Some of you may have read this before
(Some of you have lived through this with me!)
I’ve been in many intense conversations lately
Which have reminded me of the centrality
Of accompaniment, which is love in action
At last, a little quiet and stillness. Judy Gallagher and her daughter Sarah brought over the evening’s delicious dinner. With a candle I had lit, Mev and I sat at the table, she in her wheel chair, and I in one of the rickety chairs I had brought with me from Louisville to New York, Cambridge to Berkeley, Oakland to St. Louis.
I knew Mev did not have her speech machine with her; I didn’t want to go into the bedroom to get it. I had a negative appreciation for that contraption. I wanted to see how much we could communicate without it.
I said the grace: “We give thanks this Thanksgiving Eve, for our love, for our families, for our friends who share their food and time with us. I give special thanks for all the love you have given me this year, Mev. I love you, I really do.”
She smiled, but I could tell she was exhausted. There were days she craved company, and the tumor was too much for the two of us. So at lunch that day, 12 people had come over to share Chinese carryout from the Silk Road restaurant. Then John Kavanaugh came over and played guitar to lull Mev into her afternoon nap. Her father was then working on a wheelchair to put a special neck backing on it and so make Mev more comfortable. Also, that afternoon, a couple of the Sisters came by from Visitation Academy.
It was quiet now, though. Most folks in the neighborhood had left to join their extended families in the county or out of town altogether. Our next-door neighbors, Sharon and Danny, had left for Ohio after our lunch.
Mev poked at her food. She was still trying to eat with her left hand. I began to feed her when the dressing dribbled out of her mouth down her chin. After I brought the spoon to her mouth, Mev backed up the wheelchair from the table, and started moaning. I asked, “What is it, Mev? Are you in pain?” I couldn’t make out the look on her face, and she started to scream. I worried that her medication was all messed up again. I asked her if she needed morphine. She replied with a scream that garbled, “Yeah,” but I wasn’t sure. She started to slowly move her wheelchair in a circle around the kitchen – “Uhhhh … Ahhhhhhh … Arrrggghhhhh … Uhhhhhhhhhh” — and her voice became more insistent and fearful. I literally pulled at my hair for a second, before I decided to call the Hospice nurse on duty, with the hope that she could tell me what was happening.
I got a new nurse, one I had not spoken to before. She told me to make sure Mev was comfortable and to go ahead and give her another decadron. This reassured me, for I just wanted her to stop wildly gesticulating.
As I hung up the phone, Mev circled her wheelchair in the kitchen three more times and then peed on herself. “Was that it? You needed to go into the bathroom? Oh, but why. . .” I began to say, but then censored myself. I was about to point out to her, “Why didn’t you just point to the sentence in the speech book?” when I remembered a recent time that Mev had screamed viciously at her mother, who had suggested the same commonsensical strategy at one indeciperhable time.
It was taxing to take off Mev’s clothes, move her out of the wheelchair and clean up the urine, so I called Cathy Nolan, who lived upstairs. She wasn’t at home, and I left a message asking her to come down as soon as she got that message, if she arrived in the next several minutes. After I had gotten her dried, Mev started to scream again, this time from the top of her lungs. It went right through me, but now I was utterly clueless about what to do. Her earlier discomfort had evidently been that she needed to urinate, but for some reason she couldn’t get that across to me, and I couldn’t guess it. I thought maybe she wanted to lie down and be more comfortable, so I wheeled her back into the bedroom. As her screaming continued, I lost control. There she was, naked, and I placed her on the bed, and threw the blankets off in a fit of bewilderment, and started my own screaming refrain to her incomprehensible agonies: “What does it mean? What does it mean?” Again, I yanked at my hair.
Just then, Mev crapped in the bed, and I felt broken beyond repair. My screaming stopped as I looked at her quivering and sobbing, and I started weeping. Cathy then arrived and started to comfort Mev, as I was moaning, “I can’t keep doing this.” Cathy got ahold of one of her community members, Mary Beth, and asked her to come assist me. A few minutes later, she arrived and held me in the hallway as I babbled, “I can’t live alone with my wife anymore. I can’t manage this.” She soothed me as Cathy took care of Mev, calming her down and cleaning her up. How the two of us slept that night is a mystery to me.