Editor’s note: This article is part of a year-long project on aging well, planning for the changes aging brings and shaping how society thinks about aging.
Life can be overwhelming when one member of a couple has a chronic illness and the other member is relatively healthy. Obvious challenges face the ill person. And the healthier partner often faces less visible challenges.
Next Avenue asked couples how they’ve dealt with chronic illness in one partner, posing our question through the Public Insight Network, a public media project inviting users to share their experiences for articles.
The couples who answered our query told us that making this difficult situation work takes love, mutual devotion, acceptance and a positive outlook. They also credit help from friends and family, medical professionals and social services.
(MORE: Making Our Plans For Growing Old)
A Privilege to Provide Care
David Steiner, 78, took care of his wife, Mary, who was confined to a wheelchair for 12 years, and says it was a privilege to do so. “I am grateful for the time we had and the help I had from all of the health care professionals over those years,” Steiner, a retired Air Force Lt. Col. from Thornton, Colo. wrote. “I learned from her and from them how very precious life is.”
Mary Steiner died last year after suffering complications from a stroke several years earlier. Before her death, Steiner helped her maintain her independence, moving to a wheelchair-accessible condo and finding ways for her to remain as mobile as possible, even after she became dependent on oxygen.
“I found that I had very little time for myself and that the time I did have was precious,“ Steiner wrote of becoming a caregiver for his wife of 53 years. “I found ways to increase the time by using as many labor-saving devices as I could afford — better cleaning tools, more wastebaskets, organized work spaces, drawers, cupboards and closets.”
Needing Support To Make It Work
Deborah Ruppert, 62, copes with three conditions, including scoliosis and injuries to both ankles, that limit her mobility. Her husband handles the household chores and prepares meals. On good days, Deborah can sit at a kitchen stool to help prep food. When she can’t be in the kitchen, her husband brings her tastes and smells so she can assist with the seasoning.
The couple doesn’t have a car, so they rely on the Red Cross Ride Connection and friends for transportation. That has been key to maintaining a healthy marriage. “Otherwise, we would be together All. The. Time. And there would be headlines,” Deborah jokes.
“There is NO good way to do this in the current nuclear-family-oriented society we have,” she wrote, adding that she believes a village approach would help partners share the burden of caregiving better.
“There are very few support systems for caregivers, especially if you have even barely-above-poverty-line income,” Deborah wrote. “And navigating the ins and outs of insurance (and) social services at all levels is mind-boggling.”
Paying it Forward
Brie Stoianoff, 36, cares for her husband, Kevin Byrne, 42. He is a retired Army helicopter pilot who has multiple sclerosis. Both work full-time, but as Byrne’s disease progresses — he now walks with a cane —he may not be able to continue working.
While it’s stressful to raise a four-year-old, deal with MS and work, Stoianoff and Byrne have found positive ways to respond to Byrne’s degenerative illness. They’ve raised more than $200,000 for MS research through Bike MS and Byrne participates in a clinical trial for a drug called Tcelna. Kevin also blogs for the Veteran’s Association MS group.
“It’s our way to pay it forward and back for all of the support Kevin received when he was first diagnosed,” Stoianoff said.
Caring for the Caregiver
Often the partner who is ill recognizes the needs of their caregiver/spouse to find time for themselves and to pursue separate interests.
“It is important for the ill partner to inquire about the non-ill partner’s well-being,” wrote Susan Moskwa, of Seattle, Wash., whose depression and anxiety keeps her and her husband from participating in many activities together.
“Sometimes my (husband) says he feels bad about bringing up his problems, either because they pale in comparison to my problems or because he doesn’t want to put an additional burden on me.” she explained. “It’s important to establish a baseline of taking care of each other equally, even if one partner needs taking-care-of beyond that baseline level,” Moskwa wrote.
Manage Different Activity Levels
Finding activities to enjoy together when one member of a couple is not as mobile did not seem to be an issue for many couples who sent their comments. Most found that watching TV, listening to music, sharing meals and having friends and family to visit afforded quality time together.
And most had negotiated ways to exercise and go places when one was not as mobile.
“I try to encourage my wife not to be excessively limited by my limits,” wrote Robert Atwood, 62, of Rutherford, N.J., who is slowed by weakness and fatigue. “We both enjoy nature and hiking but I must go much slower, so we will go out with other partners so she can get her exercise and I can go slower.”
Judith Tramachi, 57, of Vienna, Va., has spent many years at home and in bed due to Lyme disease. She and her husband have found that cruises are something they both enjoy, with a range of activities and time for rest.
Stay Positive and Look Forward
Couples who managed health differences best looked forward, not back.
When asked what he wants others to know about being in a relationship where one partner has a chronic illness, Atwood said: “Our new reality is our new reality, and we try to accept that and enjoy the activities we can without regrets for what used to be.”
“I sometimes have moments when I think I might have done more or better,” Steiner wrote on the one-year anniversary of his wife’s passing. “Could I have done better? Yes. But I can’t change the past. Rita Mae Brown says happiness consists of someone to love, something to do and something to look forward to. I’m a happy man.”