The Rose family’s end-of-summer vacation was anything but relaxing when their trip to Lake Tahoe turned into a medical emergency. Rob, the father, woke up disoriented and confused, which is unusual but not completely unexpected, considering Rob is a quadriplegic. “It was really scary being away,” said Rob’s wife, Lisa, who had high hopes for this last getaway before the kids went back to school. It turns out that Rob had problems with an implanted pump that dispenses medication for his muscle spasms. He was okay, but had to spend his holiday in the hospital. “It was so disappointing. I felt bad for my kids,” says Lisa, who struggles to maintain a positive attitude as life continues to throw her curve balls. Dealing with disappointment, stress, and exhaustion is all part of the role Lisa now plays as a caregiver wife.
Lisa’s picture-perfect life came to an abrupt halt in 2003 when a freak accident caused the family’s SUV to roll over on the freeway, leaving Rob with life-threatening injuries. Rob spent months on a ventilator, battling infections, pneumonia, and severe lung complications. After years of rehabilitation, Rob regained some use of his upper body, but the former body builder and physical therapist is dependent on others to care for his daily needs. Lisa now shoulders the responsibility of taking care of her husband along with the tasks of running a household and raising children. She worries about her son and daughter having to deal with constant crisis. “I have to be the strong one, to put a positive spin on things to keep them okay — when I’m not okay,” says Lisa, who has to remind herself that she can’t do it all. “You can lose sight of taking care of yourself too. It’s like a car, you have to put in gas,” Lisa says.
The reality of living up to those marriage vows, “in sickness and in health, in good times and in bad,” is a tremendous challenge that Terrell Clima also knows all too well. Her husband, Ron, nearly died after crashing his motorcycle into a tree four years ago. Doctors and Ron’s own mother had given up hope, convinced his traumatic brain injury had left him a vegetable. Terrell’s strong faith and belief in her husband gave her the strength to fight for her partner’s life. “I refused to pull the plug,” says Terrell, who wrote a book that describes her ordeal, called “Don’t Pull That Plug.” Ron’s miraculous recovery, to the point where he can walk and talk again, is credited in large part to Terrell’s relentless pursuit to care for her spouse.
While Ron survived the motorcycle accident, he’s not the same person. “I love my husband very much, but sometimes I miss him — I miss my other husband,” Terrell says. Ron’s brain injury has altered his personality in the sense that he doesn’t speak the same way and is still learning basic life skills. There are times when Terrell returns home from a 12-hour shift as a nurse and has to clean up after her husband. “When I come home and he has had an accident, I have to get him showered. It’s a long day, it can be very tiring,” says Terrell. They each have adult-age kids from previous relationships who visit but rarely help with home care.
The couple’s relationship is different too, because Ron is now more like a son than a husband. “The sexual part has changed. It hasn’t diminished completely; I do the best I can,” Terrell says.
One of the toughest issues to overcome is redefining sexual intimacy and connecting as a couple. “It requires great creativity, vulnerability, and a commitment to each other. It’s about being open,” says Michelle Golland, Psy.D., a licensed clinical psychologist who specializes in marriage counseling. “Do what you can to preserve your husband-and-wife relationship — that needs to be a top priority,” says Lisa, who warns it can be difficult to maintain that intimacy if you become a full-time caregiver.
According to the Family Caregiver Alliance, 52 million Americans are providing home care to an adult who is ill or disabled. The vast majority of those caregivers are women. A number of studies show that women who care for their spouse are more likely than men who do the same work to suffer from anxiety, depression, and other symptoms associated with the emotional stress of caregiving. “I think what can happen is caregiver fatigue and compassion fatigue,” Dr. Golland says. There’s typically a grieving process that comes from the disappointment of what your life and marriage were supposed to be like. “It’s important to communicate with your partner because it’s a loss for them too,” Dr. Golland says. She adds, “If the depression sets in too far, you sort of give up on everything and spiral down a path of hopelessness where you don’t rebound.”
It’s critical that caregivers make alone time a priority — during which they’re not caring for anybody. Dr. Golland also recommends ongoing “mental health check-ups” for the entire family, even years after the onset of injury or illness. “It will be an ever-changing experience. Just because you’re okay with it now doesn’t mean you’ll be okay with it later,” Dr. Golland says. Caregiver wives can also experience a sense of hypervigilance, especially around their children. In turn, these kids see the world differently and often have to grow up faster. “We want our parents to be strong, and it’s frightening to see our parents in vulnerable positions,” Dr. Golland concludes.
Over the past six years, the Rose family has come to accept that Rob’s limitations are the new normal. But when Lisa talks about how her 12-year-old daughter’s relationship with Dad has changed, she starts to cry. “They don’t have the physical closeness they once had, because they can’t. It’s heartbreaking that Rob can’t pick Jayden up and give her a big hug,” Lisa says tearfully. She worries that her daughter is not that affectionate, perhaps a result of the accident happening when she was only 5 years old. Her 15-year-old son Connor has had to become the man of the house, by taking on more chores that ease the burden for his mom. Rob does what he can to contribute with the childcare and the finances. He learned how to drive with hand controls, which gives him more independence. Rob also started working at The Rose Center, a physical therapy clinic he and Lisa opened together in Redding, Calif., that’s aimed at helping other people with spinal cord injuries.
Lisa credits her close-knit family and friends for helping her through the darkest days. She also found comfort in the online community at Carepages.com. She suggests caregiver wives get hired help, if they can afford it financially. Lisa adds that most importantly, “remember to take care of you — because that’s what allows you to be a good wife and a good mom.”