For a dozen years, Larry Bocchiere, 68, didn’t find it especially difficult to care for his wife, Deborah, who struggled with breathing problems. But as her illness took a downward turn, he became overwhelmed by stress.
“I was constantly on guard for any change in her breathing. If she moved during the night, I’d jump up and see if something was wrong,” he said recently in a phone conversation. “It’s the kind of alertness to threat that a combat soldier feels. I don’t think I got a good night’s sleep for five years. I gained 150 pounds.”
As her chronic obstructive pulmonary disease worsened and heart failure set in, Deborah was taking 24 medications each day and rushing to the hospital every few weeks for emergency treatments.
“Toward the end, I couldn’t stay in the same room with her for too long because I couldn’t stand to watch her being so sick,” Bocchiere said. His wife died in 2013.
The risk is that marriages will be undermined by illness and essential emotional connections lost.
“The well spouse can go from being a partner and a lover to a nurse and a caregiver, which is an entirely different kind of relationship,” said Mastrogiovanni, who cared for his wife, Kathleen. She had multiple sclerosis for 50 years before she passed away last year.
Spouses can also become distant as they struggle with feelings of loss, fear, and, frequently, misunderstanding and anger.
“He wouldn’t talk to me. He would seem like he was angry at me, but I didn’t really understand,” said Terri Corcoran, 69, whose husband Vincent had Fragile-X associated tremor/ataxia syndrome, a neurodegenerative disorder.
It took five years for Vincent to get a diagnosis. During that time, Corcoran said, “I felt like I married someone I didn’t know. It was devastating. It took me a long time to realize his brain was impaired.”
How can older couples navigate these challenges and protect their relationships—an essential source of comfort and support—when illness strikes? Several experts offered suggestions:
In retirement, the couple had planned to do a lot of biking, hiking, and adventure travel. Now her mobility is limited, he’s down in the dumps, and tension has invaded the relationship.
Rolland’s advice: Figure out what you can do together and what each of you can do separately. He helped them see that they can share some cherished activities—reading books together and attending the theater—and add new ones, such as cooking. And the husband can still go biking, without worrying about making his wife feel bad, so long as they communicate openly about respecting each other’s needs.
Kivowitz has a practical suggestion: Create a list of everything that needs to be done in your household, then divide up tasks. If there are things that neither of you wants to do, brainstorm ways to find help.
In her video, she describes how she and her husband Richard did this. Kivowitz signed up for laundry, meal preparation, keeping medical records in order, researching her condition, and arranging help at home. Richard took on grocery shopping, getting medications, dealing with insurance, paying bills, financial planning, and working to keep the household afloat. Neither wanted to do housecleaning—a task that could be given to someone else.
Rolland tells of a woman with polycystic kidney disease whose husband helped administer home dialysis three times a week: “They would go into a room where all the equipment was kept, and, when dialysis was over, close the door and focus on being a couple.”
When Mastrogiovanni retired from an accounting job with the government, he and his wife bought a van with a ramp and traveled all over the country. When she could no longer feed herself, they’d still go out to restaurants where he’d feed her by hand—something the couple’s therapist had encouraged.
When joint activities are no longer possible, just being with someone can express closeness and solidarity.
Although Corcoran’s husband couldn’t talk, she’d sit with him and talk to him about what she was feeling: “He would put his arms around me, and I would say ‘I’m doing the best I can. I know this isn’t your fault, but it’s really hard.’ And I always ended up feeling better.”
Bocchiere, who’s chairman of the Well Spouse Association, said that when a spouse is seriously ill, “we lose our best friend, our love, our future. But your children, friends, relatives—they don’t get it.”
The first time he went to one of the association’s support groups and listened to other spouses tell their stories, “I was home,” he said.
For many people, meaning revolves around the notion of “fidelity”—commitment to their spouse, their vows and the “we” of their relationship, he said.
Corcoran converted to Catholicism the year that her husband was diagnosed and found solace in her faith and her church. “I kept praying that our marriage would have meaning,” she said.
Learning that people from her church saw her marriage as “loving” gave a deep sense of satisfaction. Ultimately, Corcoran came to understand “this is a cross my husband and I were carrying together.”
Kivowitz has observed a profound shift in herself and others, from “caregiving as a set of daily responsibilities” to caregiving as an expression of compassion.
“Measure success,” she said, “by how well you connect, love, and feel loved.”