A Recipe for Caregiving: Love, Loss, and Lessons from My Mom’s ALS Battle for Family Caregivers Month

My mom’s slow-progressing symptoms began to worsen as the world shut down in 2020. The isolation blurred my perception of her reality, and it took me time to grasp the severity of the situation. After delayed appointments, she was finally diagnosed with Primary Lateral Sclerosis (PLS) in June 2020, which progressed to ALS in August 2023.

Becoming a caregiver for someone with ALS is a constant learning curve. You learn to lift them safely, manage feeding tubes, and keep up with medication. You also educate yourself on the disease, healthcare, and policies. Balancing their needs with your own is critical and ultimately, you learn to grieve for someone who’s still here. You notice their speech slipping, rely on texts instead of calls, and carry anger and guilt as daily companions. You also learn that everything can change faster than expected.

The experience has changed me from a Type B, timid person to the planner and advocate my mom needs. I manage her healthcare, Medicare, bills, assets, and more while balancing a full-time job. My days are a mix of doctor’s appointments, helping her at home, and simply spending time together.

Despite the challenges, there’s a lot of positivity. The community around us has been profoundly uplifting. My dad, my mom’s primary caregiver, balances his role with his full-time job in healthcare. My aunt spends days with her when he’s at work, and another aunt finds new activities to engage her. Family, friends, and my mom’s friends visit often, helping maintain a sense of normalcy. Our wonderful aide has taken the time to truly know my mom, and the ALS United Greater New York and their Young Professionals group have been incredibly supportive.

My role as a caregiver is to ensure my mom lives in a way that feels true to herself. She’s a fighter, mother, grandmother, partner, sister, and friend. Through all these roles, she’s defined herself through her love of cooking. Our ALS Walk team name, Janet’s Little Meatballs, honors her decades-long career as a cook in a private dining room in New York City, where she held her own in a male-dominated kitchen and showed me what it means to be a strong woman.

Even as the disease has taken away her working years, she still cooks and teaches me valuable lessons, many of which extend far beyond the kitchen: a dull knife is dangerous, timing is everything and adapt as you go. Her approach to cooking, rooted in simplicity and flexibility, has prepared me for caregiving. She kept recipes in her head, allowing her to adapt as needed while staying grounded in tradition.

Much like my mom’s cooking, there’s no guidebook for caregiving. Some days are hard, others feel impossible, but I try to stay present, trusting that the rest will fall into place. I have no choice but to keep moving forward, providing her with a life filled with love, adventure, and normalcy. – Natasha Dones