6 Life Lessons From a Daughter Caring for Her Mother With Multiple Sclerosis
At some point in our lives, most of us will find ourselves working as a caregiver. It's a job that requires a unique set of hard and soft skills: physical strength and stamina, scheduling, problem-solving, communication, patience, and empathy, to name a few. It's rewarding and exhausting, and it usually comes later in our lives, when we have children or parents with medical conditions. But for Dr. Lori Lebson, the caregiving stage came much earlier than she expected.
When Dr. Lebson, the head of US Medical Affairs for neurology and immunology at EMD Serono, was 18 years old, her mother Isabelle was diagnosed with multiple sclerosis (MS). The news was life-changing; Dr. Lebson forged her career around Isabelle's condition. She became an MS researcher, identifying new potential MS therapies and educating members of the scientific community. She became a caregiver, too.
"It shaped my whole future," Dr. Lebson tells FIRST. "I really wanted to know everything about MS and help her and her journey. She helped me just as much [as my education did]. I saw what it was like to go through MS from a patient perspective."
Dr. Lebson's new life journey came with steep challenges. She struggled to care for her mother, her children, and herself while handling a demanding career. When Isabelle took a turn for the worse and spent months in the hospital, things hit a breaking point. "I was torn between a high pressure role within my organization, wanting to change the world for MS patients, and wanting to show up for my parents and my family. And I will say I don't think I did them that well. So for me, it's very important to speak up for caregivers."
Now, Dr. Lebson is on a mission with Embracing Carers, an EMD Serono initiative to support caregivers around the globe. Below, she's shared six life lessons that she learned along the way — in hopes that her words of wisdom will help other caregivers on their journeys and let them know they're not alone.
Remember you have the right to advocate for your family member.
Dr. Lebson acknowledges that MS is a very difficult disease to diagnose. Still, doctors sometimes didn't listen, and she and her family found the strength to advocate for Isabelle when that happened. "I have to chuckle sometimes, because before my mom got diagnosed, she once went into the hospital because she couldn't feel from her waist down," she shares. "The neurologists looked at her and said, 'I think you're having an empty nest syndrome,' and sent her home. Just didn't believe her, first of all, because she was a woman."
Dr. Lebson and her family knew this couldn't be right, and they advocated for Isabelle. "Thankfully, there was another physician who kept her in [the hospital]," Dr. Lebson explains. "So, she ultimately ended up getting her diagnosis."
Let go of the guilt, and take some time for yourself.
Caregivers know this phrase, but it's important to repeat it often: You can't pour from an empty glass. In order to care for others, you must first care for yourself. "My only outlet was running," says Dr. Lebson. "That was my place where I could go clear my head, and try and process everything that was going on ... For me it was running, but for you, it might be painting, or reading, or volunteering."
In other words, that "me time" can take a lot of forms — from getting a massage to watching TV. Don't let others make you feel guilty for how you choose to spend that time. It's yours and yours alone.
Find your support system.
"I wasn't as aware of all the different opportunities and places where I could have reached out for help," says Dr. Lebson. "If I could go back, I would tell myself to find either a support group or a person or I knew — a means of having those open, shared conversations to discuss the challenges. Bringing together caregivers who are going through similar experiences is important, even though it may not be the same exact disease that you're helping manage."
"As women, we don't like to put a burden onto somebody else," she continues. "We have to give ourselves permission to prioritize ourselves sometimes, and I think [one of the keys to that is] finding those people who allow us to do so. People who say, 'It's okay. Go take an hour to go run, read a book, or take a shower.' We need to be more vocal in supporting each other and not saying, 'I can do it all.' Because we can't do it all."
Dr. Lebson suggests that caregivers take advantage of the resources offered at EmbracingCarers.com. "You can get access to support, advocacy groups, experts, advice ... I'm truly humbled to work for a company that is putting caregivers at the forefront."
Hone in on what brings you joy.
"For me, it was really important to make sure that I found joy in those moments with my children," says Dr. Lebson. "For long-term diseases, being a caregiver is a long process. As a result, it's so important to find that balance, so you don't look back and say, 'I wish I had spent time doing this.' Ensure that you're finding that joy, whether it's your children, an extracurricular activity, or a social group."
"I know you're thinking, 'how can I add one more thing on my plate?'" Dr. Lebson adds. "But it's important to think of the full picture."
Find your resiliency.
One of the most important things Dr. Lebson wanted to teach her children — when they were young and watching their grandmother's condition worsen — was resiliency. That meant teaching them how to process their emotions so they could recover from the challenges life threw at them.
"I gave them the space to cry, and to have a very honest conversation about how we deal with our emotions," she says. "We don't want to just sweep things under the rug. And I help them understand that my mom's legacy is to change the world, even if it's just for one family ... There are so many things we can learn from challenging situations, but to do that, we have to give ourselves and our children the space to express those feelings, and learn how to turn them into a positive."
Embrace the rewarding aspect of caregiving.
Though caregiving is a tremendous undertaking and often seen as a burden, Dr. Lebson reminds us that it's a rewarding and beautiful experience. "My mom was my absolute best friend," she says. "She taught me positivity, resilience, the importance of showing up every day, making the most of every moment you have in life, and choosing the things that are so impactful. She was a beacon of light."
"I remember, when she had retired from teaching, she brought up three people to be part of her recognition. One of those people was the school janitor. And I remember him, standing at her funeral, saying, 'I have never felt so included and loved.' So, despite the most challenging health life, she never lost her spark and her joy and her love. And I can take that lesson and lead my life that way.
"How many millions of Americans have shifted their lives, because they've been inspired by someone they've been privileged to be a caregiver for? How much have those people we've cared for shaped who we are, in a positive way? I love to look at [caregiving] as a ripple effect of change, because we are humbled and privileged to be caregivers."