Long before Mort Stein became his wife Diane’s caregiver, she was the person supporting him through every major chapter of his life.

Married for 62 years, Mort and Diane raised two sons while Mort transformed his career from apprentice tailor to educator. When changes in Rochester’s clothing industry led Mort to announce that he was going back to school, Diane’s response was simple: “It’s about time.”

That encouragement continued as Mort earned degrees from five universities and built a long career teaching biology and physics in Brighton, as well as serving for 25 years as an adjunct professor at Nazareth University. Even when Mort decided at age 58 to pursue his doctorate—a process that would take seven years—Diane remained firmly behind him.

“She was always very supportive,” Mort says. “Every time I look at my diplomas, I say the wrong name is on there. Her name should be on every single one of those pieces of paper.”

While Mort studied and worked multiple jobs, Diane raised their sons, Scott and Robin, and built a career of her own. She worked for the Boy Scouts of America before becoming an administrative assistant at the University of Rochester’s Laboratory for Laser Energetics.

“She raised the family,” Mort says. “Actually, she raised me, too.”

Years later, the steadfast partnership that had carried them through decades of family life and professional growth began to change. Diane was diagnosed with Parkinson’s disease approximately 14 years ago. Mort noticed increasing physical symptoms, including involuntary movements in her hand and foot. Then, several years ago, Diane began to experience behavioral changes that were impacting her life with Mort.

She repeated questions, struggled to keep track of time, and experienced shifts in mood throughout the day. Although Mort’s background in biology, anatomy, physiology, and human development helped him understand what was happening, knowledge could not make the experience less painful.

For many years, Mort cared for Diane in their condominium with help from aides in the morning and late afternoon. During the hours in between—and throughout the night—he was responsible for her care.

As Diane’s needs increased, the couple began considering how they could find greater support while remaining together. They chose St. John’s Meadows, where they lived together for approximately a year and a half. Eventually, however, Mort recognized that Diane needed more care than he could safely provide in their apartment.

“She would be up three, four, maybe five times during the night,” he says. “It got to the point where I was sleeping maybe two hours a night.”

Managing Diane’s medications also became increasingly difficult. She sometimes believed she had already taken them and resisted when Mort tried to explain that it was time for another dose. Meanwhile, the falls caused by Parkinson’s became a constant source of worry.

Their sons saw the toll caregiving was taking on their father. “They said, ‘Dad, you’re going to be gone before her if you don’t do something,’” Mort recalls. “At that point, I knew they were right. I was not getting the rest that I truly needed to be of any help to her.”

The decision for Diane to move to St. John’s Home was necessary, but it was not easy.

After bringing Diane to her new home, Mort returned to their apartment and began washing her clothes. As he folded a nightgown she had worn, the full weight of the transition overwhelmed him.

“I picked up her nightgown, and I couldn’t stop crying,” he says. “I put her nightgown in my arms, and I slept with it all night long.”

Mort shares the moment because he wants other caregivers to understand that grief is a natural part of the journey—and that expressing it is important.

“I needed to get it out,” he says. “It will never be over. She’s here, and I’m there. I miss her.”

The move changed where Mort and Diane live, but it did not diminish their connection. Mort visits regularly, arriving in time to find Diane carefully applying her eye shadow before lunch. They eat together, attend programs, visit the ice cream counter, and go for drives or out to lunch when they can.

“I get a kick out of her. She makes me so darn happy,” Mort says. “She’s the center of my life.”

Mort has also learned that caring for Diane sometimes means giving both of them space. After initially visiting every day, he began setting aside time for laundry, shopping, golf, and other parts of his own life. Those breaks also allow Diane to develop friendships and participate in activities more independently.

“As much as you want to be with them on a daily basis, it’s not always a healthy situation for the resident, and it’s not healthy for you,” he says. “It’s important for me to do things that I need for myself, and it’s important for her to be independent.”

Knowing that Diane is safe, receives her medications, and has help available brings Mort peace of mind. It also allows him to return to his most important role—not only as Diane’s caregiver, but as her husband.

“I would have her home in a heartbeat,” he says. “But I know she is safe. At home, she wasn’t.”

Through his involvement with the Rochester Parkinson Network and his work in education and gerontology, Mort has seen how valuable information and connection can be for families. He urges caregivers to ask questions, seek out organizations, attend meetings, and learn from people traveling similar paths.

“Communication is so important—communication with others and communication with yourself,” he says. “You have to look at things and ask, ‘What is the best way I can handle this?’ And if you can’t handle it, you look for someone who can help you.”

Mort believes resources for people living with Parkinson’s and other related diseases are essential, but he sees an equally urgent need to support the family members caring for them. Caregivers need practical information, reassurance, and permission to acknowledge their own limits without guilt.

They also need hope. Even as the disease progresses, Mort believes the person they love remains present.

“They know you’re there,” he says. “It may last two or three minutes, but something sparks. They are always there with you.”

For Mort, love now looks like holding Diane’s hand, sharing lunch, offering a reassuring hug, and returning the next day. It means accepting help when love alone can no longer keep someone safe. It means continuing to see Diane—not simply her diagnoses—and honoring the woman whose support made his own life possible.

“My care for her and my love for her will never change,” Mort says. “She’s my whole life.”