After 17 years of depending on his mom, Margaret, for daily care, Jake French suddenly found their roles reversed. A serious knee injury and four unexpected ER visits sidelined Margaret, and Jake, 39, had to step up — caring for his 70-year-old mom while juggling his own complex needs as a C6 quadriplegic, including help with his bowel and shower care. He had handled temporary lapses in her care before, but this string of events — and her growing reliance on him — forced him to rethink their setup.

“I realized once things calm down here in the next month or so, Mom and I need to figure out some more processes so that as life changes, it’s more of a smooth hand off,” he says. “It’s so hard to see someone slow down and hurt, but then selfishly it turns towards yourself. I found myself wondering, shoot, how am I going to do this?”

Lazaro Gutierrez, a C4-5 quadriplegic, faces the same tough questions as he prepares to transition away from relying on his mom, Teresa, who has supported him as his primary caregiver for over three decades.

“I’m very terrified,” says Lazaro, 54. “Having my mom as my caregiver all these years has been great, but the ball has been rolling, and I’m trying to deal with it now, a little too late, and I’m hoping it doesn’t roll me over.”

As a C5 quad who once leaned on his parents after his spinal cord injury, I remember the pressure of that looming ball. While hiring new caregivers may sound like an obvious solution, the emotional, financial and logistical hurdles make it anything but easy. Changing long-standing caregiving routines — especially those built on deep, personal bonds — is hard.

The ‘Obvious’ Choice

There was never any question about who would assume the role of primary caregiver when Jake was paralyzed at age 23 in 2008. Margaret had just retired as a teacher and had experience caregiving for her father. “We never really even talked about it,” he says. “We lived in a ghost town of 600 so far out in the middle of nowhere. It would have been really hard to find anyone. And Mom was there, like, ‘Hey, I can do it!’”

Lazaro didn’t exactly welcome Teresa’s hands-on involvement in his care as a newly injured 18-year-old, but he adapted quickly. “It just happened. It’s almost like, this is what it is. She took over the role. I accepted it, and I moved on,” he says. “Then it became the norm, like it was supposed to be that way.”

Teresa, 69, has been with Lazaro through all the stages of his life post-SCI, not only covering the majority of his care needs, but his emotional needs too: the grief after his injury, finding the motivation to return for his GED and college degrees and eventually marrying the love of his life.

Each milestone required both mother and son to adjust. “I don’t want to say it’s been easy or perfect, but it has worked,” says Lazaro. “My wife has adjusted, my mom has adjusted, and I have my role.”

Navigating the balance between caregiving and family became even more complex when Lazaro married and became a father to his wife’s two children. “It was like, OK, you got me, and my mom comes with me,” he says. Teresa lived separately and came to help with Lazaro’s care. “Not having my wife have to be a full-time caregiver helped our relationship, and with all the experiences … looking back, I’m not sure it would have lasted as long as it has if my wife had to do all my care.”

Jake and Margaret’s relationship has also evolved the longer they’ve worked together. Two years after his injury, Margaret became his business partner when he started a career as a motivational speaker. In addition to providing the assistance he needed to travel, she helped him manage his events and hone his craft. “She was a godsend,” he says. “Logistically I couldn’t have done it without her.”

Unlike Lazaro and Teresa, Jake and Margaret live together. The convenience can be good for caregiving and camaraderie, but tricky elsewhere. “It definitely was a bit awkward trying to date at first,” says Jake. “I’ve always just tried to address it right out of the gate, like, ‘My mom and I are an awesome team.’ … It’s no more awkward than some of the other conversations about being a quadriplegic.”

Maintaining the Balance

Lazaro has weathered plenty of challenges in the 36 years since his injury, but the past six have proven especially tough. As he, his wife and Teresa age and face new health issues, maintaining their delicate balance has grown harder. “My wife does a lot to help, but because of health issues and full-time employment, anything with heavy lifting tends to fall on my mom,” he says. “I see the frustration and the stress it’s bringing my mom — and the stress it’s causing her physically.”

