The reluctant caregiver

Image: The reluctant caregiver

Today's Caregiver Tip Tuesday post was we written by Paula Span and taken from The New York Times.

Now and then, I refer to the people that caregivers tend to as "loved ones." And whenever I do, a woman in Southern California tells me, I set her teeth on edge.

She visits her mother-in-law, runs errands, helps with the paperwork — all tasks she has shouldered with a grim sense of duty. She doesn't have much affection for this increasingly frail 90 something or enjoy her company; her efforts bring no emotional reward. Her husband, an only child, feels nearly as detached. His mother wasn't abusive, a completely different scenario, but they were never very close.

Ms. A., as I'll call her because her mother-in-law reads The Times on her computer, feels miserable about this. "She says she appreciates us, she's counting on us. She thanks us," Ms. A. said of her non-loved one. "It makes me feel worse, because I feel guilty."

She has performed many services for her mother-in-law, who lives in a retirement community, "but I really didn't want to. I know how grudging it was."

Call her the Reluctant Caregiver. She and her husband didn't invite his parents to follow them to the small city where they settled to take jobs. The elders did anyway, and as long as they stayed healthy and active, both couples maintained their own lives. Now that her mother-in-law is widowed and needy, Ms. A feels trapped.

Ashamed, too. She knows lots of adult children work much harder at caregiving yet see it as a privilege. For her, it is mere drudgery. "I don't feel there's anybody I can say that to," she told me — except a friend in Phoenix and, anonymously, to us.

The friend, therapist Randy Weiss, has served as both a reluctant caregiver to her mother, who died very recently at 86, and a willing caregiver to her childless aunt, living in an assisted living dementia unit at 82. Spending time with each of them made Ms. Weiss conscious of the distinction.

Her visits involved many of the same activities, "but it feels very different," she said. "I feel the appreciation from my aunt, even if she's much less able to verbalize it." A cherished confidante since adolescence, her aunt breaks into smiles when Ms. Weiss arrives and exclaims over every small gift, even a doughnut. She worked in the music industry for decades and, despite her memory loss, happily sings along with the jazz CDs Ms. Weiss brings.

Because she had no such connection with her mother, whom Ms. Weiss described as distant and critical, "it's harder to do what I have to do," she said. (We spoke before her mother's death.) "One is an obligation I fulfill out of duty. One is done with love."

Unlike her friend Ms. A, "I don't feel guilty that I don't feel warmly towards my mother," Ms. Weiss said. "I've made my peace."

Let's acknowledge that at times almost every caregiver knows exhaustion, anger and resentment. But to me, reluctant caregivers probably deserve more credit than most. They are not getting any of the good stuff back, no warmth or laughter, little tenderness, sometimes not even gratitude.

Yet they are doing this tough work anyway, usually because no one else can or will. Maybe an early death or a divorce means that the person who would ordinarily have provided care can't. Or maybe the reluctant caregiver is simply the one who can't walk away.

"It's important to acknowledge that every relationship doesn't come from 'The Cosby Show,'" said Barbara Moscowitz when I called to ask her about reluctance. Ms. Moscowitz, a senior geriatric social worker at Massachusetts General Hospital, has heard many such tales from caregivers in her clinical practice and support groups.

"We need to allow people to be reluctant," she said. "It means they're dutiful; they're responsible. Those are admirable qualities."

Yet, she recognizes, "they feel oppressed by the platitudes. 'Your mother is so lucky to have you!'" Such praise just makes people like Ms. A. squirm.

Ms. Moscowitz also worries about reluctant caregivers, and urges them to find support groups where they can say the supposedly unsay-able, and to sign up early for community services — hotlines, senior centers, day programs, meals on wheels — that can help lighten the load.

"Caregiving only goes one way – it gets harder, more complex," she said. "Support groups and community resources are like having a first aid kit. It's going to feel like even more of a burden, and you need to be armed."

I wonder, too, if reluctant caregivers have a romanticized view of what the task is like for everyone else. Elder care can be a wonderful experience, satisfying and meaningful, but guilt and resentment are also standard parts of the job description, at least occasionally.

For a reluctant caregiver, "the satisfaction is, you haven't turned your back," Ms. Moscowitz said. "You can take pride in that."

Paula Span is the author of "When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions."