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Opening Doors

Current and former caregivers find new career paths that tap into their life experiences

Three mornings a week, Karen Toenniss, 50, grabs the car keys and dashes off to her part-time position as coordinator for the MDA ALS Care Center at Houston Methodist Hospital. Nestled in her heart, she carries her husband’s memory. “Every time I save someone even a little bit of frustration as they deal with ALS, it feels like Mike is with me,” she says. 

Karen Toeniss, right, gained a passion for ALS while caring for her late husband, Mike, center.

Taking the reigns as the clinic’s coordinator wasn’t a planned career move, although the opportunity did acknowledge Toeniss’ passion, which grew from her life experience. “I left my job as a neonatal and pediatric intensive care unit nurse in 1995, two years after my husband Mike was diagnosed with ALS. I was his caregiver until he passed in 2006,” Toeniss recalls. “In 2007, I thought, ‘What am I supposed to do now?’ I had a 12-year gap in my resume.” 

That’s when a door swung open. Stanley Appel, M.D., co-director of the Houston Methodist Neurological Institute and Mike’s neurologist, phoned Toeniss. “Dr. Appel asked me to run his ALS clinic,” Toeniss says. “I had no experience managing a clinic, and I wasn’t planning a new career based on my years as Mike’s caregiver. But Dr. Appel said, ‘I can teach you how to run a clinic; I cannot give you the passion you have for ALS.’ That was 11 years ago.” 

Fitting the Pieces Together

Not everyone’s professional journey is like Toeniss’, with a door fortuitously opening at just the right moment. More often, if your caregiving experience beckons you to follow a new career, you’ll need to open your own doors. A good place to begin is with three key questions, suggests Kerry Hannon, an expert on career transitions and author of “Great Jobs for Everyone 50+.” Your answers will signal if the time’s right to make a change.

  1. Are you physically fit? “When we devote a large part of our life to caring for another, we sometimes forget to take care of ourselves. Potential employers want to see that you have the energy and endurance to get the job done,” Hannon stresses. Regardless of how strong your desire is to pursue a new calling, you may need to step back and buck up your stamina and health. Grant yourself this time.
  2. Are you financially fit? Do research on typical salaries in your chosen field or organization. Hannon suggests writing down a budget. “You want to be financially nimble, so you can do the job you want to do,” she says.  
  3. Are you spiritually fit? “This takes serious soul searching — especially when you’re coming off of years dedicated to caring for a loved one,” Hannon says. 

And don’t be surprised if your spiritual fitness takes sudden twists and turns, as John Mower, 56, explains. Mower’s story began in 2009, when his wife, Robin, was diagnosed with ALS. At first, Mower worked as a high school counselor by day and cared for his wife by night. In 2012, he retired to care for Robin full-time. After his wife passed in 2017, John felt a need to reach out to other families struggling with ALS — but then suddenly it became too painful.

“I know I can help people with neuromuscular disease, but after everything I went through, I suddenly wasn’t sure if I could be there emotionally,” John says. 

If John chooses to return to the ALS community, either professionally or as a volunteer, Hannon strongly recommends that he — or anyone in a similar situation — makes time in his life to take care of his spiritual fitness. “It can be religion, meditation, yoga, long walks with your dog, or anything that keeps you centered and replenishes your soul.”

Rethink Your Résumé

Jennifer Shumsky is a primary caregiver for her 17-year-old son, Xavier, who was diagnosed in 2006 with Duchenne muscular dystrophy (DMD). She also is a Personalized Access Coordination Team manager at the Little Hercules Foundation Duchenne Family Assistance Program, a nonprofit dedicated to improving the lives of those diagnosed with DMD.

Jennifer Shumsky (right), pictured with her family, was happy to find a new career helping other Duchenne families.

Shumsky’s path to this position meant a career change, and to promote herself she needed to take a fresh look at her professional skills.  

Shumsky began as a registered nurse (RN) and eventually joined a medical management company in Minnesota, where she served as an RN reviewing claims and prior authorization requests. In 2016, the family moved to Ann Arbor, Mich., and Shumsky set out to find a job. 

