Forty years of multiple sclerosis. A bout with breast cancer a decade ago. Osteoporosis. Osteoarthritis. Through it all, Mom managed to stand stronger than any disease. She took whatever life threw at her, spit in life’s eye and dared it to do more. It took meningitis to lay her out flat on her back.
In a way, Mom knew something like this was coming. For years, she’d told my sister and me that she never wanted to be dependent on a tube to breathe or a tube to eat. Her worst nightmare was to be unable to move, unable to think and only be alive through the grace of a machine. And we were right on the doorstep of making that decision.
As my mom’s children, my sister and I had no problem at all with doing whatever it took to keep her alive. She was our mom, after all. There was nothing we wouldn’t do to keep her with us. Unfortunately, she raised us too well.
Mom made my sister and I be her guardians should she ever be sick. Because she gave us her power of attorney, we could make decisions for her, both medically and financially. And that meant we had to do what she would have done had she been able to make a decision.
The doctors at her hospital told us that they could do nothing else for my mom unless we allowed them to intubate her and insert a feeding tube. We wanted it. Oh, dudes, how we wanted it. The problem was that we knew our mom wouldn’t want that. She would never want that. She had spent the last several years drilling into our heads that she would never want to be kept alive by machines.
We didn’t want to do it, but we made what we think was the right decision. We checked Mom out of the hospital and into a hospice, where she could be made comfortable until she and her body decided what they were going to do. She might continue to decline and eventually pass on. She might stabilize and then move to a rehabilitation facility, there to regain whatever of her mind and body that she could. We just don’t know.
Every day here in hospice is different. The first day she was more aware than she’d been in days, responding to visitors, nodding her head, sometimes speaking. The second day, she spent most of her time asleep, opening her eyes only rarely. We just don’t know what she’ll do.
As I write this, I’m sitting in her room, looking at her on her bed. She’s breathing deeply, soundly and, if I closed my eyes, I could almost believe she was asleep. But then I open my eyes and I see that one eye can’t close all the way and one side of her mouth droops down uncontrollably. And I know she’s not sleeping normally.