FALMOUTH — John Marr doesn’t remember the exact moment he realized he was losing his wife of 59 years to Alzheimer’s disease, but in hindsight the signs were visible.

The forgetfulness. The confusion. The wandering.

Sometimes, when they went out to dinner with friends, she would lose track of the conversation. Everyone else moved on, but she was left behind.

“It just sort of progressed from there,” Marr said.

Josephine Marr, 81, spends most of her time now in bed or in a chair inside the couple’s Falmouth home. The disease has robbed her of her voice and her ability to feed, clothe or bathe herself.

In the early stages, John Marr held out hope that his wife might be admitted into a clinical trial of some promising new drug that would perhaps slow the progression and give her a few more good years, but it never happened.

Not being able to do anything to treat his wife’s disease has been the hardest part, he said.

“It’s an incredibly helpless feeling,” he said.

 The couple attend a wedding. Derek Davis/Staff Photographer

The couple attend a wedding. Derek Davis/Staff Photographer

Still, Marr wanted to do something, even if it couldn’t help her. He’s 83 and retired from a successful business career that left him plenty of money to live comfortably, care for his wife and think about making a sizable contribution. He wanted to help fund Alzheimer’s research but worried that his donation might go “down the rabbit hole.”

After talking about it with his five adult children, Marr connected with Drs. Dennis Selkoe and Reisa Sperling at Boston’s Brigham & Women’s Hospital – both renowned neurologists and pioneers in Alzheimer’s research.

This month, the Marr family finalized a $2 million gift to create the Josephine and John Marr Alzheimer’s Research Fund at the hospital.

Selkoe said the money will fund research of patients between the ages of 50 and 65 who have developed the telltale amyloid plaque in the brain that is linked to Alzheimer’s but who have not shown symptoms of the disease.

“Our goal is to be able to create treatment that slows or even prevents Alzheimer’s from developing,” said Selkoe, who has spent three decades in the field. “Alzheimer’s is the only major disease that doesn’t have meaningful treatment. I want to be able to look someone in the eye and not have to give them a death sentence.”

Contributing to the gift were John and Josephine Marr’s children – John Marr Jr. of Falmouth, Bill Marr of Larchmont, New York, Elizabeth Savasuk of Cumberland, Tim Marr of Portland and Abby Psyhogeos of Weston, Massachusetts. John Marr Jr. said the family liked the idea of giving for a specific purpose rather than just making a donation to feel good.

The elder Marr knows the donation won’t save his wife, and at his age he may never see the reward, either.

“I told (Selkoe) that I hope if it can at least help my grandchildren, it will be worth it,” Marr said. “And he told me: ‘No. I want this to help your children.’ ”

‘EVERY PATH IS DIFFERENT’

John and Josephine Marr married young by today’s standards, when he was 24 and she 22.

After graduating from Bowdoin College in Brunswick, he went to work for IBM in Massachusetts before being drafted into the Navy. Josephine worked for the phone company until his military service was over and then became a stay-at-home mom, a job that suited her.

John went back to IBM for a few years but they decided to move home to Maine in 1962. He founded a company, Process Inc., that developed information systems for municipal governments. His company later became MUNIS and was eventually bought by Dallas-based Tyler Technologies.

One of his sons, John Jr., stayed on and became the company’s CEO.

The Marrs purchased a home on Foreside Road in Falmouth, where they raised their five children. The couple still live in the home today, although it looks different now.

“We’ve had a great life here,” John said last week from the screened-in porch that overlooks his yard. “I don’t think I could leave.”

He said he always feared that his wife might develop Alzheimer’s, because her mother died from the disease. When Josephine started forgetting things, John didn’t deny it but he didn’t accept it right away, either.

He first brought her to a neurologist in 2007 but the results were inconclusive. The next year, the couple left Maine to spend the winter in Florida, something they had done for years. They lasted four days before returning.

“She just couldn’t handle it,” Marr said.

From there, Josephine continued the insidious decline consistent with Alzheimer’s.

FALMOUTH, ME - SEPTEMBER 22: John Marr of Falmouth whose wife Josephine has been battling Alzheimer's for the last seven years recently donated $2 million to Brigham & Women's Hospital in Boston to fund research. John talks to his wife as she rests at their home in Falmouth. (Photo by Derek Davis/Staff Photographer)

FALMOUTH, ME – SEPTEMBER 22: John Marr of Falmouth whose wife Josephine has been battling Alzheimer’s for the last seven years recently donated $2 million to Brigham & Women’s Hospital in Boston to fund research. John talks to his wife as she rests at their home in Falmouth. (Photo by Derek Davis/Staff Photographer)

She is among an estimated 37,000 Mainers living with the disease, a number that is expected to increase to more than 52,000 in the next five years. Nationally, an estimated 5.3 million people have been diagnosed, according to the national Alzheimer’s Association. More than 95 percent are over the age of 65, and nearly two-thirds are women.

