Caring About Caregivers

Last month, while we celebrated my mother-in-law’s 90^th birthday at her board and care home, I spent a long time talking to Carole, the daughter-in-law of another resident, Brenda. Before moving into the home a year ago, Brenda had lived with her son and Carole, and the couple’s two pre-teen kids. The arrangement lasted five years, during which, Brenda’s mental capacity declined and Carole’s worries soared.

At first, Carole had the standard fears about accidents and fires. She feared that Brenda would forget to turn off a burner or get lost. That Brenda was still driving was a major source of dread. Once, when Brenda didn’t get home when she was supposed to, Carole found her in her car, parked on a side street, in tears; she’d been blinded by the setting sun and panicked. Another time, Brenda drove to Reno. When the family came to get her, they found her in a casino, waving a fistful of cash. Carole breathed a sigh of relief when the DMV called Brenda in for a driving test, but her relief was short-lived; they renewed Brenda’s license for another two years. Carole sat through her kids’ soccer games worrying whether she was giving them the attention they deserved. She worried that she had started telling Brenda what to do instead of asking her to do things, and that her patience was waning. Carole ended her litany of worries with one that worried me—she worried that if she ever had a momentary lapse that resulted in harm to Brenda, she’d be accused of elder abuse.

I hate to think that caregivers see our network as a threat rather than a resource. I admire people who open their homes and lives to elderly members and have been deeply moved by books like For Sasha with Love and The 36-Hour Day, which chronicle the experiences of caregivers. My favorite is the touching and inspiring Elegy for Iris, written about Iris Murdock by her literary critic husband of 40 years, John Bayley. In it, he describes his tender love for her that is disrupted by fits of rage when the unrelenting demands of caregiving and the cruelties of dementia overwhelm him.

Caregivers don’t just worry about being accused of abuse. According to a 1995 study by Karl Pillemer and Jill Suiter, 20% of dementia caregivers fear they’ll actually become violent toward those they care for, a rate that jumps to 57% if the care receiver has been violent toward them. A shared living situation and disruptive behaviors by care recipients also increase caregivers’ fears. Pillemer and Suiter also looked at whether fearful caregivers actually abuse, and found that 6% do.

In previous blog postings, I’ve called for our network to reach out to the dementia care network. Some in our field disagree. There’s a pervasive “been-there, done-that” attitude when it comes to focusing on caregivers. Some believe that framing abuse as a “caregiving issue” leads to inappropriate interventions that place victims, particularly battered women, in danger. Some fear that caregiver stress will be used as a defense to excuse the inexcusable.

Their concerns are understandable. But caregivers need and deserve help; and, in fact, there are very few programs or resources out there for those at risk of abusing. We’re in a unique position to fill that gap. We now know that caregiver stress isn’t simply a matter of how much care patients require; other factors like poor past relationships (and domestic violence), aggressiveness and violence by care receivers, mental health issues, and the “fear factor” play a role. What’s needed are screening tools to assess high risk caregiving situations and strategies to help caregivers manage aggressive behaviors, deal with their fears, and plan for their safety. If caregivers continue to feel that they will be treated unfairly or punished for asking for help, they will never reach out or get services they desperately need.

Criminal conduct should never be excused or spun as something it’s not. But in elder abuse, we deal with lots of nuanced distinctions and slippery slopes. We expect the public, judges, and juries to understand cognitive deficits, power and control, and undue influence. By comparison, caregiver stress is well within the scope of experience that anyone who has raised a child or cared for a disabled loved one can comprehend. Most of us can appreciate John Bayley’s rage and still distinguish right from wrong.