E18: Hard Truths, Hidden Gifts, and Holding Boundaries

In this episode of ALS Caregivers & Beyond, co-hosts Mary Ward and Lara Garey welcome their second guest, Lisa Musselman — a fellow caregiver, advocate, and newly selected Elizabeth Dole Foundation Fellow.

Lisa shares her 14-year journey caring for her husband Andy, an Air Force veteran living with ALS and FTD, and reflects on how caregiving has unexpectedly awakened her passion for advocacy. Together, Mary, Lara, and Lisa dive into:

• The challenges of navigating VA systems and the fight for equitable care across the country.
• The gifts and blessings that can emerge in the midst of ALS — from lifelong friendships to unexpected community support.
• Balancing autonomy and boundaries in caregiving, and the toll of making hard decisions while honoring a loved one’s wishes.
• The power of advocacy through the Elizabeth Dole Foundation, IMALS, and grassroots caregiver voices.
• Why caregivers matter not only as care partners, but as people with their own health, dreams, and needs.

The conversation is raw, hopeful, and deeply real — reminding caregivers everywhere that while ALS may change everything, it doesn’t have to take everything.

• Elizabeth Dole Foundation: www.elizabethdolefoundation.org
• I AM ALS / Synapticure (for non-veteran ALS families): www.iamals.org
• For veteran caregivers navigating VA systems, contact Lara Garey at [email protected]

👉 If you’re a caregiver, we’d love to hear from you: What boundaries have you set in your caregiving journey? What blessings have surprised you along the way? Share your reflections with us on social media or by email.

Lara Garey: [email protected] or [email protected]

Mary Ward: [email protected]