struggling without much help
A page in the diary "Sue's thoughts on life"
Written by suew Sunday, 8 August 2010 21:21
I sent the following letter to friends by email yesterday:
At the moment I am struggling as most of the emails I get are those promising me seven years bad luck if I don't pass them on, I would much rather have a short note about what you and your family are doing please. I don't know if it is just winter but I am feeling much lonelier than usual. The cold and gloomy days certainly don't help. Thank goodness winter will be over soon.
I frankly feel Ray and I have had sufficient bad luck over the past eleven years. I would now like for life to be peaceful and uneventful for a while. We went to our WAGS (stroke support) meeting today and learned of two others back in hospital with another stroke. We do not wish for that to happen to Ray. Ray has enough deficits already. He still enjoys going to the Scallywags lunch meetings once a fortnight when he is well enough to go, it is good for him to have male company.
I really struggle sometimes with the daily routine, showering Ray, changing beds because of his incontinence, the extra laundry etc. The wet winter weather has not helped. I definitely need a decent dryer inside before next winter comes. Our old one died some time back.
We still manage to have a reasonable life despite it all, just not what we would have planned for this part of our lives. It is becoming more isolating as Ray struggles with going out at night, with his perception problems shadows and dark patches can mean he doesn't see if the ground is level or not and stumbles so I mostly wheelchair him in to Lions dinners now. We have turned down invitations where we know the venue is not wheelchair accessible or there are steps and stairs, this is also contributing to our feelings of isolation.
The family must be so sick of us being unable to do the things other grandparents do, the things we thought we would be able to do too. Today at stroke support we discussed why some people fully recover from strokes and some do not, even the neurologists seem puzzled by it. It is not the amount of exercise, or determination or support, there are obviously other factors we know nothing about as yet. Of course the number of strokes Ray has had is a factor too as many have only had one.
It seems only a couple of years ago we were much more mobile, going away for weekends etc but recently Ray has had some health problems and now it is such an effort to go anywhere other than visits to the local area, shops, church and family. The Apex40 Club is going to Wiseman's Ferry for a four day holiday in September and I would love to go but trying to shower Ray in an inadequate bathroom does not sound like a "break" to me. Thank heavens for Camp Breakaway and the mini breaks they have been able to offer us.
Hope I have not upset you with my blunt approach, I do appreciate all of you and the support you give us, whether close by or far away.
Sue.
I got one reply. It referred to my email as "gloomy" and reminded me of people who are much worse off, like a friend of hers whose husband has cancer.
As we all know cancer patients and their families get a lot more support than we do especially those with a palliative care team on their side.
Just shows sending out a truthful email is NOT the way to find support.