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For a dozen years, Larry Bocchiere didn't find it 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 says. “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 took 24 medications each day and was rushed 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,” said Bocchiere, now 68. His wife died in 2013.
Marriages are often shaken to the core when one spouse becomes sick or disabled and the other takes on new responsibilities.
"You have to rewrite the relationship's expectations. And the longer you've been married, the harder that is to do,” says Zachary White, an associate professor of communications at Queens University of Charlotte who has written about the transformation from being a loved one to caregiver.
Compared to adult children who care for their parents, spouses perform more tasks and assume greater physical and financial burdens when they become caregivers, experts say. Symptoms of depression as well as strains on relationships are more common.
Complicating these issues is isolation. “We often hear about family members who won't get involved or are overly critical of the well spouse but never pitch in or visit,” says Robert Mastrogiovanni, 72, president of the Well Spouse Association, which helps people connect with support groups. “And then there are lifelong friends who drop out of the picture."
Most of the time (55 percent), older spouses are caregiving alone as their husbands or wives come to the end of their lives, without help from their children, other family members, friends or paid home health aides, according to a study published this year in the journal Health Affairs.
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.
Or spouses can 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 a degenerative neurological disorder. It took five years for Vincent to get a diagnosis. During that time, Corcoran said, “I felt like I was married to 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.
Get help and advice on caring for a loved one at home with AARP's Care Guide
Couples need to face what is being lost as a result of illness and, at the same time, focus on what remains intact.
John Rolland, an adjunct professor of psychiatry at Northwestern University's Feinberg School of Medicine, counseled a couple in their early 70s. Both were working when the wife started having symptoms of Parkinson's disease five years ago.
In retirement, the couple had planned to do a lot of biking, hiking and adventure travel. Now that 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.
Divvy up responsibilities
Couples need to retain a sense of balance in their relationships. Often this is threatened as one spouse becomes less able to function and the other takes on more responsibilities.
Barbara Kivowitz, who suffers from chronic pain, has a practical suggestion: Create a list of everything that needs to be done in your household, then divide tasks. If there are things that neither of you want to do, brainstorm ways to find help.
Kivowitz signed up for laundry, meal preparation, keeping medical records in order, researching her condition and arranging help at home. Her husband, 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.
Include the ill spouse
Avoid assigning the ill spouse to a passive role of being “cared for.” To the extent possible, set boundaries around caregiving and maintain reciprocity in the relationship.
Rolland tells of a woman with 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 federal government, he and his wife bought a van with a ramp and travelled 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.
Expand your network
If friends and family members don't seem to understand what you're going through, find people who do. Well and ill spouses may need to find support in different places.
Bocchiere, who chairs the Well Spouse Association, says 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.
Kivowitz has seen 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 says, “by how well you connect, love and feel loved.”