to chat with them quietly away from any patient who may become distressed about how the illness progresses and takes hold. We welcome all to our meeting and do our best to include everyone and encourage input. We run our meetings along the lines that it is a support group for patients, carers, family members, etc., and welcome any suggestions and input as to how they would like the meetings run.

It is difficult to get a balance at these support groups and I wish that there had been a support group in place when my husband was alive!!!!

Our group must be doing something right as we have 'our regulars' who attend and get a lot out of our group.

Love and best wishes

Jenni xxxx

[Kathy]

Well said!! I went to the London Group for the first time recently and there was a lady there with PSP - she had a friend with her and neither of them said a thing throughout the meeting other than to introduce themselves.

I didn't really get much from the meeting, other than a telephone number of a lovely lady who lives not far from me and whose husband passed away fairly recently. The meeting felt fairly "disorganised" with people interrupting and talking over each other all the time. It also turned into a public derision of the NHS with 2 fairly vocal people dominating the proceedings with comments about how badly their loved one was being treated. I think, if I was the lady with PSP I'd have turned tail and run!!

Beleive me, I know how frustrating and difficult it is dealing with PSP and understand how important it is to allow people to vent their frustrations, I'm just not sure the "support" group is the right place.

Good point, well made Cate!

love Kathy x

[SheilaN]

I was sorry to read of your disappointing experience and can understand how you and your parents felt and why your mum didn't go to the second meeting. My husband and I went to our first meeting together. There was only one other carer there, other than the PSP nurse who is great. The carer used the time to offload all her frustrations and anger at her husband (not present), his behaviour and how much she hated being his carer.It was clear from what she was saying that her husband was much further down the line than mine but I also wondered how much of the picture mine was absorbing.By the time the second meeting came around he was no longer mobile and unable to attend. As it happened I was the only person who turned up so had the nurse and her advice and support to myself.

Even if a PSP sufferer can no longer verbalise their thoughts and feelings there is every chance that they understand what is going on and I believe they should be protected from hearing about what the future holds in store for them. Although my husband obviously knows he can no longer walk, is doubly incontinent, can hardly speak, there seems no point in letting him know that he might also lose his sight and ability to swallow. Even if he was cognitively 100% intact and asked me I would be very circumspect in my reply. They go through enough without the aded anxiety of what might not happen. Sorry if this sounds like a bit of a rant but I think what you and your family experienced sounds very insensitive. Rant over!!!!

I applaud the PSPA for setting up all the nationwide support groups which are a lifeline for some carers. I admire hugely the volunteers who run them but a little discretion and sensitivity goes a long way.

Take care.

SheilaN

[CateT]

Thanks for all the comments. I am in no way being critical of the support groups. They are wonderful things and so desperately needed for carers to offload and share advice. Our Camberley support group is run by two wonderful women, but I still think that in my experience the conversation is dominated by carers (for obvious reasons due to the nature of PSP) and those with PSP may feel objectified and hear a lot about how difficult they may make life for their carers in the future.

The only solution I can think is to separate the groups but then I guess the ones for people with PSP may be very poorly attended. I guess the thing to recognise is that carers and sufferers may want very different things from the meetings. Carers are under tremendous pressure and are essentially grieving for the person they used to know and sufferers may want to share the difficulties which they face day to day and know that they are not alone.

I just don't have the answers but it sounds like you all had similar experiences to our one.