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Behind the Scenes: Caring for the Caregivers

Associate editor Lydialyle Gibson examines the role of the “Invisible Second Patient.”

 

When I was in seventh grade, my best friend’s father was diagnosed with early onset Alzheimer’s. He was in his late 50s. Her mother had trained as a nurse, and although the two of them were divorced, they’d remained close, and when he got sick, she took him in. For more than a year she cared for him in her home, until the situation became unmanageable and she had to move him to a residential facility. My sharpest memories from that time are of my friend’s shock and grief as her father deteriorated, and of her mother’s incredible stamina. I glimpsed her caregiving only indirectly, in the stories my friend told, but I remember how demanding and difficult that work seemed, how terrifying and chaotic things sometimes became. 

That was more than 30 years ago. In the decades since, I’ve known several friends and acquaintances who became caregivers for loved ones with dementia. (It’s no surprise this is a common experience: right now, more than seven million Americans over 65 have Alzheimer’s, a number that’s projected to grow to 13 million by 2050.) My grandmother looked after her own mother, who developed dementia in her late 80s. Witnessing the caregivers in my own life, I’ve been struck both by the difficulty of this role and the strength and love it requires, but also by the fact that healthcare providers have often seemed unable to give much guidance to family members navigating this ordeal. 

So when I heard about the work of Christine Ritchie, a geriatrician and palliative care physician who studies the caregiver experience, I knew I wanted to talk to her. Ritchie directs the Dementia Care Collaborative at Massachusetts General Hospital (MGH) and teaches at Harvard Medical School, and has been doing this research for decades. She is one of a growing number of clinicians—doctors, social workers, psychologists, and others—who are devoting rigorous, sustained attention to caregivers’ needs and experiences. 

In the four months I spent reporting this story, I spoke with Ritchie and several of her colleagues who are working on this problem. I read numerous scientific studies, as well as the luminous, searching memoir The Soul of Care: The Moral Education of a Husband and a Doctor, by Arthur Kleinman, a psychiatrist and the Rabb professor of anthropology and professor of medical anthropology.

I also spoke to nearly a dozen caregivers: people like Tom Lee, who spent six and a half years caring for his wife, Antoinette, after she was diagnosed with Alzheimer’s; and a man I called George (a pseudonym to protect his privacy), who has been looking after his husband for more than seven years.

Caregivers talked to me about the pain of ambiguous loss, as loved ones fade away while still being physically present. They described the loneliness and isolation they feel, and the intense, sometimes debilitating financial pressures that dementia caregiving imposes. They told me about delaying or foregoing their own healthcare needs in order to look after loved ones, and they voiced disappointment and anger at a health system that has often let them down. But they also spoke of love: how it yields unexpected flashes of joy amid the deepest sorrows, and how it pushes them to keep going even in the most painful times.

The caregivers are the heart of this story. Across the country there are more than 11 million other people like them, who continue to fill these difficult, precious, necessary roles. 

Sometimes, we get the chance to write a story that reminds us why we do this work. For me, this was one. Harvard Magazine’s editors helped me focus my research and reporting into this enormous subject, and they guided me through several rounds of revision. I’m really grateful for the time and support I had in putting this feature together, and also for the care and seriousness that I was allowed—and expected—to bring to it. Support from donors like you makes all this possible.
 

Read Caring for the Caregivers