It’s all too easy to lose yourself to caregiving. It’s an insidious process.
The needs and responsibilities mount up over time, almost without your noticing. You start giving a little help here, a little help there. Maybe you hardly notice.
I didn’t think of myself as a caregiver two or three years ago when we moved down here, although I was. I made the doctors appointments, helped with buttons, and socks, and cutting food, that’s all, not much.
As his symptoms increased, so, too, did my caregiver tasks. Each one takes time, energy, some little, some big. I didn’t really notice that as you add something to your day something else falls away.
The other day I asked Larry what would he say to caregivers. “You don’t realize how hard it is,” he said.
“You mean I should tell other caregivers they don’t realize how hard it is?” I asked.
“No. YOU don’t realized how hard it is,” he said, looking at me.
Sometimes it isn’t very hard. Like now. I’m sitting outside with my feet up on a cushion, and a hot cup of coffee beside me.
Course, I’m listening for him.
I do take care of myself, although I make his doctors’ appointments first. But I’ve had my annual physical, and seen the dentist and all the other stuff you have to do to know you are healthy. I shouldn’t gloss over this because health is a real caregiver risk. The statistics are pretty awful about how many caregivers die before the person they are caring for die. Stress takes its toll.
It’s not just the tasks, the time that caregiving takes, even the physical strength to get this 200 pound, 6’2″ tall man from chair to walker to wheelchair to bed. It’s the fact that I want to make him happy. He has limited time. I want him to be happy, want him to have his choices.
I’m always asking what do you want to do? What do you want to eat? Where do you want to go? What do you want to watch on TV?
In the process I start to forget to think about what I want. Or what I need. And then I start to not even know what I want.
Sometimes I wake up in the morning and get up knowing I’ll have an hour to myself before he wakes up. I don’t even know what to do with myself. There’s always chores, of course. But what do I WANT to do???
When we first had someone come to stay with him for 3 hours a week so I could get out to do things, I did errands. Got groceries, my bone density test. Those things are important but when I ran out of errands I didn’t know what to do.
It’s only recently that I’ve started to say no to him, in little and big ways, when I think it will take too much out of me. I realize I have to conserve my energy.
The other night I had already eaten and the kitchen was clean. He’d eaten early and so now he was hungry. I asked what he wanted. “A burger,” he suggested. “Grilled cheese?” No I’m not making a burger or grilled cheese. I don’t want to wash pans. I’m tired. We settled on toasted cheese. No pans. I felt a sudden wash of guilt.
The biggest request I said no to was spending time up in Massachusetts, where we came from two and a half years ago. We have important family and friends there. I agonized night after sleepless night. We’d gone the last two summers and it was exhausting and his symptoms all increased. And his needs were less, then.
I considered one way, then another, for too many sleepless hours.
Driving, flying. Flying and having someone drive our car. What to do with the power wheelchair. How to find the appropriate accommodations. I went back and forth. Go, not go. A month. No! Maybe a week in a handicap accessible timeshare. Flying. Borrowing a wheelchair.
It didn’t help when I read one of the online discussion groups answering someone’s question about taking their loved one on a trip. GO, go, go, many of the answers said. Don’t deprive them of this. You can make it happen. There was nothing about the emotional and physical cost to the caregiver.
Finally we decided not to go. He didn’t want to go without his power chair. He wanted his comfort, he said.
I realize as I write this, that it’s not a good example of me saying no. He was the one who finally said no. Well, I guess I said no to driving up the 1500 miles in the wheelchair van. Darn. I knew right from the start that it would be too much for me no matter how we went. But I didn’t say no.
It’s hard to remember that I matter, too.