Each November, National Family Caregivers Month recognizes the 53 million Americans who provide care to loved ones with complex health needs. This year, we highlight the experiences of two current caregivers and two survivors to shed light on the realities of caring for patients with ALS.
Grace in the journey: Michele’s story
Michele’s caregiving journey began in 2018 with small acts of assistance for her husband, Benjamin—tying ties, buttoning shirts, shaving and bathing. By 2019, after a series of misdiagnoses, Benjamin was diagnosed with ALS. A fall soon after caused brain bleeds that accelerated his decline, leading to quadriplegia, a feeding tube and tracheostomy by 2021. His PTSD and rare intestinal condition have added additional layers of complexity, demanding constant vigilance, advocacy and emotional resilience.
For Michele, a current caregiver, the most rewarding part of her commitment is honoring her husband’s generous spirit by keeping him safe and comfortable. The hardest part is the unpredictability—planning outings or appointments feels like a gamble, and sleep is scarce. “He is my priority, and I wouldn’t trade this for anything,” she said.
Her message to caregivers: give yourself grace, embrace change and prioritize self-care.
A journey of advocacy: Lisa’s story
Lisa, a current caregiver, says her experience began in 2011 when her husband was diagnosed with ALS. At first, the disease progressed slowly, but by 2020 his near-paralysis forced her to seek help. Having put her husband in hospice for additional help, Lisa was at her wits end when a fellow caregiver connected her with Maxim Healthcare, whose skilled nurses transformed her husband’s care. “Everything changed once we were onboarded with Maxim,” Lisa said. “My husband was able to leave hospice.”
Her journey demanded relentless advocacy—from securing care through the Department of Veterans Affairs (VA) to helping pass a provision of the Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act of 2025, which addresses various programs, benefits and services provided by the VA , including those related to health care, educational assistance, home loans, homelessness and disability and memorial affairs.
She says the greatest reward has been honoring her husband’s wish to stay home with family. Her words of wisdom to fellow caregivers: caregiving is a calling. “Connect with online communities, ask for help and share task lists with loved ones to make their support meaningful,” she said.
Honoring the journey: Ashley’s story
Ashley, a survivor recalls her father’s weight loss and weakness in his right hand when her journey began. Believing the weakness was arthritis, he kept symptoms to himself for years until his diagnosis in 2009.
Her journey was unique—an adult child caring for a parent while also raising her own family following her husband’s death. Ashley says the most rewarding part was simply being there for her father. “In that isolation, we found connection,” she said. “We were able to take advantage of a second chance at time and making memories.”
To Ashley, caregiving is often misunderstood. “Every caregiving situation is not like ALS where it’s 24/7, so people would always ask me what I did with the rest of my time, as if there was any.” Ashley said.
Her advice to caregivers: take support wherever you can find it, use available resources and understand that your situation and experiences are unique.
Walking the ALS caregiver journey: Lara’s story
Lara, a survivor, says her caregiving journey began in 2016 when her husband was diagnosed with ALS. Unlike many veterans with full coverage, their journey was slow and complicated. By 2019, he had a tracheostomy and ventilator and left the ICU fully paralyzed. With nurses visiting only once a month to their home, Lara learned to manage complex equipment, including catheters and feeding tubes.
The hardest part was watching her husband lose independence while balancing care for him and their young son. “He fulfilled ‘till death do us part,’ but I was robbed of the happily-ever-after we dreamed of,” she said.
The most rewarding part of her journey was knowing she gave everything she had. Blogging about their journey helped her process the exhaustion and fear while showing others the realities of caregiving. Advocacy was difficult at first, but when her husband could no longer speak up, she found her voice.
Her message to caregivers: you are not alone. “Connecting with others saved my life,” Lara said. “Support groups and VA resources provided both emotional outlets and practical tips that made caregiving more manageable.”
Closing
Caregiving through ALS can be exhausting, frightening and deeply fulfilling. Each story—Michele’s grace, Lisa’s advocacy, Ashley’s resilience and Lara’s love—reminds us that caregivers are the hidden heroes of this journey. National Family Caregivers Month honors them, but their strength deserves recognition every day.
Resources that make a difference
Our group of caregivers provided an extensive list of resources for family caregivers with ALS patients below.
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Facebook Groups:
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Organizations:
Maxim Healthcare offers extensive home health, personal care and behavioral care services to the military community. To learn more about the services available near you, contact your local Maxim office. You’ve served us; now let us serve you.
