Doing For, or Doing To

On Thursday night Anderson Cooper gave most of an hour of All There Is Live to two caregivers, and on Friday CNN put it on its front page. Caregiving touches nearly every family and rarely gets this kind of mainstream airtime. It is about time. Sue Sullivan cared for her son Dermot from his first seizure at four months old until he died at 19 last December. Heather Gale cares for her husband Chris, whose rare genetic disease, adult-onset MLD, has caused his dementia. Both describe the grief that starts years before a death, the kind most families feel and almost never name.

Sue called it constant grief. Every time life settled, something else happened and the family had to pivot again. "My life with him was all have to," she told Cooper. Heather talked about watching Chris fade in pieces, and about the guilt of laughing at a concert while he is at home losing pieces of himself. Most caregivers carry that guilt every day, she said, and almost none of them say it out loud.

The episode is also a record of how hard the systems make it. Heather spent more than 20 years fighting to be believed. Chris was labeled with schizophrenia, ADHD and Tourette's before an MRI and a radiologist from a children's hospital finally led to genetic testing and a diagnosis at 46. Now he is 54, too young for most programs, and she earns too much to get help, so he stays home and their two sons watch out for him. After appointments he sometimes asks her in the car, "did they say I'm dying?"

The line that stays is one a doctor gave Sue and her husband near the end. They had to decide what they were going to be doing for Dermot, or doing to him. By then, she said, most of what was happening was being done to him. It is a question families deserve to hear early, in a calm room, not first in an ICU.

Neither woman asked for a fix. They asked to be heard.