‘I’m tired of being the sad story’: Berwyn’s Nadine and Kevin Rudd open up about his early-onset Alzheimer’s

Samantha’s wedding isn’t until October but Kevin Rudd, father of the bride, is already working on his toast.

He scribbles ideas in a journal as they flicker in his brain: sweet father-daughter moments, questions to puzzle through. Which songs did Sam and I sing on car rides to the College of Charleston? What was the funny thing that happened on our trip to Piney Point?

Ten years ago, Kevin would have delivered a pitch-perfect toast. A prominent investment banker and practiced public speaker, he would have nailed it. No stage was too big, no microphone too intimidating.

But today, at age 63, he’s worried. Will he get the words out without jumbling them up?

If it weren’t for the wedding, Kevin wouldn’t be thinking ahead like this. Fast-forwarding his life is disquieting. Heck, he can barely play it backward.

Officially diagnosed with early-onset Alzheimer’s in 2022 but showing signs of slippage years before, Kevin lives in the now.

He understands his disease. Watches it tiptoe into all corners of his life, sneaky and greedy-handed. Taking, always taking.

He’s fully aware of all he’s lost: his job, his freedom, most of his social life.

Unable to run meetings, he had to retire three months after his diagnosis.

His license was revoked after he failed a Bryn Mawr Rehab driving test. He couldn’t follow simple directions to navigate a car through Malvern. It wasn’t the first time Kevin had become lost at the wheel.

Invitations to golf and lunch with Waynesborough buddies have slowed to a trickle. Kevin has trouble finding his golf ball, sharing a fun story and following conversations.

It stings, all of it.

The man who once closed million-dollar deals can’t sell a stock or write a check. He can’t tell you what 9 plus 4 equals.

The fun seeker who initiated social get-togethers, booked the hotels and bought the tickets has ceded all planning to Nadine, his wife of 35 years. He has to read from Nadine’s script when he calls the barber.

“I’m the husband and the wife,” Nadine shares during out extended interview in the Rudds’ Tredyffrin home. “I’m losing my best friend, the love of my life, on a daily basis, through small losses all the time. This was the first year Kevin didn’t remember our anniversary; he didn’t remember my birthday. There’s a lot of tears; I’m not gonna lie. This is not what you expect your retirement to look like.”

There are personality changes, too. The old Kevin was outgoing and loquacious. He’s muted now, straining to understand conversations, frustrated, at times, by his lapses.

At family dinners, Nadine knows to seat him in the middle of the table. He won’t be able to track the conversation if he sits at the head.

Early in his forced retirement, Kevin tried to fill time with guitar lessons at George’s Music. But when he couldn’t play chords learned the prior week, he quit.

For a longer stretch, he volunteered at Surrey Services in Devon: sorting donations, helping out in the fitness room, bussing tables in the café. But that gig ended last summer when Surrey’s volunteer coordinator called to say Kevin could no longer follow simple directions. Surrey, regrettably, couldn’t supervise him.

“That was a big blow,” Nadine recalls. “He felt like he had a purpose again. He can’t be working in investment banking, but he could be servicing the elderly. He felt a connection there.”

The Rudds know Alzheimer’s all too well.

Kevin’s mother had “textbook” Alzheimer’s, Nadine says. She was diagnosed at age 69 and passed 10 years later.

Nadine’s mother, who’s now 83, has lived with Alzheimer’s for about a decade. After she moved in with her son in Bucks County, Nadine started bringing her mom to Berwyn two weekends each month to give her brother a break.

Unlike Kevin, Nadine’s mom denies her diagnosis. “When she’s here with us, I feel like I live in a Looney Tune.”

Kevin’s case is different. “He’s in great physical shape; he eats really well. He knows what’s happening.”

As it often does, Alzheimer’s came on slowly for Kevin.

He’d be cooking and would ask Nadine to fetch “that round thing” – a spoon but he couldn’t name it.

He’d be picking up a prescription for Nadine but couldn’t give the pharmacist her birthdate.

He might forget that he’d eaten breakfast.

Or what he had for dinner last night.

Once he asked Nadine: Was I born in 1961 or in 1951?

“Something is off here; you have to see a doctor,” Nadine announced one day.

Their physician at Devon Family Practice did a short test and concluded Kevin was “just getting older.”

Nadine was unconvinced. A few months later, the Rudds went to Penn Medicine for a “litany of testing.”

His MMSE (Mini Mental State Evaluation) score was 24 out of a possible 30. Worse yet, brains scans showed telltale amyloid buildup.

On August 25, 2022, Penn neurologist David Irwin made it official. Kevin had Alzheimer’s – the “early onset” variety because he was under age 65.

“Sheer panic” ensued, Nadine says.

They’d heard that early-onset Alzheimer’s life expectancy was 3 to 7 years. Kevin had been showing signs for at least a year before his diagnosis. There was no time to waste. (The couple has since come to understand that Alzheimer’s “is different for everybody.”)

Money was their first worry.

Because Nadine works part-time as a paralegal and Kevin was the breadwinner, they quickly put their house on the market “out of pure fear.”

Beautifully appointed on a lovely street in Tredyffrin-Easttown School District, it attracted a buyer in no time. But that deal fell through and the Rudds wisely decided to stay put. Familiar surroundings are key for people with Alzheimer’s. Their home became their refuge.

Shortly after Kevin’s diagnosis, normally sunny Nadine sunk into a dark depression. “I became a recluse,.. I was sobbing 24/7. Then a light bulb went off, like, this is not how you want to live your life. So I had to do the work to get out of it. And if you asked any of my friends, I think they would say: For the hand that she’s been dealt, she still can smile.”

After Nadine righted herself, the Rudds jumped on a promising new treatment.

