Unseen Heroes: Arizona Family’s ALS Journey Shines Light on Caregiving

In the ongoing battle against ALS, the Gilbert family from Arizona stands as a powerful example of resilience and the profound impact of caregiving.

Maya Carter, a devoted wife and caregiver to her husband Maceo, has been by his side for eight years as he battles the progressive neurodegenerative disease. Despite ALS taking away Maceo’s ability to perform basic motor functions, the couple focuses on the positive aspects of their life together.

“I can’t raise my arms, I can’t ball my fists. I can’t just stand up and give [Maya] a hug, we can’t just walk and hold hands,” Maceo said in an interview with ABC 15. Despite these challenges, he continues to work full-time using voice-command software and remains active in activities like horseback riding and water tubing. Additionally, Maceo is an advocate for policy changes, including addressing issues like the mishandling of motorized wheelchairs by airlines.

Maya’s dedication to her husband reflects the experience of many caregivers in the U.S., with an estimated 43.5 million unpaid caregivers, mostly women (65%), according to the National Alliance for Caregiving and AARP. These individuals provide a level of care valued at $470 billion in 2013, which exceeds Medicaid spending and paid home care services.

For Maya, caregiving is not a duty or job; it’s a commitment to her husband. “I don’t look at it as something I’m obliged to do, or look at caregiving as a job. I look at it as I’m just taking care of my husband,” she shared.

While caregiving demographics are evolving, with men now comprising 40% of caregivers, women like Maya continue to lead the charge, shaping how caregiving is understood and valued in society.

source

Leave a Comment