ALS a long road for caregivers, too

When my husband, Steve, was diagnosed with ALS (amyotrophic lateral sclerosis) eight years ago, all we knew for sure was that it would slowly rob him of his ability to function, and then it would kill him. We had no idea how tough our journey would be. I knew that because I loved Steve, I would give him the best I had, but I wasn’t sure my best would be enough.

In the beginning, I did simple things for Steve like buttoning his shirts. Now, Steve can no longer do anything for himself. Through the years, my role as wife has morphed into an unbalanced blend of wife/caregiver, heavy on the caregiver part, and I’ve had to learn more about medical procedures and equipment than I ever wanted to know.

Steve needs assistance to move from bed to wheelchair to toilet several times each day. Fun activities, like visiting a child at college, are stressful for us. Because ALS has taken his ability to speak, we often communicate via email even when in the same room. He can’t hug me, kiss me or hold my hand. Sometimes it feels like we are simply coexisting.

To say this is tough is the understatement of the century. Fortunately we have hired a professional caregiver to help us part time, which allows me to do the things I love and exist “just” as Steve’s wife, a great gift. In this way, Steve’s caregiver is caring for me, too.

We are also cared for and supported by the Les Turner ALS Foundation, our lifeline through the twists and turns of our ALS journey. This month, which is National Caregivers Month, I am reminded that my caregiving journey is challenging, but I do not journey alone, and my best is enough.

Suzanne Heronemus

Batavia