Kevin had been approved for bi-weekly infusions of a new FDA-approved drug, Leqembi, that was helping some patients regain executive functioning skills. They’d have to pay $1,300 per treatment but “we made the decision as a family” to go for it. “I would sell everything I owned for a cure for Kevin,” Nadine says.

From March 2024 to January 2025, Kevin received infusions at the Hospital of the University of Pennsylvania.

They also tried acupuncture and yoga – anything to “calm Kevin’s inner voice.”

But his disease, stubborn, relentless, progressed.

Some $27,000 later, Leqembi was looking like a bust.

A second MMSE test confirmed it. Kevin’s cognitive score had fallen again, from 24 to 14.

“We were so hopeful,” recalls Nadine. “It was incredibly hard. We’d fought so hard.”

The Rudds changed course. They stopped the infusions and memory pills and would enjoy whatever time they had left together. They started traveling again – to Spain, Bermuda, the Chesapeake, New York City.

Kevin keeps a tracking device in his wallet and wears an ID bracelet but after she lost him at the Philly airport, Nadine holds his hand in public places. When Kevin is in the restroom, she knows to station herself outside the door. Big trips in big airports, like most everything else, have become harder.

People who know them have openly wondered why the Rudds have chosen to go public with their story. So we asked them.

First, they want to shine a light on a disease we all fear and don’t fully understand.

“We want people to not stigmatize it,” Nadine explains. “When someone has breast cancer, people surround her, they know how to help, they ask her how she’s feeling. With Alzheimer’s, people are afraid to ask that question. Not knowing what’s going on in someone’s brain makes people uncomfortable.”

They also want to strengthen old connections and forge new ones.

Nadine hopes to hear from “people who are afraid my story might become their story … I want to be the person they call and say, ‘Something’s off with my husband or my mom right now. Can we talk about it?”

Nadine doesn’t know any local caregivers for a spouse with early-onset Alzheimer’s. Not one.

“My friends can think they understand what it’s like but they can’t. Just like I don’t know what it’s like to be a grandmother yet because I’m not a grandmother.” Last fall, she joined Surviving the Now, an online support group for people whose spouses have early-onset Alzheimer’s, hoping to find participants who live nearby.

Nadine wishes that someone local with the same disease will read Kevin’s story and invite him out for coffee “while both still know what’s happening. Maybe they can sit just there and go, ‘This sucks.’”

Only a few friends are regularly reaching out. One, notably, is Waynesborough golfing pal Joe Vogt, a heart transplant patient who knows all too well the burden and isolation of life-threatening disease.

Nadine also wants old friends to have a fuller picture of Kevin’s life. “They’ll say, ‘Oh, Kevin’s at a party and he’s talking. He seems great.’ But they saw him for an hour; they don’t live with him 24/7, seven days a week.”

If they’re better informed, old friends might not be as quick to call out Kevin on a story he gets wrong, a name he forgets, a ball he can’t track. “He has a brain disease. Why would you do that? That’s where I get angry.”

The Rudds are blessed with a “very good group of friends but people are busy with their lives; they’re working.” They mean well but often don’t know what to say. “When friends tell me I’m so strong, they’re wrong,” Nadine says. “There are days when I’m literally just hanging on … Instead of asking what I need, assume I need something because I do. If you make a pot of soup, just tell me you’re dropping some off.”

Not that their friend group hasn’t been extraordinarily supportive and generous, she says. Of the 618 teams entered in last fall’s Walk to End Alzheimer’s, the RuddStrong team of 54 walkers (below) raised the Walk’s third highest total: $44,250. (The two higher-ranking teams were corporate.) “For our family, that Walk is like Christmas morning. I don’t feel alone that day.”

But as Kevin slips further, their world is shrinking.

Their three adult children have stepped up but they don’t live in Berwyn. Most days, it’s just the two of them and their dog, Otto, sharing a quiet, cloistered life at home.

Conversation is hard for Kevin so they do things that don’t require much of it.

They work out and stretch together in their small basement gym.

Devout Catholics, they read the Bible and pray together each day, guided by the Hallow app.

Longtime foodies, they cook together. Nadine takes the lead; Kevin is sous chef. “He’s a great chopper,” his wife says. Sometimes they meet their adult kids in Center City for dinner.

Kevin can still take Otto out for walks. He can still find his way home from runs and bike rides on the Chester Valley Trail. With a few trusted friends, he occasionally plays a round at Waynesborough.

Ask Kevin his biggest fear and he looks at his wife, blinks back tears, finds three ways to say the same thing. “If you died. Losing you. If you weren’t with me.”

With her family history of Alzheimer’s, Nadine could undergo genetic testing to ascertain her risk. She’s taking a pass.

“Why do I want to live my life knowing I’m going to get a disease that there’s no cure for? Or do I just want to live my life knowing I’ve got today – that’s all I have – and I’m going to live it fully?”

Shouldering a boulder of loss and persistent, low-grade fear, Nadine insists she’s happy. “I trust in God and I try not to be afraid.”

She feels closer to Kevin, closer to her kids and grateful that Alzheimer’s has given her “this reset in life … You realize: Take the trip. Do the expensive dinner. Because at the end of the day, if you have all this money saved up and you didn’t spend any time together, what is that? How fun is that?”

Nadine has become a compulsive photo taker and videographer. “It drives people crazy but those images are etched in my phone forever. They’re etched in my memory forever.”

For now though, she’s focused on her daughter’s wedding, her son’s engagement and finding peace in the everyday.

“I don’t know what our story looks like in the end, but I know how Alzheimer’s looks and what happens. So in between – from the diagnosis to the end game, whether Kevin remembers today or he doesn’t – I’m going to make as many memories as I can.”