what are the benefits of support groups?
A page in the diary ""
Written by suew 22. May 2008 12:51 AM
This is from an email I sent to a friend who is a veteran and asked how I feel about support groups.
The fellow feeling that you have with other veterans who have been in the same place is similar to how I feel about another carer. It doesn't mean that we have identical experiences, their strokee/dementia sufferer might be very different to mine, but we have common emotional responses, struggles, frustrations etc. We also share the fears, that the "next event" might make matters more difficult, that there will come a time when we can't cope, that we will eventually have to relinquish the care because we can't keep it up etc.
I can also apply what I have learned about Ray's strokes to other survivors too as I talk to them about what has been happening to Ray. He doesn't talk about it of course, being Ray. He has the Scallywags group, with the lunch he attends on Fridays. They mostly tell jokes rather than converse but there is a comradeship among them that is balm to his soul I suspect. He and I both benefit from attending the craft group too as that makes us feel accepted.
In the dementia support group I go to 1st and 3rd Fridays as I am able to, we have half an hour or more of imput from the mentor who is a clinician specialising in dementia. He has had eons of experience so can deal with and give us advice on a lot of different situations. He also acts as consulant to some of the nursing homes dealing with dementia. Got a "situation"? he is the one to call.
In the support group there are people who are currently caring for someone with alzheimers, dementia etc (like I am with Ray) and carers who's dear one has already been placed in a facility (like Mum) and also "graduate carers" who's person they cared for has died. I believe they are freer to speak about what happened whereas to us the situation is still fluid.
Some of those who I once thought of as friends often can't cope. I guess it is a case of "that could be me or my husband, don't let's go there" for some of them, for some it is "I want to remember him the way he was" (what rot!) maybe others were not really friends, just acquaintances, former colleagues, fair weather friends, all in that catergory have just "moved on" leaving us behind. That leaves well-wishers, those who phone, email etc. They are good to have around but still leave me with that lonely feeling. And then there are that handful of people who actually come here to visit us still. I feel such a burden lift when someone comes in the door. And those rare people who invite us to visit them, have lunch out with them etc. They are the real champions as Ray's behaviour can be challenging at mealtimes sometimes.
We are fortunate to still be able to do some of the things we used to do like attend Lions, Apex40 occassionally and church regularly as once we drop out of those activities our world will implode. But then we will still have the email friends and those in cyberspace like the Strokenet and Dementianet friends so I guess there will still be a community for me at least to operate in.
It worries me that little by little this will all change. I just hope that as the changes come I can cope with them.