On April 12, 2022, Connie Waite, my beautiful wife of almost 49 years, lost her battle with the ALS. Although our journey was short by normal standards, 6 months from the onset of symptoms and 6 weeks from the actual diagnosis to her passing, it was still a horrendous journey for her up to the end.

Connie’s and my journey were not unique across the ALS community where spouses, families, and friends become the primary caregivers for ALS patients and struggle to support the ALS patient’s physical, mental, and personal needs. For myself, my own needs often became of secondary importance. For me, once Connie was diagnosed with ALS, I whole heartedly accepted the additional role as caregiver.

I discovered that as her ALS symptoms became more prevalent, my role as a husband was somewhat diminished in lieu of ensuring Connie’s needs were accomplished, i.e. eating, bathing, communicating, taking medicine, going to doctor’s appointments, etc. But we were still our husband and wife. I believe that Connie needed more than ever that hug, kiss, the holding of her hand, or a soft I Love You whispered in her ear at times when it became most difficult. I reflect on our experience and question if I did enough of these somewhat simple expressions of my love for her to comfort her when she most vulnerable.

I also struggle daily to accept that I did enough to meet her personal needs. Once Connie was diagnosed with ALS, I was totally unaware of the resources that could have made her journey more compassionate. Finally, I still struggle with accepting that this happened. That a perfectly healthy woman one day could have ALS with no known cause. That a perfectly healthy woman would eventually die from ALS. My head accepts it, but not my heart. I’m still angry that Connie had ALS in the first place and there was nothing I could do to stop or cure the disease.