I confess that I am an angry and guilty and tired caregiver. Now that it’s September, I realize it has been a year without a break. Not even a day. Not more than a few hours. Of course, that is even more true for him!
I watch him pulling into himself. He doesn’t make eye contact very often now, or smile his little smirky grin, or make jokes. It is harder to care for him when I don’t feel him caring for me. Maybe he’s angry and tired, too.
He worries about inconveniencing the kids, or inconveniencing his brother, but he never seems to worry about inconveniencing me. Even though I know it’s not true, it makes me angry.
He doesn’t want any outside help, doesn’t want a nurse’s aide from hospice to shower him, doesn’t want his brother to see him naked. I understand it’s his sense of dignity. That means I have to do all the “private” things. I get worn out. Then I get angry at him for “doing” this to me. I feel guilty for feeling angry. So I am an angry and guilty and tired caregiver.
I’ve read that it takes a community to care for someone who is dying. I have finally allowed our friends into the circle of care. A wonderful neighbor organized a “Care Calendar” and I’m amazed to see all the people who have signed up to bring us food. It makes this journey so much less lonely to feel their love in this process.
I wonder what to do next. I know I need to take care of myself. But my body has vibrated with his needs for so long, and so much more these last few weeks. I’m not sure how to separate myself.
I told him how tired I was, how I didn’t think I could do it all myself anymore. He said “do what you have to do.” I told him that wasn’t fair – he was opting out. “Okay, fine. I’ll just call Waste Management and put you out at the curb on recyling day. Course we’ll need to have them bring a dumpster because you won’t fit in the little blue recyling tubs.” That got a chuckle out of him.
I know I wouldn’t want to be cared for by strangers. I wouldn’t want to be anywhere but my home. But I think I would have given up long ago if I were facing what he has faced. I’m not sure I could have managed all the incapacities and indignities he seems to be managing with good grace. I would have wanted out (I think). Then again, in the early stages of his disease he used to say “if I get to that stage, shoot me.”
He has always had an amazingly tolerant nature, so different than mine. I guess he had to be that way, being a contractor. He always needed to please the customer, not himself, so he learned to put up with a lot. He’s always been naturally easygoing anyway, naturally optimistic – often unrealistically optimistic.
Maybe his optimism makes this process of dying easier for him.
What will make it easier for me? I try to stay in the present, in the moment, but then how do I plan if I can’t manage tomorrow? How do I let go of the anger? How do I let go of the guilt?