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It was time to stop working, to emerge from my home office into Mom’s world, and I was really frustrated.
I was struggling with a new book idea. No matter what I tried, nothing seemed right. It left me in a really bad mood. Although I knew the struggle was just part of the process, having to stop right then to look after Mom seemed like the final straw.
I’ve been taking care of my mother, who is 93, for a year and a half now. Mom has vascular dementia and lives in my home. I’d thought we were doing pretty well. I had no idea I was about to experience an episode of caregiver burnout.
In the living room, Mom stood indecisively between the couch and the sliding glass doors. She had a sweater and a paperback clenched under one arm, the newspaper and a New Yorker under the other, her purse, a glass of water, a banana and a hardcover book gathered against her belly in her hands. Although the day was already warm, she was wearing an old cardigan, one that must have escaped my hideous-clothing purge. Her head was swinging from one side to the other as she looked alternately at the whiteboard inscribed with the day’s agenda and the clock on the mantelpiece.
She reminded me suddenly of the polar bear in the Central Park Zoo, back in the old days before the big renovation. The yellowing giant used to stand there in front of the bars of his tiny concrete cage, swaying from foot to foot, swinging his restless head from side to side, his forehead matted into furrows.
“Now,” Mom said the moment she saw me, “it’s 11:24. Is it time for us to go?”
“Mom, look at the board,” I said, the explosion of anger inside my body leaving me rigid. I hate being rushed, and I thought: I really don’t know if I can stand this anymore.
“Well, all right,” said Mom, looking at the board. “Oh yes, leaving at 11:45. Is that enough time to get there?”
“Yes, it is,” I answered tightly, brushing past her.
“O.K., well I’m all ready to go whenever you say.” Mom sat back down on the couch, still holding her extra sweater, banana, purse, glass of water and reading materials.
In the kitchen by myself, I gripped the edge of the counter, feeling like a bad person. I thought: I’m just having a bad day.
But the day didn’t get better, nor did the next. Everything Mom did irritated me. When she raved about thebeautiful trees, I hated her hyperbole. When she shrank from someone’s touch, I hated her coldness. When she marveled over obese people at the grocery store, I was enraged by her superciliousness. Her own son had died from complications due to obesity. “Ma,” I said roughly, “do you remember my brother?”
I felt battered by qualities in her that had hurt me when I was young. But these were harms from which I had recovered years ago. I knew my mother loved me and would give me her last nickel, the clothes off her body, her last breath. She would lay down her life for me, as I would for my kids, I knew it.
So why did I hate her?
Everybody talks about caregiver burnout, how you have to make time for yourself or you won’t be able to go on. But nobody talks about how burnout creeps up on you, how it starts to happen before you even realize it. Burnout can be hard to recognize.
At first, being Mom’s caregiver was difficult but exciting, with lots of highs and lows. I was happy to buy her new clothes and to steal away the old icky ones that were many sizes too big. I was thrilled to demonstrate to Mom that once her pure white hair was washed and styled, she was not (as she claimed) bald. She looked absolutely beautiful.
In the beginning, I also fell easily into anger. When Mom accused my son and his friends of stealing her car, which actually was parked in the driveway, I was insulted and angry, not reassuring. Only later, after Mom’s repeated panics about losing her car, did I find my compassion. The car, which she no longer drives, symbolizes her independence. And in truth her independence is being stolen as she ages, bit by bit.
In due course, the drama evened out. We got the basics in place and developed a mutually acceptable routine. Every day, I take time for myself to write, and I give time to Mom to go out and do things. We rarely get angry, and we have a lot of laughs. Mom seems happy. I thought I was on an even keel.
So why all of a sudden did I feel as if I didn’t love my mother, that I hated taking care of her?
“What you’re describing is really a matter of resentment,” said Barry J. Jacobs, psychologist and author of “The Emotional Survival Guide for Caregivers.” “Sometimes caregivers have a difficult time distinguishing between resenting the caregiving and resenting the person. It’s a clear sign of burnout.”
Caregiver burnout often manifests as resentment, anxiety, depression, sleep problems or waking up with a feeling of dread. Many caretakers, Dr. Jacobs added, don’t realize they are burning out until they are “very symptomatic.”
“Often people make a commitment to caregiving as a matter of course,” said Dr. Jacobs. “It’s about family. But they don’t know what they’re signing up for, or how long it will last. At first, caregivers are able to set aside other aspirations, hobbies and friendships to focus on caregiving. But as time goes on, that takes a greater toll.”
Like many others, I’d set aside a lot of my usual activities, things I do without Mom: long walks, going out with friends, even a full-time job. Because Mom always wants to go with me, I do almost nothing without her.
I didn’t think about burnout until a friend asked if I were still practicing meditation every morning. I had to admit I wasn’t. In fact, I couldn’t remember when I’d stopped — sometime in the past year. The very next morning, I returned to my spiritual practice. Instead of racing to my office to hammer away at my book project, I settled in with my prayers, my pillow and my silence.
And a small miracle occurred. As I emerged into the living room, I saw Mom standing on the deck outside the sliding glass doors. The oblique light rebounded off the pale boards, the faint wind ruffled the crabapple tree, and Mom’s white hair lifted, shimmering. Suddenly, she was once again beautiful to me, her diminishing form etched and attenuated by loss, and I no more than a bolder echo of her essence. I could love again.
The suddenness with which my feelings reversed after meditation helped me to recognize burnout for what it was. I didn’t hate my mother. I was spiritually and emotionally exhausted.
Dr. Jacobs listed several essentials for avoiding burnout: physical exercise, respite, replenishment and balance. “Sustainable caregiving requires a lot of self-reflection,” he said. “It requires flexibility and a real commitment to revising the plan on a regular basis.”
I’ve taken that advice to heart. Not only have I rededicated myself to my morning spiritual practice, I’ve started going out with friends in the evening — without Mom — and taking a walk alone every day. I am also putting a respite into place. Once every few weeks, a friend will stay with Mom for 24 hours while I take a break elsewhere.
The experts say that caregivers must make time for themselves, but what I realized is how important the quality of that time is. Time for oneself doesn’t mean time working alone, even when it’s work I love. It means taking time off to connect with friends, to have fun and for me, most importantly, to renew from a wellspring deeper than my own.
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