Almost a year into caregiving my husband after his traumatic brain injury, we began to bicker about some mundane household issue I can no longer remember. I suddenly stopped, mid-sentence, a look of awe on my face. “We’re having our very first argument since you were injured!” I said. He looked confused. “And it’s so normal!” An argument had never felt so good.
For caregivers, the loss of that “former couple self” can be devastating. I’d been completely focused on Bob’s arduous recovery, watching like a hawk as he slowly rebuilt his ability to speak, read and write. While his determination was inspiring, there were moments when I felt more like his mother than his partner and wife. I worried about how we would keep that feeling of parity alive going forward.
Therapist Augustina Rueda, 54, from Rye, New York, has worked with couples navigating these thorny issues. “It’s so important to try to be present with the person you love beyond the circumstances of their injury or illness,” she says. “Love and romance are intentions, and we have to work to interrupt our minds from being in the driver’s seat during the day-to-day activities and create room to be partners, lovers and friends.”
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Work to create romance
When Clint Viebrock, a retired airline pilot and adaptive ski instructor from Telluride, Colorado, was diagnosed with pancreatic cancer, his beloved wife, Susan Viebrock, 66, became his caregiver and champion for the next two years, until he passed away from complications relating to his treatments in August 2021.
“Romance is a coefficient of love,” she explains. “And to the extent we were able, we set an intention to do every loving thing we had done before, modifying as the evolving situation demanded.”
The couple continued to honor birthdays and anniversaries as they had over the past three decades, by writing each other love letters and exchanging gifts. They also maintained an intense physical relationship that they modified through the rigors of chemotherapy and radiation treatments.
“The logistical details of being intimate were, to say the least, challenging,” explains Susan, “but we maintained physical contact in whatever ways we could. The goal was to honor our partnership and our (formerly) smokin’ hot, fairy-tale romance.”
When Clint became too weak to be physically active, the couple watched movies, held hands and “smooched.” Susan would read to her husband, and they listened to audiobooks together. “Our nonstop love affair ended as it began,” says Susan, “in deep attraction and respect.”
Susan describes the importance of dreaming about returning to Telluride together as a couple and for Clint to return to skiing, teaching and mountain biking. Even in the face of the daunting medical odds, the Viebrocks kept hope alive, reinforcing that positive mindset with doctors, family and friends who visited. “I believe dreaming that improbable dream motivated my love and helped him live longer,” she says.
Developing new skills
“Maintaining a loving relationship with a partner can be both a joy and a challenge at any stage of life,” says Judith Guberman, 63, a licensed clinical social worker in New York City. “Add an injury or a cognitive decline, and that shift to a caretaker relationship can change the existing balance and require both old and new skills.” She says that one of the ways to maintain partnership and intimacy is to find and cultivate a new type of connection that promotes affection, appreciation and a mutual sense of healthy interdependence.
Emily Emmons, 40, from Hilo, Hawaii, met her husband, John Emmons, 47, nine months after he returned from his second tour in Iraq. He had been an elementary school teacher but signed up for the military after the Sept. 11 attacks.
They met and married three months later, in 2007. “I knew he was the one, and he felt the same,” she said. He continued to work at the Department of Defense, staying connected to the war daily and traveling for work. When his constant migraines were finally diagnosed as concussive injuries from his deployment, John retired. Their relationship changed, and they went from hardly seeing each other to being together 24/7.
“I understood that this was our new normal and we couldn’t go back,” says Emily. “People don’t talk about the importance of needing to find a purpose and mission after life-altering illness or injury, but both the caregiver and the veteran need to have a purpose to help the couple’s relationship move forward.” Different doesn’t have to be bad, she says. “We’ve tried to shift our present to the now and figure out how we can make each day better.”
The Emmons bought property in Hawaii and created the nonprofit Ho’ōla Farms in Hilo, where they grow and share food with neighbors and connect with other veterans through the land. That conjoined purpose has helped them connect with their former selves and reminds them to stay focused on the present.
To the Emmons, kindness is a critical element of remaining a couple. “We made a deal with one another to speak kindly, and we don’t use harsh words. That helps us stay in a good place.”
Emily is also mindful of criticizing John. “If he makes a mess with a project, we laugh about it,” she says. “It’s important that he has the freedom to use his brain the way he wants and explore what he is interested in instead of being afraid to start something because he might fail or get criticized.”
When roles reverse
Joe Padgett, 74, and his wife, Susan Mead Padgett, 71, from Rye, New York, met in graduate school at Notre Dame. When Sue was diagnosed in 2019 with multiple myeloma, she lost the independence that had defined their relationship and began to live with fatigue and constant spine pain. “Sue was the person who did everything,” says Joe. “She taught school, made home repairs, raised the kids, could sew anything, and she kept all the finances. So it threw us for a loop when she became dependent on me. I retired when Sue was diagnosed, because now it’s my job to take care of her.”
Joe brings Sue flowers, and they make sure to thank one another for the little things they do. “We tell each other how much we love one another,” says Sue, “and hold hands when we can.” When she’s feeling well, they make a point of getting outside to walk by Long Island Sound. “We often spot a variety of birds and then try to identify them when we get home. It’s something we both enjoy together. Every time we go outside, we find something new that keeps us going.”
Keeping a connection to the end
In 2016, 40-year-old April Deen of Rye, New York, had 2-year old twins and an active life when she was diagnosed with stage 3 ovarian cancer. She lost her battle to the disease a year later, but during their time together, her husband, Adrian, 48, fought to try to maintain as normal a life as possible. “Our schedule was dictated by how April felt and the demands of two young children, but we used our many hours driving and waiting in the hospital to check in with each other. We went out for lunch or dinners afterward if she was able.” When April didn’t feel well, the couple relived their past experiences, reviewing their old photographs and reminiscing about fun and interesting events.
Acts of faith, love
Rueda also counsels patients that the caregiver’s burden is sometimes deciding how much to share with their partner. Some thoughts or feelings might be hurtful and may actually burden the partner further. “There are so many layers to the couple relationship, and it’s important to try to honor the intimacy and connection when you can.”
As a daughter, she observed her father caring for her mother for two years, and she was awed by the intimacy they shared as they prayed together. “It was transformative for my mom the way my dad would put his head on her, and they would pray the rosary,” she recalls. “I remember being struck by how they connected over their faith and that it survived the stress of her illness in the midst of losing all her independence and being bedridden.”
“The true value is the longing to be who we are rather than let ourselves and our relationships be defined by our circumstances,” says Rueda. “We need to be able to find ways to express desire and connection through acts of love.”
The Ties That Bind
Tips to maintain or add a sense of love and partnership in a caregiver relationship:
- Maintain visual reminders of better times, like photos or travel souvenirs.
- Sustain physical contact when possible. Even small gestures like holding hands or a shoulder massage can restore a feeling of connection.
- Continue to engage in activities that were enjoyable during the healthier years of the marriage.
- Support each other in pursuing independent interests.
- Keep an active social network. Make time to see friends, both as a couple and independently.
- Maintain close family relationships and allow extended family to help out whenever possible.
- Communicate about conflicts that arise, and reach out for professional help when those conflicts seem insurmountable.