Caregiving for a loved one can be stressful, depressing — and rewarding

It was the most important thing I would do that week.

One morning, I walked around the hospital introducing myself to patients. I stopped by the room of a woman in her late 80s with dementia. Her ability to swallow — to ensure that food and water and saliva reached her stomach and not her lungs — had grown tenuous.

“Dry,” she whispered. “My mouth. So dry.” I noticed her cracked lips, the miscellaneous debris crusting around her mouth.

A cup of ice cubes sat on the table near her bed, just out of reach. I helped her sit forward. I placed one cube in her mouth. And I watched, as a smile spread across her face.

I thought, chagrined, of how, in all likelihood, I wouldn’t spend the next week sitting with patients — exploring what they want, understanding the toll that illness exacts on their lives. I’d spend it staring at screens, ordering tests, devising diagnostic plans. I wondered whether, as physicians, we focus too narrowly on the treatments we’re trained to provide instead of the more holistic care patients need.

Arthur Kleinman thinks so. In his new book “The Soul of Care: The Moral Education of a Husband and a Doctor,” Kleinman, a psychiatrist and anthropologist at Harvard, chronicles the harrowing decade he spent caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer’s disease in her 50s.

He describes the process of navigating a health care system that seemed to offer plenty of clinical care but little compassionate care as she declined from a lively, witty Sinologist to a woman unable to see, dress herself or recognize loved ones.

The book opens with a fearful and disoriented Joan, years into her decline, screaming at Kleinman, unable to recognize her husband or the home they’ve lived in for nearly three decades. For him, the pain of his wife’s angst is amplified by the recognition that their bond, which had deepened over a half-century, seemed to have shattered in an instant: To Joan, he was now a strange man in her room — not someone she had loved and supported her entire life.

For many caregivers, the pain of losing a loved one’s companionship is compounded by many financial and health burdens. Family caregivers are often forced to reduce the number of hours they work and can lose hundreds of thousands of dollars in wages over their lifetimes, resulting in considerable financial strain.

The physical and mental strain, however, is often worse. Caregivers are at substantial risk for anxiety, depression and chronic disease. One study found that compared with noncaregivers, people who experienced significant stress while caring for a disabled spouse were 63 percent more likely to die in the next four years.

Kleinman emphasizes how the daily act of caregiving took a toll on him and how he felt unsupported by the medical system.

What can clinicians do? A first step is simply to identify the patient’s primary caregiver and list them in the medical record. This allows clinicians to more reliably explore caregivers’ unique circumstances and concerns, and ensures that confusion about health care privacy laws doesn’t limit the loved one’s ability to engage in the patient’s medical care.

Clinicians should also help caregivers gain proficiency in the many tasks — changing catheters, dressing wounds, checking blood sugar levels — they may need to provide. Too often, we assume caregivers can perform these complicated medical tasks without taking the time to help them learn.

And all caregivers should be made aware of available community resources, such as peer support groups, meal delivery services and respite programs. The Eldercare Locator is a free national service that helps caregivers find such resources.

Still, Kleinman’s ultimate message is a hopeful one: that the act of caring can transform both caregiver and care recipient.

Despite unrelenting challenges, many caregivers feel fulfilled, even enriched, by the act of caring for a loved one. Clinicians can and should work with caregivers to ease what’s burdensome and preserve what’s beautiful in caregiving.