A recent bout of back pain for Teresa brought the issue to a head for Lazaro. “It’s hard. She said to me, ‘I can’t do this anymore,’” he says. “I cried because I’m like, man, I can’t do anything about it. I’m breaking my mom down where she doesn’t even have a life.”

Margaret’s string of ER trips and recent health setbacks have been keeping Jake awake at night worrying about their mutual health, finances and what the future holds. “Our relationship for the first dozen years was easier than it is now,” he says. “She started having health issues about five years ago, then she was good for a couple years, and then it started again this year. It’s also becoming more stressful, because you’re tied to someone in more than one way.”

Their financial connection is especially difficult to unravel. Margaret depends on the state and Medicaid money she receives as Jake’s caregiver, and because they live together, Jake does too. “We’d love to hire other caregivers,” says Jake, “but for every hour I pay for one, that’s money directly out of our pocket. Our finances are essentially tied.”

Lazaro and Teresa’s finances are less entwined, but with limited hours covered by the state, Lazaro has to be judicious. “I don’t have the funds to be able to just call someone and pay for help,” says Lazaro.

When Jake is forced to hire someone to fill in for Margaret, as he was during her recent setbacks, he makes sure they understand that he needs help fulfilling the household tasks his mom usually does, along with his caregiving necessities. Inevitably, more of the chores fall on his shoulders. He is glad to help but knows there will be an added cost because of the neurological pain he battles constantly. “I only have so much time I can sit, small blocks of time the pain allows me to ration throughout the day,” he says. “I’m happy to do more for myself and my mom, but it takes me a lot longer and leads to more discomfort.”

During one of those fill-in stints, he injured his shoulder. “After going through this, I also see how much she helps me just prevent injury,” he says. “She touches literally every aspect of my life.”

Despite the complexity, both men know that they need to work with their parental caregivers to find a new balance that allows them all to lives their lives to the fullest. After numerous hires that didn’t pan out, Lazaro has found a reliable caregiver to help him at night. He’d like to find a competent caregiver who could handle his morning care to free up Teresa from the overwhelming responsibility and allow her to live her own life without worrying about his needs.

With her recent recovery, Margaret is eager to return to caregiving, and Jake appreciates having her back. But he’s also thinking differently. He’s turning down trips he would have jumped at before, afraid that overcommitting will wear her down again. “I’m really trying to place myself in her shoes and just temper how much I ask for,” he says.

Additionally, Jake and Margaret are reevaluating everything, from how Jake could travel without Margaret, to where they live and what their living situation looks like. “It’s scary,” says Jake. “I’m nervous. I don’t think I realized how much she does until she couldn’t do it anymore.”

Finding Solutions

Changing routines and managing caregivers are two of the most difficult tasks to master when it comes to living independently. Figuring out how to transition from aging parental caregivers combines both of those obstacles and adds in the emotional complexity that comes with family. In short, it’s frickin’ hard.

The more time we spend working intimately together, the stronger the connection becomes — and the more difficult it is to sever. For good and bad, our parents know us more intimately and more deeply than any hire can.

“My mom allows me to feel like a man,” says Lazaro. “I feel like I have my arms and legs all the time around me, because as soon as I need something, or as soon as I think about it, she will be there to help.”

The idea of replacing something that you know can work with a series of unknowns is daunting. “Having one consistent person has been really good,” says Jake. “It takes so much time and energy to train new folks, and it can be dangerous if they don’t know what they’re doing.”

Despite constantly thinking about and discussing the transition with my parents over the decade they helped me as caregivers, I ran into a number of problems including multiple flaky caregivers and one who packed up all her belongings and ghosted me in the middle of the night. There were moments where I wondered whether I’d ever establish a sustainable caregiving setup, but I always knew that I had to keep trying. I owed it to my parents, and I owed it to myself.

Having a caregiving setup that allows me to live my life the way I want is invaluable, but seeing my parents enjoy their golden years without having to be intimately involved with my care is right up there in terms of value.

Jake and Lazaro are confident they will figure out a way forward, and both realize how fortunate they are to have such caring and supportive parental caregivers. “I know not everyone has that experience with family,” says Jake. “I definitely appreciate that and don’t want to take advantage of it.”