What are your biggest challenges as a caregiver?

My biggest challenge in the early years was not having enough time to properly care for myself and not having anyone who could provide respite support for me. I had to call on friends and neighbors to help with running errands and transporting our children places, but they couldn’t go to the doctor or dentist for me. There were many events our girls and I had to miss out on, because my husband either didn’t want to or was unable to attend, and he couldn't be left home alone.

What do you do to maintain your own well-being?

As a long-time caregiver, I was very close to burnout and unable to care for myself fully. Once we started getting skilled nursing in our home, it allowed me the freedom to begin a self-care routine that I continue today—going to the gym, the chiropractor, and physical therapy to rebuild strength related to injuries I sustained while caregiving. I take care of my mental health through visits with a therapist, respite opportunities like being able to see friends and visit family out of state, and taking our children on vacations to allow them time away from caregiving duties.

What have you learned about yourself through your role as a caregiver?

When Andy was first diagnosed with ALS, a very good friend told me this would make me stronger, and I would become a voice for those impacted by the disease. Her words of wisdom gave me hope at a time when I felt so overwhelmed and frightened. I didn’t know then, but my efforts in getting my husband the care and resources that he needed were going to become a defining part of who I wanted to be. With every achievement, I felt more empowered and suited to the role of caregiver and veteran advocate.