stone walls
" Stone walls do not a prison make,
Nor four grey walls a cell"
~~Author unknown~~
I've been thinking, well that was what I do in the night when I don't sleep. I've been thinking about my life without Ray. He is still in hospital and will be for another week. AAARRRGGGH!! How long will this continue? Anyway I have been thinking about what I have been doing for the past six weeks and think mostly I have been waiting, waiting for Ray to come home, waiting for people to ring me back, waiting until it is time to go down and visit him.
Ray has been home with me for seven and a half years. He came home in September 1999 after 4 1/2 months in hospital after having two major strokes four weeks apart. I spent every day just about with him in hospital, rehab etc so that I could be his cheerleader and ensure that I knew exactly what was going on all the time. This time I have had a few days off as boredom sets in very easily for him, he gets tired very quickly and I think he feels he is better alone a lot of the time. That is a slow change that has happened over the seven years, partly because he needs to have a lot of quiet time to heal and partly now because of the dementia.
This leaves me with a lot of time on my hands which I use doing handicrafts of various kinds, coming here to Strokenet and doing housework and whatever else needs my attention around the house. I thought that while Ray was in hospital I would feel freer but it doesn't seem to have worked out like that, I think because he is always hovering at the back of my mind. It is impossible to recapture that care-free pre-stroke lightheartedness I was once famous for.
In our lives prior to Ray's major strokes some of my friends thought that I was a bit of a clown. I always treated life as a bit of a joke. I could always see the bright side of life. For some people I was "Susie Sunshine" and being thought of as "religious" as well they found me a bit hard to take. I guess the years of caregiving have whacked that out of me. I still have a sense of humour but it is more basic now, the flights of fancy rarely happen. Even without Ray alongside this seems to be the case.
I think I've built myself a prison cell. It is a large roomy comfy one but at best that is what it is. I have freedom of a kind yet I don't know how to use it. I think that is the case with some of the survivors here as well as some of the caregivers I have met in other support groups. They too have a large roomy prison cell called "home". They all spend a good proportion of their lives in the caregiving role and use some of their downtime wistfully thinking of all those things they could just do if they were free but don't know how to unlock the door and get out of there.
I am going to see if I can get some counselling on this issue. Ray will be home next week and my life will resume the caregiver role. I may or may not get further help, I may or may not get some respite. I may or may not be able to resume some sort of life outside of the caregiving role.
This is not supposed to be a down-beat, depressing idea. This is supposed to motivate me to go back a step and look at the life I live as a caregiver and see if I can improve on that. Please don't say "never mind, things will get better" I am sure they will. I know it is hard sometimes to see what is before you and not be depressed but life is always a challenge. What we make of it is really up to us.
5 Comments
Recommended Comments