“A lot of people’s frustration — I know mine — was that you’re doing very valuable work that is really not recognized by the outside society,” Mr. Poole said.
Finding support through connection
Long-term caregiver stress has been tied to health issues, like diabetes, arthritis and heart disease. Given that, Dr. Applebaum advises caregivers to address the physical effects of anger, whether through breathing exercises, a hot shower or a run — whatever helps. Sometimes, she said, caregivers need a private place where they can just scream.
Every person interviewed for this story mentioned the power of peer support as well.
Jennifer Levin, 42, started a Facebook support group for millennial caregivers seven years ago, after caring for her father. He had progressive supranuclear palsy, a degenerative condition similar to Parkinson’s disease.
“You have the baseline of a common experience, and so you don’t have to explain where you’re coming from with this anger,” Ms. Levin said. “A lot of times, I think people worry if they express it to somebody who doesn’t totally get it, that it will overshadow the totality of their experience.”
Still, she said, there is a limit to how comfortable some people feel sharing, even in a closed forum of peers. “A lot of caregivers are afraid to express their anger, because they feel guilty.”
Ms. Brenoff’s husband of 15 years died in 2017, after 18 months of “misery.” Before he died, she found solace in another Facebook group for caregivers, which observed Throat Punch Thursdays. “That was the one night that you could sign on and say you wanted to scream at somebody,” she said. She has since remarried and written a book about her experience: “Caregivers Are Mad as Hell! Rants From the Wife of the Very Sick Man in Room 5029.”
