finding support
I have just got back from the WAGS (working aged group for stroke) meeting. Ray and I joined this group five years ago and they have provided fantastic support, for Ray at the Scallywags (men's) group meetings and for me at Carer's dinners and the annual women's weekend. Without fail the convener of the Scallywags group asks me for a report on Ray that he can take to the group. He joked that they always look at the plate with pieces of cake left over and say: "We should take this to good old Ray". I often scolded him for eating all the leftovers - and him a diabetic! It is nice that they remember him with affection.
I have always had such a good time at the Women's Weekends. No group of women could have been better therapy than the ladies of this group have been over the past few years. We have laughed and cried together, told our stories, asked our questions and been better than sisters. But now I feel as if I have moved on to a new area of the stroke journey and they as yet are not able to relate to me there. They've all asked me to go to the weekend as usual in November but as yet I am not sure I will still fit in.
I also belonged to a Dementia Support group but I feel the same there, they are all still dealing with hands-on caregiving and I am not. I fit in better at the nursing home support group at Mum's facility as we are all supervising the care of someone in a nursing home and coping day to day with rebuilding our own lives around the constant visits and the call-outs from the home. I can relate to both those with a Mum or Dad in care, and those who have their spouse in care as I am dealing with both of those events.
But people do not fit neatly into pigeon holes and so I find that wherever I go I can help and support someone. Today one of the ladies told me she is trying to support her Mum as her Mum has to find a nursing home that will accept her sister-in-law who has dementia and can no longer cope with that at home. This woman knew my Mum was in care for the same reason and we discussed some options. Support is where you find it, hopefully among the people who have had a similar experience but are further down the track than you are and so more focussed on the big picture.
Today I handed in my "Carer of the Year" trophy. I have a small plaque that is permanently mine so I will always remember that I was awarded this honour not just for what I do/did for Ray but for what I do in the community and on here. A lot of people are amazed that I have been a chat host on an American stroke support site for six years now. We all tend to see the world in a very narrow focus so we see our family, our street, our group or our community but often fail to see the people who need help and support beyond that circle. There are so many in a similar situation, and the need for support is world-wide not just a local focussed need.
I also belong to a local stroke support group online and have been urging them to join this group also as it has many more members, more daily activities and lot of good current information on the treatment of strokes that I have found so useful. And of course, as has been my case,there are friends to be made who are willing to share our troubles and woes and our joys as well. I think it is hard enough for people to reach out anywhere (thinking of all the lurkers who read but never post comments) but we have to be grown ups rather than children who have a fear of the stranger. I have always like the saying : "Strangers are friends I have not yet met."
Just lately I am more aware of how little I know about anything. Today our guest speaker from within our group was a lady who had her first stroke at 26. She had more than one AVM and the surgeon then proceeded to surgically fix another two, one being considered too dangerous to operate on. That woman has managed to hold down a full-time job, get married and with her husband, travel extensively. We were amazed at her adventures being one-handed in a two-handed world. She has a delightful sense of humour and I think that helps a lot. She has recently retired at 55 fearing she was slowing down and not giving her employer value for money. But because she thinks she still has much to contribute to life she is now doing volunteering work instead. Her story really amazed me, she has such an attitude of gratitude.
I am unable to visit Ray for a few days as I have just had a tummy bug and so have to stay away from the nursing home for 48 hours after the symptoms go lest I infect anyone there. Typically of course the sun is now shining brightly so I could have taken Ray out in the sun. He still has the chest infection but it is no longer pneumonia so a nuisance rather than a life-threatening illness. Sadly he has been in the long wheel-based comfy chair again the past week, not the wheelchair he can manage to move himself so it looks like his life will be more restricted now. And for me it looks as if his days of sitting in the sun in the park are out of range now with me pushing him there in the chair as the chairs are bulky and very difficult to manoevre being heavier and more awkward than an ordinary wheelchair.
So, if you feel you need support, look around you, there are a lot of others on here who live in similar circumstances to yourself, dealing with the same problems, feeling the same pain and are waiting for someone else to say "let's be friends". As we all know the friends we once had are gone, children and other family members tire of us and yet life must go on.
Sue.
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