Alzheimer's Starts To Steal The Joy Of Being A Grandfather

Jun 17, 2017
Originally published on June 17, 2017 7:26 pm

"They're not gonna want me to play 'babies in space'," says Greg O'Brien. "You know, where I pick 'em up in my hands and I swirl them around over my head like a rocket ship. I always say 'Babies! In! Spaaaaace!' "

It's October 2016, and he is musing about the latest O'Brien family news. His daughter, Colleen, is due to have a baby in November, and ever since he found out, Greg has been struggling with competing emotions.

"I'm not quite sure what to expect," he says. "Am I excited? God, yes. And will it lift me up? Yes it will." Eight years after he was diagnosed with early onset Alzheimer's disease, O'Brien knows that becoming a grandfather could add new motivation and joy to his life.

But eight years of memory loss, depression, anger and mental decline have left 67-year-old O'Brien, who lives in Brewster, Mass., a different man than the outgoing writer and father who raised Colleen. He is easily confused, overwhelmed by groups and exhausted by conversation.

Sometimes he is paranoid. Sometimes he knows he is paranoid.

So even before his grandchild arrives, he knows there will be physical limits on how he can interact with the infant. "You know, they're not gonna want me to put the baby on my shoulders. Hug the baby, pat the baby," he says. "I get it. I'm not going to fight it."

There are other problems, too, with meeting a new person when your mind is in decline. Greg's identity is slipping and shifting under him. He never used to be angry or anxious. "You know, I'm an imperfect guy, but an OK guy," he says, "and my grandchildren really aren't going to get to know me. Someone else will have to tell them."

"I feel a little bit, when I think about grandkids, like a shell of myself. So it's kind of bittersweet."

"Maybe through my writing, through other things, you leave a legacy behind," he says. "I may try to connect in the heart and the soul. Just looking, smiling, touching and have my grandkids remember me that way."

Adeline

It's Christmas. Adeline is 1 month old, and she spends most of her time sleeping. The house on Cape Cod is full of people, celebrating and talking. Colleen sees her father leave a crowded living room, seeking quiet and solitude. She finds him later sitting with his granddaughter, both of them content in their own worlds.

It's January. In Massachusetts, the snow is 2 feet deep. The Christmas tree made it out of the living room and onto the back porch, only to be stranded in a snowdrift.

When Greg sees it out of the corner of his eye, his mind transforms it into a billowy monster, crouching outside the door.

But it's just a tree, and he pulls his mind back to reality and snaps a picture on his phone. Two-month-old Adeline would like this tree monster. He sends her a text, c/o her mother.

Adeline,

Too bad you couldn't make it to the Cape on your tricycle last night. The Christmas tree on the deck turned into a snow monster and ate Conor and Mary Catherine. One gulp! I'm here alone and need you... Lots of snow, lots of sap...

Love,

Grandpa

"Sometimes I'm thinking straight, and sometimes not," he says, but when something makes him laugh these days, he likes to send his granddaughter a text. "So she kind of gets a sense of me today," he explains. In another text, he calls her his snow angel. In another, he updates her on a New England Patriots game.

Now it's April. Colleen has brought 6-month-old Adeline to visit her grandparents. An evening conversation about the cable bill quickly turns into an argument between Greg and his daughter. Colleen is alarmed by her father's angry outbursts. Greg is frustrated by all the people in the house, talking into the evening, making him feel like he needs to be social. Both feel like the other person just doesn't get it.

Sometimes, it feels to Greg like his granddaughter is the only person who gets it.

"She's so innocent and so accepting of me that I enjoyed being with Adeline far more than anyone else," Greg says. "It's the innocence of a child."

Now it's May. At nearly 8 months old, Adeline is a joyful baby, screaming with delight, bouncing up and down and drooling onto her clenched fist.

She and her grandfather do not play babies in space. When they spend time together, there is almost always another adult around.

