Relationships

I felt like I was living a secret life while caring for my sick mom

Susy WulfFebruary 11, 20227 mins read

My mom was only six years old when she was diagnosed with multiple sclerosis. She broke the news to me one day by sitting down in our living room in Philadelphia. I was terrified when she cried. I didn’t know what the news meant for her and for me.

Mom’s mobility quickly declined after her diagnosis. She struggled to balance and walk long distances at first. She was using a cane and then a scooter by the time she was in middle school. She eventually used a motorized wheelchair a few years later. I was embarrassed to see her with a group of parents at school or in my dance school. You don’t want anyone in your family to be different at that age.

Mom and I have always been close. But, when I went to college in New York, she and my stepdad moved to Washington, D.C., we became even closer. She scheduled her appointments for fall in my absence, so I flew home every other week. I have always been loyal to my mom and protective of her decisions. I would ask all the doctors questions. My sister, step-dad and stepsister all play a significant role in Mom’s care. My relationship with mom was so strong that I would gladly go home to spend time. She was and is still my best friend.

“I had a secret life. Most days, I would sneak out of the office during lunch to help my mother.”

Mom was unable to take care of the everyday tasks we all do every day, such as taking a bath and preparing meals. I didn’t think about how I felt when I was helping her. I was focused only on the task at hand. It was so disappointing to see her struggle physically. Her mind was sharp, and she is one of the smartest, most wittiest, and most curious people I know.

After graduating from college, I returned to Washington, D.C., where I spent four years helping my mom and living at home. I did not anticipate how lonely and exhausting those years would be. My business career was my first. I wanted to excel at my job. However, I felt a deep sense of duty to my mom. This is how I secretly lived: I would often sneak out of the office during lunch breaks to help mom. Although I didn’t know it, our relationship had changed from the mother-daughter normal dynamic. I was the one who took care of her and she relied on me. I felt that I was unable to ask for the help or be vulnerable. She needed me to be positive and strong for her.

My Secret Life

My mom was ill, and my friends were aware of it. But they didn’t know the extent of my involvement. My mom was not comfortable talking about the things that I was experiencing with me over wine with my friends. I was not trying to be downer, and was afraid they would see me differently.

I was offered a job at Los Angeles in 2006. It was a difficult decision that I made. Although I wanted to improve my career, it felt like I was abandoning my daughter and her duties. My mom cried when I told her I was moving and suggested she get an in-home aide. She replied, “You’ll never visit me.” It broke my heart. I told her, “No, I won’t come to visit you often, and we will go back to being mother-daughter.” We found a woman who could help her and she moved to LA. In LA for years, and later in business school, when there was any concern about mom’s wellbeing or health, I would jump on the first plane I saw. I had to fly red eye, change plans and miss my first year of business school exams.

I felt so guilty after I moved. While I felt obligated to make a career out of my life, I also felt the need to take care of my mother every day. I felt constantly torn, and couldn’t do both. Los Angeles was the place where I met a therapist. She helped me to see that I had to live my life. That’s what my mom wanted.

Even though I didn’t live at home, I still helped Mom in many ways. For example, in the last year I spent many hours calling her insurance company and talking with her doctors. I also flew from New York to Chattanooga to pick up her belongings. For several months, I flew home every weekend for work. But I felt that I could have done more.

A Company for Caregivers

For a while, I had thought of a company to help families like ours with their responsibilities. The idea came out of a desire to share some of the research and have someone do the calls. Mom would receive better care. Although I was aware of the problem, I wasn’t sure how to solve it. 2014 was the year I decided to quit my job as a media/adtech executive and focus solely on solving it.

“The United States has more than 60,000,000 unpaid family caregivers.”

In that same year, Kevin Roche, my cofounder, and I founded Wellthy. My family was not the only one experiencing this. There are over 60 million family caregivers who don’t get paid. Many of these people struggle to navigate complex healthcare systems while maintaining a job or raising their families.

Wellthy was created to connect families caring for an elderly or sick loved one with a care coordinator. The coordinator will take over all the administrative and logistical tasks, making it easier for the family. They will help you find the best in-home care aides, negotiate your bills with insurance companies and coordinate doctor’s visits.

My Future with Mom

Wellthy is now my mother’s aide. Mom’s current aide was found by her care coordinator, who she loves and has been a great help to Mom through this difficult year. The coordinator handled a major billing issue for us, and even resolved some disputes between Mom and I about her care.

Wellthy has helped me feel fulfilled in my career and my relationship with my mother. I no longer feel guilty. Now, I feel a different duty to our clients, team and investors.

Sometimes, I think back to all the long nights and days our family spent caring for Mom. Nobody ever tells the family members “You did great today.” We encourage our care coordinators acknowledge the hard work of these families. They will say, “You’re doing so many.” Your mom is very lucky to have you. A flood of tears can be released by the simple act of showing compassion.

It’s been such a relief to share my story, and for others to benefit from my journey. We get daily messages saying “thank you” and “I don’t know how I would have done it without you.” This makes it all worth it.

Lindsay Jurist-Rosner, cofounder and CEO at Wellthy, is Lindsay Juristist-Rosner.

We want to hear your caregiving story

What has caring for others changed your life? Write a 500-word essay about your experience as a caregiver and you could win a one-year subscription for Wellthy. Your story will be published in upcoming Woman’s Day issues.

Susy Wulf
author

Susy Wulf is a journalist, copywriter, editor and journalist. She has a BA degree in English from Monmouth University, and a MA in Global Communications (American University of Paris).

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