Is Someone You Love Living With ALS?

More than one in five Americans serve as a caregiver, or care partner, for a loved one living with a serious illness or disability¹. For those who have stepped into this responsibility, the journey can be both deeply challenging and profoundly meaningful. It’s a role that could test your limits of emotional resilience and adaptability.

Being a care partner for someone with amyotrophic lateral sclerosis, or ALS (also known as Lou Gehrig’s disease), can be particularly overwhelming². ALS is a progressive neurological disorder with no cure that attacks nerve cells in the brain and spinal cord, resulting in the loss of the ability to move, speak, eat, and, eventually, breathe³. Most people with ALS succumb to the disease within three to five years after the onset of symptoms, making the care partner journey intense and, often, all-consuming⁴.

As a care partner for someone living with ALS, your responsibilities may include assisting with daily tasks like dressing, eating, hygiene, and transportation⁴. These responsibilities can sometimes feel overwhelming, so it’s essential to find your support system and make time for self-care. 

Theresa’s Story

PHOTO CREDIT: Contributed photo

Theresa knows firsthand what it’s like to care for someone with ALS. Her husband, Robert, began showing symptoms in 2018 like muscle weakness in his hands and slurred speech. After two years of testing and uncertainty he was officially diagnosed with the disease in 2020. As his ALS progressed, Theresa made the decision to retire in 2024 to become his full-time care partner. 

Now, Theresa’s daily routine includes assisting Robert with getting dressed in the morning, safely moving him downstairs, and preparing his meals. She relies on a power wheelchair, stair lift, adjustable bed, and transport chair to support his needs. Alongside being a care partner, she keeps the household running and finds moments of peace in daily walks.

“I had to retire from my career to become a full-time care partner as there were too many things to take care of at home,” says Theresa. “Now, I’m unable to go out as freely as I used to. Being a care partner can take a toll on you, but my goal is to always keep my husband safe.”

Through it all, Theresa manages to find time to care for herself, usually on Friday when an aid comes to help with Robert’s care. Theresa likes to meditate, treat herself to a haircut or manicure, and enjoys spending time with her grandchildren and friends. She stresses the importance of self-care, saying, “If you don’t take proper care of yourself, you can’t take care of someone else.”  

The Importance of Care Partner Support

When Theresa needs guidance on ALS or information on how to better support Robert, she taps into a wide range of resources. She consults with his doctors, researches online for information on specialized care, participates in care partner support groups, and builds connections with others affected by ALS. “It’s good to talk to others like me – care partners,” she explains. “Being able to share my story and hear from others is helpful and reassuring.”