This November, during National Family Caregivers Month, we are shining a light on the vital, sometimes unseen role ALS caregivers play for people living with the disease, including those who don’t fit the mold of what we often THINK of as an ALS caregiver.

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Stacey Kinsey thought she was done with the day-to-day caregiving part of being a mom. Her daughter Shelby had just graduated from college, and she figured her role as a mom would now be offering advice, guidance, or maybe a shoulder to cry on as Shelby made her own way in the world.

But things changed during the spring of 2023. It all started with a fall. Shelby was waitressing and while she was going up some stairs, she tripped and tumbled. “And then she continued to just fall,” Stacey said. “So, we thought, pinched nerve. I knew that we had ALS in the family, but at 21, you never think, ‘Oh, that's ALS.’”

Doctor after doctor told them the same thing, but as time went on and Shelby’s condition worsened, she decided to undergo genetic testing, which revealed she had SOD1-ALS, a rare genetic form of the disease typically associated with a younger age of onset and shorter survival.

“I remember the night we got the diagnosis. She was living in Rockport. We were living in West Texas, about six hours away from her. And I was devastated. I cried. I threw a fit,” Stacey said. “And then we drove through the night to get to her. We got there, and when she woke up the next morning, we cuddled in bed. We cried. We got it all out. And after that, there have been maybe one or two moments of sadness. We've just lived our lives happy and ready to do whatever that day brings.”

For Stacey, that meant moving back into the role of caregiver for Shelby. “When we first started the ALS journey, my thought was, how am I ever going to do that? How am I going to shower her? And how am I going to clean her up after she uses the restroom?” Stacey said. “Once they're out of diapers, you think, that's done, I don't have to do that anymore. I questioned myself on whether or not I was going to be able to do that.”

Just as quickly, Stacey found that the switch in roles was not as big a change as she thought it might be. A mom is always a mom, after all. “As it rolls around and those things present themselves, it's natural. You just pick it back up, and you just do it. And you do it like it was second nature.”

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While moving back into the role of caregiver has gone smoothly, both have had to remember to give each other grace as they find their way. “The most challenging thing, I think, is remembering that she is an adult with her own ways of doing things and her own opinions,” Stacey said. “This sometimes causes us to butt heads, but we work through it together and figure out what is best for her and myself.”

Humor has helped both mom and daughter get through many of these challenges. “We like to joke that I'm going through my terrible 20s!” Shelby said. “We make fun of what our lives have become since ALS, because we refuse to let it take over our lives,” Stacey added.

And even though this was not the path either had expected or planned for, both have found strength in facing the journey together. “We have always had a close relationship with each other,” Stacey said. “We are both learning to have more patience with each other, learning to listen to each other more, and learning to adjust to each day’s new changes together.”

For most of us, our mom was our first caregiver. And even after we grow up, moms don’t stop being moms. They are there for our triumphs, our setbacks, and all the little moments in between. For Stacey, being Shelby’s mom now is different in some ways, but in many ways, it’s not. “Love them exactly as you did because they are exactly the same person they were before,” she said.

Additional information and resources just for caregivers can be found on our website HERE.

To find more ALS caregiving information and resources to help support you or someone you know, visit our website HERE, or sign up to receive our e-newsletter, Care Matters, HERE.

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.

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