There’s no doubt about it, being a full-time caregiver is difficult; stress, burnout and the feelings of isolation are just a few of the challenges many caregivers report feeling on a daily basis. But for someone who has devoted their life to caregiving, it can be equally as challenging to admit and accept the need to be cared for.

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Julie Downing knew a lot about family caregiving. She watched her father care for her mother after she was diagnosed with Alzheimer's and even took on some of the caregiving herself where and when she was able to pitch in. After her mother passed away, her father began to show signs of dementia himself, resulting in Julie and her husband, Ted, moving him with them to Sarasota, Florida, so they could be caregivers for him.

Julie decided to make it her life mission to provide caregiver support and empowerment to others. As her passion continued to grow, she decided to combine her corporate background in HR and training along with her personal experiences to facilitate caregiver support groups, design caregiver workshops and prepare tools and resources to help. And with that, her business, Caregivers’ Comfort Creations®, was born.

“My passion is the caregiver, because I personally know the repercussions caregiving has had on my life since 1996,” said Julie.

Unfortunately, Julie’s lifelong involvement with caregiving would change drastically in 2021 when she was diagnosed with ALS. Now, she was the one in need of assistance from her husband and others. “I have so many supportive friends always wanting to serve me and assist my husband with my care,” Julie said, “I am so far from my norm of doing what I used to do that there are times I don't understand and am so sad about my mobility issues and ongoing circumstances.”

While Julie was eternally thankful for the help and support of her many caregivers, she found the transition from being a caregiver to being cared for challenging at times. “When you are handling a disease, it is difficult to be patient and let those who help you do what they want to do,” Julie explained. “It's difficult because what they must do or want to do may not be handled the way you want. There are times I let Ted know when he is not handling circumstances like I would have, and I know I need to always be appreciative of him as my great caregiver.”

But even while facing ALS, Julie did not stop her efforts to support and provide resources for others. She created a series of calendars including inspirational messages designed specifically for caregivers, monthly “to dos” to ensure they are making themselves a priority and space for recording appointments and notes related to their caregiving experience.

Julie considered Caregivers’ Comfort Creations® to be a tribute to her parents to carry on their legacy, and her work helped her to keep a sense of normalcy while living with ALS. Still, she admitted there were times she struggled to accept the things she could no longer do saying, “I am not a normal patient with MY business dedicated to caregivers!”

Sadly, Julie Downing recently lost her battle with ALS, but her legacy will forever live on. Special thanks to Ted Downing for allowing us to share her inspiring story and passion for caregiving with the ALS community.

If you’d like to learn more about caregiving for a person living with ALS, enroll in our free online Caregiver Education Course today. To find additional support and resources for caregivers, visit our website HERE or contact your local ALS care team.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog. If you or someone you know would like to share a story with the ALS community, share with us HERE.

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