I was looking through a journal I kept two years ago. We had moved to Florida seven months earlier but were up in Massachusetts visiting friends and consulting with my husband’s neurologist about the Florida neurologist’s diagnosis of possible ALS. It wasn’t ALS, it was MSA, but regardless, the ever increasing symptoms were a heavy weight.
The caretaking increases and the fun continues to decrease. I’m tired of trying to encourage him to exercise. Tired of using my energy to try to motivate him. Tired of his “I can do it,” and then he can’t.
I’m tired of not getting to feel good about me. I’m tired of being so inactive – well, active in the sense of moving to help him but doing so little else.
Our situation won’t change for the better. I have to learn to accept rather than to fight against.
I also have to start looking at what we do by myself and make what I think are smart decisions about how to make things easier for both of us.
Smart decisions. Simplify, Think how to make my life easier. then also give myself respite times during the day. A run. Reading. Painting.
Also I should wait until he asks for help rather than jumping to do things for him, both so we see what he needs and so I do less.
When people ask how we are, I tell them all the problems, because things keep getting worse.
But if that’s the bottom line, perhaps I’m missing something. This is our journey, my journey. What is there to learn? Spiritual presence? Acceptance? I’ve been fighting against the disease, against my part of the journey.
What if I go with the flow of the river, ride the rapids as best I can, find the quiet pools and revel in them?
As I read this now, I realize I’m actually in a better place now. I am more accepting, more able to find the quiet pools in the river between the rapids.