Alzheimer’s is the sixth-leading cause of death in this country, but it’s the only cause in the top 10 that cannot be reversed or slowed.

It also is among the most expensive diseases to treat. Alzheimer’s and other dementias will cost the U.S. approximately $226 billion in 2015, half of that in Medicare costs. The number is expected to increase to more than $1 trillion by 2050.

Psyhogeos, the youngest of the five Marr children, said that when she told people about her mother’s diagnosis, they tried to help by comparing it to other cases.

“I didn’t find that helpful, to be honest,” said Psyhogeos, 50, who lives with her husband and two children in Massachusetts. “Every path is different. And they’re all tragic.”

“There were plenty of times when I drove away from visiting (my parents) and I was just heartbroken.”

A PROGRESSIVE DISORDER

Although Alzheimer’s has been recognized for a century, only in the last couple of decades have researchers learned the science behind the disease.

Alzheimer’s is a progressive disorder that is linked to a buildup of amyloid protein in the brain. The protein can accumulate for years without a person showing any symptoms, but eventually it starts to affect memory, speech, balance and motor function.

“That buildup starts before you forget where you parked your car or before you forget the name of a grandchild,” said Selkoe, co-director of the Center for Neurologic Diseases at Brigham & Women’s.

Much of the Alzheimer’s research has been focused on treating the disease, not preventing it, he said.

That changed in 2013 with the creation of the A4 study, which stands for Anti-Amyloid Treatment in Asymptomatic Alzheimer’s. The study and subsequent clinical trials involving a drug designed to break up the protein have expanded to more than 60 hospitals across North America, but the project started at Brigham & Women’s.

Selkoe said although the trials did not lead to FDA approval of the experimental drug, subjects who took it saw a 35 percent reduction in the progression of the disease.

John Marr learned about that study and liked what he heard, but he wondered why the subjects were all over the age of 65. He wanted to support similar research but for a younger age bracket.

That’s how the Marr Research Fund was born.

Selkoe said he and Sperling, his colleague at the Boston hospital, will look for biomarkers in blood or spinal fluid with the hope of developing a treatment similar to statin drugs that individuals with high cholesterol take to avoid cardiovascular problems.

The amount of public funding steered toward Alzheimer’s work has increased slightly in recent years but remains woefully inadequate, Selkoe said, and is dwarfed by the money that funds research for cancer, HIV/AIDS, heart disease and diabetes.

The Marr family gift makes a huge difference, Selkoe said, because it allows him and Sperling to begin work right away. With public grants, there is often a long wait time.

“We’re a little self-conscious about it,” Psyhogeos said of the family’s donation. “I would have been happy to have done it anonymously. But the family all wanted to contribute in a meaningful way. Everybody was on board.”

GOAL: TO BREAK ALZHEIMER’S GRIP

Josephine Marr has been living with Alzheimer’s for at least seven years, which puts her on the higher end of life expectancy.

Her husband said she has had hospice visits twice recently but bounced back both times. She’s strong, he said.

John said he’s fortunate to be able to keep Josephine at home.

“My mother was a very funny, witty person,” said Psyhogeos. “She always said, ‘Don’t stick me in a home and make me look out the window every day.’ So we didn’t.”

Josephine Marr

Josephine Marr

John Marr Jr. said it makes a huge difference for family members to be able to visit his mother at her home.

Three years ago, after it became clear that the steep stairs in the couple’s early 19th-century home would not be navigable, the Marrs had a small addition built onto the house, providing a master bedroom and bath on the first floor.

John Sr. used to take care of Josephine entirely by himself, but as he’s gotten older, he needs help. A nurse is there for most of the day, from about 8 a.m. through dinnertime.

When Josephine’s day ends, John often crawls into bed, too, even if it’s early. He’ll watch a ballgame until his eyes get heavy.

He sometimes runs errands while a nurse is there, and on Tuesdays in the summer he plays golf with a group of retired doctors at Portland Country Club. He often attends the 12:15 daily Mass at the Cathedral of the Immaculate Conception in Portland.

Sometimes, he just sits out on the porch next to Josephine, reminiscing about their life together and trying not to think about the disease that disrupted their retirement years.

His biggest fear, he said, would be for his children to be diagnosed with the disease.

“Absolutely, it weighs on my mind,” his daughter, Psyhogeos, said of the possibility that she may develop Alzheimer’s, just like her mother and grandmother. “I look at my kids, who see me with my mother and think, ‘Is this going to be me?’

“But I also am very hopeful that there will be treatment and maybe even a vaccine soon.”

That’s why the Marr family decided to make the $2 million donation. They hope to continue raising money, too. A group of more than 70 friends and extended family members are competing in the Maine Marathon next month. Their goal is to raise $75,000 for the research fund.

The marathon route goes right by the Marrs’ home, and John and Josephine will be watching.