I’ve been feeling off since we returned from vacation – in sort of suspended animation. I can’t seem to recapture my resilience.
Then the recovery of some strength and better breathing and almost back to pre-crisis (except for random episodes of weird symptoms). Then things seemed stable enough for me to manage alone with him, and to plan the vacation. Then vacation (with it’s own mini-crises). Lots of action.
Now we’re back, but where are we? Are we near the end? We’re still under hospice care.
Are we proceeding with our lives? We went to a Selby Gardens outdoor concert last Sunday and to the beach for sunset on Thursday.
I asked Larry if he thought being in hospice was a psychological disadvantage that outweighs the benefits? After all, they know nothing about his disease. They’re good with the equipment we asked for, good with sending meds, good for the CNA help. But medically they just shake their heads when I mention a weird symptom. So does being in hospice make us feel closer to death?
He said “No, all positive.”
In some ways, I just feel like I’m always waiting. Like now. Waiting for him to wake up so I can help him. Then I’ll wait for him to finish on the toilet so I can help him. Then I’ll wait for him to finish eating breakfast so I can help him with his breathing treatments. And always waiting for the next shoe to drop. I can’t wait for him to get better. I don’t want to wait for him to get worse. I can’t do anything about any of it. I’m in suspended animation.
I know, I know. I need to stay in the present. Right now I’m just finding it hard.
Just the other day I looked out a window and saw a couple doing their morning walk together. Just a simple walk. I was SO jealous!
His breathing has been gurgly recently. It’s such torture to listen to. I asked him if it bummed him out that it had gotten worse again. He shrugged and said “not really – it’s all just part of the disease.” He has such amazing equanimity.
We weighed him. He was 168 pounds. Later he joked to me. “Last time I weighed myself I was 190. I missed the 80’s and 70’s.” He takes it in stride. I see a gaunt face, a body wasting. (Although his gaunt face is actually making him look very sexy.)
I used to go at 120%. I never had time for anything. Now I have lots of time, in some ways, bits of time here and there, unknown lengths of time. It’s hard to start anything when you don’t know how much time you’ll have. Even a cup of coffee.
So here I sit. A caregiver in suspended animation. Looking for my resilience.