I have been talking to a dear friend lately just really about what is going on in our lives. This is one of my group from Grammar School who had the brain aneurysm and then a year later the glue used to fix it was recalled! Can you just imagine?
A lot of us caregivers here seem to be in transition. Maybe the season change or just changes in recovery. But the one thing I do know is unless you live this, you really have no clue. Mary Jo gave a wonderful response to a recent blog that so got me thinking.
When people suggest it is time for us to have a life, something for ourselves, they don't realize that our lives never really leave us. There is always something churning in our brains! Because it is all on us. Friends can leave the home, tend to their own issues; knowing they have back up, either husband, children or family. For a lot of us, our main support is broken. One can deal with a sick child for a day or so, rearrange work schedules. Take time off for an appointment or a day off from school to help out. But 24/7 for the rest of your life? And when friends figure this out, they are long gone.
Bruce and I are working towards no caregivers. We got great news this week that our beloved Jen will be moving back around the holidays and this fits great with the plan. Bruce is now on deck with the exercising every day, he can transfer WC to bed and back independently, he sets up Kira and our breakfasts after dinner and deals with everything independently in the morning. Projects for the winter are finding some sort of shoe he can slide into for transfer and getting his sox off safely, so he could transfer barefoot. Also toileting. Going to begin standing at the toilet to urinate. This means letting go. But others do it all the time. Again my mantra: rote, rote, rote. If we find a system that works and is safe, we do the same thing, the same exact way every single time. Transfer to the toilet and back are on the back burner for now. I may have to get an PT in from work to advise there.
But this is all in preparation for me to go to work for four hours a day. When people say you have to have a life - I honestly can't think of anything else I would be doing. And that is where Mary Jo's response hit a nerve. I could take a course - couldn't really focus - but it could be a hobby thing. I don't shop - none of us really do. Money savings. I can walk here everyday for exercise, work in my yard, housework-which I don't love to do, but do feel a wonderful sense of accomplishment when I do. And I think with most of us, having any free time is doing things in our own homes-paint, clean out, yardwork; so I am here anyway. I have a new front porch that still needs sealing. And window cleaning. People just don't understand that I don't want to go off shopping. I want and need to work on projects here.
It always sounds like making excuses, justifying. So I have stopped trying to explain. It is not that people don't care, they just don't understand the logistics. My real desire is a few hours in this house, couple of times a week, ALONE. I want to start a project here and be able to finish it without interruption. And this is where Jen will be able to help. She drives a 5 speed (our truck or car) and loves getting out and about. If you remember any of my old posts, that is what she is best at; yard sales, library, dollar store, pool, movies, plus she could always get Bruce to walk a bit. She used to take Bruce every Saturday morning to the pool. Three hours and he came home exercised, showered and ready for lunch and nap. Best money I ever spent. That is my thinking for the Spring. He won't do much here alone, but he will be safe and maybe Jen two days a week to get him out.