In Sickness, in Health and in Love

According to the National Family Caregivers Association, more than 50 million Americans care for loved ones with a chronic illness, disability or old age.

Caregivers assist people with neuromuscular disease in accomplishing many tasks of daily living. From eating to grooming, dressing to transferring, traveling to sleeping, and more, caregivers truly make life fully possible.

While it may be both physically and emotionally stressful, caregiving also can be a rewarding vocation that strengthens family ties and relationships. For some, their caregiver is also their romantic partner. Here’s the advice of a handful of couples on how to keep the romance alive in a relationship when one spouse or significant other is also a caregiver.

Focus on the relationship

Scott Stafne says life with ALS (amyotrophic lateral sclerosis) is extraordinarily hectic, but also rewarding and focused. He and his wife Kirsten have been living with his disability for five years of their seven-year marriage, though he jokes that his wife has been taking care of him since the day they met nine years ago.

Kirsten and Scott Stafne with daughters, Miranda and Eva

Stafne, 37, has a variety of caregivers assisting him daily at their home in Woodbury, Minn. A home health aide is at his side 30 hours a week. His dad drops by often to lend a caring hand. A Share the Care network (an organized group of volunteers) is in place to help the family with household tasks. But at the end of the day, Kirsten is his loving, designated full-time caregiver. She also works full time and cares for the couple’s two young daughters.

This strategy of having many caregivers is necessary for a variety of reasons. Allow others to help, especially with hygiene and toileting, because “it’s hard to feel romantic after wiping someone’s rear end,” says Stafne. Outside caregivers also allow the couple to “purposefully schedule time with each other and no one else — preferably out of the house — to focus on one another without the pressure to be productive in any way,” he says. That means no discussions on household tasks and bills. Just time to focus on their loving relationship.

When assistance is needed from his wife, Stafne looks at caregiving tasks in a different light. “Consider it time together that you might not otherwise spend,” he says. “Focus on normal chit chat instead of where the other person’s hands happen to be.”

He and Kirsten also seek to find humor in every situation to cope and help lighten the mood.

In all relationships, disagreements understandably happen. The Stafnes say they “focus on building relationship tools to resolve them respectfully.” They try to follow some ground rules.

“We avoid tackling problems at times when stress levels are usually high and energy low, such as right after work or right before bedtime,” says Stafne.

Marrying a real giver

Kim Faenza, a 37-year-old from Gainesville, Fla., has relied on caregivers much of her life — she’s had type 2 spinal muscular atrophy since she was 16 months old. Though comfortable having parents as caregivers, she says relying solely on friends or even a spouse is awkward at best. But life changes and so do caregivers. How do Kim and her husband Claudio manage the caregiving aspect of their marriage?

“We feel completely comfortable with each other,” says Faenza, who works in marketing and public relations at a health care system in north central Florida.

When you rely on a significant other or spouse, she advises, “try to psychologically separate the working relationship with the romantic side.” She reminds herself that Claudio loves her for who she is — a woman. She happens to need physical assistance, and he is her willing and loving caregiver.

Humor also plays a huge role for the couple, who have been married for almost a year and a half. Kim and Claudio laugh their way through many awkward caregiving moments, making their relationship stronger. Faenza also believes it’s important to be emotionally strong. It helps her avoid feeling embarrassed or sad when faced with the reality that she needs help with some physical aspects of her daily life.

The potential for caregiver burnout is real; Faenza has seen it with previous caregivers. “If you start feeling like you’re a burden then you need to openly communicate with your caregiver,” she notes. “Make sure you’re on the same page with them.”

“I married a real giver,” Faenza says. Still, to avoid burnout, she puts herself in Claudio’s shoes and tries not to ask too much of him. “Make sure your requests are realistic and not overbearing,” she advises.

If at all financially possible, Faenza recommends not having a spouse or significant other as a full-time caregiver. She feels fortunate to have a caregiver come three times a day to help her with bathing, grooming, dressing, bathroom breaks at work, and evening meal preparation. This helps Kim maintain independence and leaves time for the couple to be husband and wife like any other couple. Claudio does help with Kim’s bedtime routine during the week and occasionally handles everything on weekends.

Faenza says that marriage involves a lot of give and take for both partners. As far as romance is concerned, “We get creative,” she says. “I try to create romantic situations that don’t involve him having to physically help me do something.”

Keeping expectations realistic

Jeff Lester and his wife Lisa celebrated their 15th anniversary in late 2009. He has needed a caregiver due to ALS for the last 13 years. For that, his devoted wife has come to his aid.

Lester, 43, emphasizes that, although his wife has graciously been his physical caretaker, “too many times those of us with physical disabilities allow ourselves to fall in the trap of needing emotional caregiving as well.” That’s a path Lester is cautious not to follow.

Jeff and Lisa Lester with daughters, from left, Emily, Kelsey and Jordan.

“It makes you a victim, which is unfair to your caregiver and most of all yourself. This is especially so when trying to maintain an intimate relationship,” says Lester who lives with his wife in Lebanon, Mo.

The father of three girls born after he learned he has ALS, Lester follows other useful principles that have allowed the couple’s intimacy to thrive.

“When a physical disability enters the picture, don’t allow it to become the central focus of your lives,” he says.  “It has to become a part of your life no different than doing dishes or the laundry.” One way the family does that is by simplifying Lester’s care. Their house is their home, not a mini-hospital. Though he uses a trach ventilator, he still sleeps in the same bed with his wife.

“Once you minimize the disability’s impact then you pursue the relationship and passion with the same zeal and understanding as you would under normal circumstances,” he says. The couple deals with issues — good or bad — as they come up. It’s part of being in a healthy relationship.

Another strategy Lester uses to maintain a healthy marriage is keeping his expectations in check. He doesn’t expect his wife to treat him differently just because of his disability. “I think that one of the great strengths of our relationship, and something outsiders don’t understand, is that Lisa doesn’t treat me with kid gloves, nor do I want her to,” he says. For example, he doesn’t expect a gourmet meal when Spaghetti-Os were fine before his disability came into the picture.

“The most important thing is that I am deeply in love with Lisa,” says Lester. “She just happens to be my angel who also stuck with me through some difficult circumstances and helped me find a ‘normal’ life despite them.”

Lester shows his passion for Lisa each day in a variety of ways. He sends her flowers, gifts, love notes, and delivers subtle and not-so-subtle mischievous looks when “she’s looking particularly sexy, which is most of the time,” he says.

“She’s my passion and her love drives me each day. I truly am a lucky man because I’m married to my dream girl,” he says.

David Von Hatten, 45, is a freelance writer living in Austin, Texas, with his wife, Kathy, and 4-year old son, Simon. David has spinal muscular atrophy.