Early Alzheimer’s makes elderly parents caretakers again, as son’s memories slip away

Cortland, N.Y. − It was just an average car – so average no one can remember what make it was now. But Dan Camp still winces when he remembers the day they took away his keys.

“I wish I could still be able to drive. You know. I wish I could,” he says.

He lost his keys the day of his diagnosis with Alzheimer’s disease.

His whole family gathered in the doctor’s office. Everyone cried. Then, the doctor told Camp he could not drive. It wasn’t safe.

They knew that. He’d already gotten lost. And they even expected the diagnosis at this point. That day in April 2018 was the light bulb after nearly a decade of unexplained forgetting and confusion that had gotten worse.

But at Camp’s age, it’s still hard to make sense of it. He is 61.

This is a disease his parents should have, not him. Dave Camp is 85 and Joyce Camp is 83.

Dan is one of about 200,000 people diagnosed with younger-onset Alzheimer’s disease – that’s about 5 percent of the people with the disease. But it’s likely the number will grow; the younger-onset diagnosis is relatively new.

It is gaining attention in the medical community and more people like Camp are having their yearslong mysteries solved. And it is gaining attention in Congress, where legislation was proposed this year that would extend benefits offered to elderly people to those diagnosed with younger-onset Alzheimer’s and dementia.

Dan was an electrician for the Homer school district. A funny, outgoing guy, he was the family fix-it man. His mother used to beg him to never move out of Cortland County, where they live. Who would fix things then? Dan and his ex-wife raised two daughters who are now in their 20s.

Dan is the oldest of Dave and Joyce Camp’s four children. They have 11 grandchildren and are great-grandparents, too. They prepared for retirement: They have a nice spot in Florida where they escape winter. They prepared to take care of each other in old age (Dave had quadruple bypass surgery earlier this year.).

But they never prepared to return to the roles they left behind decades ago. And nothing prepares anyone to watch their child lose hard-won milestones.

They have help from the rest of their tight-knit family, the Alzheimer’s Association of CNY, their church and friends.

But most of the support groups for caretakers are people Dan’s age; the sick people are the parents. And the programs for people with Alzheimer’s and dementia are full of elderly people. Dan is funny and friendly and never minds chatting. But there are a lot of Lawrence Welk people. He’s a Dead Head.

So Dan’s family has worked to build their own program for him as memory and function erode. They keep him busy – filling his days with Pickleball, bowling, dishwashing at the local soup kitchen. They let him make the choices he can. And they work to find the joy in this path – theirs and his.

***

The rites of passage had begun slipping away. Dan moved back in with his parents after it became clear he couldn’t live on his own. And with the order from the doctor, he surrendered his keys.

Joyce, a retired nurse, and Dave, a businessman, constantly balance Dan’s safety with his dignity. The equation is always shifting.

“What we’ve tried to do is take the best friend approach, rather than be parents,” Joyce says. They ask him his opinion before making decisions for him.

When they had to take Dan’s keys away, they gave him a new option: a motorized bicycle. So far, he’s been able to navigate the streets he grew up on, learned how to drive on.

But there have been hiccups. The bike cost more than $1,000 and a clever thief broke the lock and stole the bike when Dan was playing pickleball. His daughters raised money and bought him a new one.

When the weather is bad, he has to get a ride. This hurts his pride.

But his parents and siblings have helped create a schedule of places Dan wants to go, so it’s worth the pinched pride. And his mother tries to make it clear: She’s just hanging out. She’s not in charge of Dan.

But they are his parents. And there are hard choices ahead. They make the choices they can with him, but they have to make some for him. They’ve been to a lawyer, the way they might for themselves, to come up with all the right legal paperwork.

Joyce schedules fun things for Dan like she might a young child.

On a rainy day in early November, there were two of Dan’s favorites: pickleball with the seniors and washing dishes at Loaves and Fishes, a free lunch program at the church down the street.

The day before he raked leaves with one of his nieces and played with her new baby.

Dan smiles and cradles an imaginary baby: “I got to hold the baby,” he says, proudly.

***

Dan’s daughters are in their 20s now. He tells a stranger about them, but struggles with their names.

His mother fills in his blank, gently.

Yes, yes, Dan says. There is Emily and Libby.

What will you be soon, his mother asks?

Dan’s smile stretches wider. There is no forgetting. She says it, but he knows it.

He’ll be a grandfather soon.

“It’s going to be a girl,” Camp says, excitement and a question in his voice. Yes, his mother assures him. A girl.

His family works to make sure Dan doesn’t miss out on the things that he’s earned. Like the father-daughter dance at his daughter Libby’s wedding.

For months they practiced in secret. It starts out in a proper, traditional way: Father and daughter slow-dancing to Louis Armstrong singing “What a Wonderful World.” Then that music screeches to a halt. They pull out inflatable guitar props and put on sunglasses. They riff and dance to Guns n Roses singing “Sweet Child O’ Mine.”

They laugh together. The guests are shocked. No one knew. Then Dan takes his daughter’s hand and the music switches back. Armstrong concludes, “What a wonderful world.” Dan twirls his daughter and smiles.

Back in the gym, Dan sees the pictures of that dance. That was fun, he says, smiling. So fun.

Then he goes back out on the pickleball court. Dan bounces from leg to leg as he bonks the whiffle ball with his racket. (pickleball is hybrid of tennis that uses paddles like those in ping-pong and whiffle balls). He calls out the score, then double checks with a teammate. The numbers are hard for him.

Dan’s father leans in, a little proudly, to point out Dan is doing well. Dan was a theater kid, not a jock, in high school. So his prowess on the pickleball court is new.

The other players all like Dan, the young guy. He’s funny, nice and, well, good.

And in quick conversation it can be hard to tell that there’s anything amiss with Dan. Some acquaintances have questioned whether the diagnosis is correct.

Joyce sighs as she tells this story. There is no doubt. It goes well beyond his job, his car and his ability to live alone. He cannot read music or books. His signature that used to be so lovely is no longer.

Tears start in the corners of Joyce’s eyes as she says this. But she stops.

“Every day is an adventure,” she says.

Dan laughs and says, dryly: “That’s for sure.”

“We try to laugh every day,” Joyce says.

Have you today? Dan takes that question and starts laughing, falling into his mother, who is also laughing.

“It’s easy,” he says. “I’d say look for happy things in your life. And me, it’s my faith. There are many ways people have of … coping. Mine is my faith.”

Dan starts each morning with his mother, thanking God for one thing.

On a recent morning, he had this:

His daughter had her baby. Dan became a grandfather. Amid all the forgetting, he made a new memory: He held the baby in his arms and rocked her to sleep.

Marnie Eisenstadt is a reporter who writes about people and public affairs in Central New York. Have an idea or question? Contact her anytime: email | twitter| Facebook | 315-470-2246

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