Writing a résumé posed a dilemma. She did not want to diminish her career as a nurse, but she did not want to remain in nursing. 

“During my years with the medical management company, I learned so much that helped me as a Duchenne parent,” Shumsky recalls. “I wanted to help families that didn’t have my knowledge base.” 

Shumsky revised her résumé to put less emphasis on nursing and more emphasis on the skills she learned, including a keen understanding of the equipment, medications, insurance and appeals specific to Duchenne families. 

The tactic worked, and as Shumsky says, “I’m finally able to put all my skills together and use them to help families living with Duchenne.”

Follow Your Passion

Sometimes it feels as if your path is chosen for you. If caregiving helped you find a new focus for your life, that deserves top billing in your résumé and during interviews.

Take 42-year-old Erin Hill, who is area director of MDA South Dakota. Her career choice evolved after her father was diagnosed with ALS in 2011.

“I shared caregiving with my family, and after Dad passed away in 2012, I felt a pull to help the neuromuscular disease community. I wasn’t ready to stop fighting back against ALS,” Hill says.

Erin Hill enjoys spending time at MDA Summer Camp as part of her role with MDA South Dakota.

As Hill settled into her position, she met several co-workers who had also lost someone to neuromuscular disease. “Like me, they were pulled to MDA, so they could continue the fight,” she says.

Nearly four years into her job, Hill says her drive has only grown stronger. “My goal is to help raise the research funds so we can find a cure as soon as possible. Then I’ll be out of a job!” she says with a chuckle — followed quickly with a heartfelt sigh. “I can’t wait for that day.”

Fill the Gap

When you’ve been a caregiver for a loved one, you probably took time away from active employment. But don’t think of it as a gap in your résumé, urges Kerry Hannon, a career transitions expert. Instead, think of it as time when you developed new skills that will help you in the professional world.

Here are two strategies for building a solid résumé:

1. Express experiences as professional skills.

“Your mission as a job seeker is to drill down into the business side of caregiving,” Hannon says. That means translating your duties into business terms whenever possible. For example, you didn’t help a child get a wheelchair; you served as a patient advocate, spearheading a complex negotiation process to secure needed equipment.

At different points during your caregiving experience, you were likely also a project manager, financial manager and personnel director as you hired and oversaw caregivers and medical experts.

2. Emphasize active learning.

“Employers want someone who’s not stuck in their ways and is an active learner,” Hannon says.

That makes education and certifications strong résumé features — but look deeper, Hannon urges. People with experience in caring for someone with a neuromuscular disease likely have many experiences that count as active learning. For example, although John Mower left his job as a high school counselor in 2012, the years when he was full-time caregiver to his wife, who had ALS, were packed with impressive active learning.

“While I cared for Robin, she and I were heavily involved with MDA and the ALS Association. We raised funds for research, Robin spoke at MDA gatherings, we attended ALS walks and we spoke about ALS to first-year medical students at the University of Toledo Medical Center,” John says. “For five years, we traveled across the United States in a motor home, raising awareness, attending ALS-related events and helping others diagnosed with ALS.”

Mower’s experience demonstrates an adaptability and willingness to learn that go well beyond classroom walls. After all, showing can be much more effective than telling.

Caregiving and Employment in the United States

  • Approximately 43.5 million caregivers provide unpaid care to an adult or child.
  • More than 75 percent of all caregivers are female, and they may spend as much as 50 percent more time providing care than men.
  • About 17 percent of full-time workers act as caregivers.
  • 39 percent of caregivers leave their job to have more time to care for a loved one.
  • 34 percent of caregivers leave a job because their work does not provide flexible hours.

Sources: National Alliance for Caregiving, AARP, Institute on Aging, Gallup-Healthways

Thank You, Caregivers!

MDA would like to recognize all family caregivers for your devotion and commitment. Thank you for all you do to empower and support adults and children living with neuromuscular diseases. MDA is here to help empower and support caregivers as well. Visit MDA’s Caregiver Resources page to find guidebooks, articles and online resources.

Donna Shryer is a freelance writer in Chicago.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.