And yet they interact so naturally. He holds her, makes faces at her and sings to her. "They do a lot of snuggling," says Colleen. He does his legendary Donald Duck impression and Adeline giggles uncontrollably.

Since his granddaughter was born, Greg has written extensively about her, in text messages, emails and essays. A revised edition of his memoir being published this summer includes a chapter titled Sweet Adeline.

In it he writes of her birth. "New life. New hope. Something new to live for."

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

MICHEL MARTIN, HOST:

Now we have a story about coping with a disease that's becoming more common in the U.S. When Greg O'Brien discovered he was going to be a grandfather, he says he was both happy and worried. That's because the 67-year-old has early-onset Alzheimer's disease. NPR's Rebecca Herscher has this report.

REBECCA HERSHER, BYLINE: For years, Greg and I have been checking in on the phone every month or so. We mostly talk about his Alzheimer's symptoms - depression, anxiety, paranoia, confusion and, of course, memory loss. It's been eight years since he was diagnosed. And beginning last fall, we also talked a lot about his impending grandfatherhood. He had a lot of concerns.

GREG O'BRIEN: They're just not going to want me to be alone with the baby because they're afraid. They're not going to let me pick the baby up when the baby's crying and hug the baby and pat the baby. By the way, I haven't talked to anyone about that before. You're the first person I've talked to, but it's been on my mind.

HERSHER: Another problem - Alzheimer's has affected Greg's balance. His feet and legs get numb.

O'BRIEN: They're not going to want me to put the baby on my shoulders, OK? They're not going to want me to play babies in space.

HERSHER: What is babies in space?

O'BRIEN: Well, where you - I pick them up in my hands, and I swirl them around over my head like a rocket ship. And I always say, babies in space. And they all laugh and, like, I turn them down like they're going to land and then up like they're going to - you know, I do it gently. But that ain't going to happen. No one's going to allow me to do that.

HERSHER: And there was a deeper issue eating away at him.

O'BRIEN: My granddaughter or grandson isn't going to really get to know the real me, and that bothers me. It's sad for me. It's almost like someone's going to have to reconstruct it. So it's kind of bittersweet. Does that make sense?

HERSHER: That was last October.

COLLEEN: It's been really incredible watching him, very, like, moving to watch him with her.

HERSHER: In November, Greg's daughter Colleen gave birth to little Adeline. They live a plane ride away, but that hasn't stopped granddaughter and grandfather from bonding.

COLLEEN: Yeah. Thank God for FaceTime because we do that a lot. He sings a little song to her a lot.

You want to say hi? Hi.

ADELINE: Hi.

O'BRIEN: Oh, God, yeah, she just lit my life up. And, you know, as she's childlike and I become more childlike, we kind of connect. And so I make funny faces at her 'cause I make funny faces at people. And she makes funny faces back at me. And I stick my tongue out, and she sticks her tongue out. And I purse my lips, and she purses her lips. And we're having a hell of a conversation. So it's, you know, she pees in her pants, and I pee in my pants. So we're - we've kind of connected on that.

HERSHER: Greg is a writer by trade, worked at newspapers on Cape Cod for most of his career. Since Adeline was born, he's written extensively about her and to her.

O'BRIEN: Here's some text messages I sent to my infant granddaughter, Adeline. Here's the first one.

(Reading) Adeline, too bad you couldn't make it to the Cape on your tricycle last night. The Christmas tree on the deck turned into a snow monster and ate Conor and Mary Catherine - one gulp. I'm here alone and need you - lots of snow, lots of sap. Love, Grandpa.

Adeline, my sweet little slubs, the snow monster is now gone. And the Christmas tree on the deck is back. You saved the day, you snow angel. I suspect Conor and Mary Catherine...

HERSHER: Greg O'Brien is publishing a revised memoir this summer. He's written a chapter titled Sweet Adeline. In it, he writes of her birth - new life, new hope, something new to live for. Rebecca Herscher, NPR News.

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