Monday, July 18, an orderly wheeled her bed out of the medical surgical unit while I walked alongside it. Donna turned on her side and went to sleep. We took the elevator down to the fourth floor and the Hospice unit, walked past rooms with the nearly dead lying motionless while loved ones stood next to the bed or sat in a chair nearby. Some spoke; all looked broken. In the family waiting area a few people were speaking quietly, while others just sat and stared. Unlike the medical surgical unit this wing had no beeping machines. No rushing of staff to administer meds, check on IVs, measure blood pressure, or prepare discharge instructions. No one was discharged here. They were released.
Donna stayed lucid even though the pain meds were increased. I was still a caregiver, not a pallbearer. I became a force of nature in the Hospice unit, scurrying back and forth to the nurses’ station asking questions, speaking to nurses, social workers, patient aides. I was going to manage Donna’s death the way she managed her own life.
Donna and I talked about nothing, and I’d call friends and family to come by and visit, though it was harder for Donna to get it up for company now. She would engage but withdrew easily. It’s hard to be Donna when you are wearing a diaper and dying. I tried to be the host of the death talk show, welcoming guests and keeping the conversation going.
It wasn’t until day seven on the unit that one of the nurses, one of the more supportive and caring nurses, told me Nina could come visit. I brought her from home and she got on the bed with Donna and fell asleep. But by this point Donna was not fully aware of the world around her. She drifted around like a small white dandelion seed floating in silence, looking to alight on a new surface and start over.
Nina visiting Donna in hospice.
A few times I tried to sleep in Donna’s room. The staff would have set up a bed. I didn't want to trouble them so I sat in the chair across from her and watched and waited to fall asleep with her and share a dream. No luck. I stayed wide awake, thinking. This was not our bed. This was not our home.
Sometimes I’d read to her or play music on her iPhone. Her playlists and albums were mostly Donovan, Joni Mitchell, West Side Story, James Taylor, Edith Piaf, the Rushmoresoundtrack, and Keith Jarrett. I hope she heard.
Her dementia was getting worse and in the evenings it was acute, exacerbated by sundown syndrome. She became agitated, irritable, and demanding, losing her glasses while they were on top of her head, yelling at the staff if I wasn’t there. If I were at home they’d call me from her phone since she couldn’t work the screen, then she’d lace into me about how I ruined her phone or locked it.
“Now would be a good time to have end-of-life discussions with her,” the Hospice Rabbi and social worker said. “What does she want for her funeral? What are her regrets? Did she find joy in her life?”
Joy? I failed her. All I could do was think of that.
I hesitated for a day. Then next afternoon, alone in the room with Donna, I looked at her in the bed and said, “Donna, perhaps you want to talk about your funeral.”
She looked over at me and said, “Don’t be a maudlin pussy.”
Then she rolled onto her side and fell asleep.
I made the funeral plans in two days without her input. I was an account manager executing a tactical plan for a client, bang bang bang, do do do, keep moving so I don’t drown.