In this installment of NPR's series Inside Alzheimer's, we're sharing a recent video of Greg O'Brien at home on Cape Cod, Mass. A longtime journalist, O'Brien was diagnosed with early-onset Alzheimer's disease in 2009.
The first time I interviewed Greg O'Brien, back in January, I asked him what he was most afraid of.
"I'm afraid of the in-between," he said.
He loves living and he's not afraid to die. It's everything in the middle — the long decline, the loss of identity and independence, his family's pain — that terrifies him.
Beyond Greg's memory loss, he and his family are dealing with an unsettling reality. Alzheimer's is, in some ways, changing who Greg is. And as soon as they get to know each new version of his personality, it changes again.
His wife Mary Catherine tells him she's proud of him for fighting through the losses to write about his experience the last few years.
"He's more open," she tells me. "We just talk about hard stuff that we used to maybe put off or avoid."
But she's also afraid of some of the changes she sees.
"You get so angry," she told Greg a few weeks ago. "You never used to get so angry."
And he's always been outgoing — the guy at the head of the biggest, loudest table at any gathering. These days, Greg is quieter and more solitary, disappearing into a back room or retreating into a corner when a crowd of family or friends overwhelms him.
Some changes are hard, but the family is learning to love Greg as he is — not as he was yesterday, or as he might have been if he'd never gotten Alzheimer's.
"You're still funny," his son Conor told him recently. "You're slightly different, but you're still funny."
Greg is learning to love himself, too, and to be at peace with the changes, even if he doesn't trust his brain anymore. He's learning to value the past — and to let it go.
"I know I can't go back to who I was before," he says in this short video by Amanda Kowalski and Samantha Broun. "I've got to learn to live with the new me."
Photographer Amanda Kowalski and radio producer Samantha Broun of SoundLight Media produced this video in association with Atlantic Public Media. Greg O'Brien and his family hope to share more of their experiences with Alzheimer's in future installments of Inside Alzheimer's here on Shots.