View from my mother’s bed

“Hi Aussie, how are you doing?”

“I don’t talk on the phone, I’m a dog.”

“Aussie, my mother’s home.”

“You’re not.”

“She’s lying on a hospital bed in the living room of her apartment, under hospice care. She can barely swallow. The white elephant in the room is the question of how long she will last like this.”

“You have a white elephant in the room? Why not me?”

“Nobody’s talking about the D word, Aussie.”

“You mean D as in Dilly’s Delicious Deer Delicacies?”

“No, Auss, I mean D as in death.”

“How about D as in Don’t talk about that?”

“That’s the trouble, Aussie, nobody wants to talk about that. The Jewish hospice nurse who came in discussed the situation as if this was standard home care, sickness turning eventually into health. The Arab hospice doctor was much better, getting rid of most of the hospital meds and prescribing fentanyl. Still, nobody mentioned death, they say it’s wide open. She sleeps most of the time, except when she has discomfort, and then we scramble to see how to help her. There’s some element of denial here.”

“My favorite D word.”

“Not mine, Aussie. It’s important to have a conversation around death.”

“Not with me. Don’t even think of coming home if you’re going to talk about that, stay away as long as you want.”

“I would like to get an understanding of whether she’s close or far, what are the signs we should look for. It’s hard to explain, Aussie—”

“So don’t!”

“We frame everything in terms of life. What gives us a higher quality of life, what enlivens us, what we need to function and enjoy life again, all the medications, therapies, supports, and technologies. It’s hard to turn the page and withdraw them. And its gets more basic than that, Auss. Imagine if you were deadly sick—”

“Let’s not go there. Goodbye. I’m a dog, I don’t talk on the phone.” Click.

Aussie’s right, who wants to go there? Who wants to live in the land of no recognition, no flicker of specific awareness, just a blank contemplation of some distant horizon while facing a wall, or even letting go of the external world completely and dwelling inside, unable to communicate feeling or insight? Whether it’s out there or in there, it’s very, very lonely.

I came in this morning, picked up a jar of baby food and a teaspoon, and asked aloud if she’d like to eat. No answer. I brought the half-filled teaspoon to her lips and she opened them, and I was able to give some half-dozen teaspoonfuls, while watching carefully the swallowing muscles in her throat. I stopped when she refused to open her lips.

She was agitated yesterday, today she’s quieter; the fentanyl doing its work. I’m used to thinking of sickness as an intermediate stage, but now I see that it’s its own country, whose inhabitants are referred to as patients because it demands lots of patience to live here. No big acts, just small ones—moving the edge of a blanket with your left hand, scratching softly at your upper leg, waiting for others to move you from side to side.

This morning I remembered Ram Dass saying that the nights were the worst for him after his stroke. Often he would wake up and feel uncomfortable, or else have an accident, and then he’d reflect on whether to wake up his attendant to move his body to the other side or not. “Lots of patience,” he murmured.

The effort to bear witness to the land of illness takes everything out of me. At night I sleep long hours; sitting watching her is exhausting.

What is life with no connection? What is life without a hand pressing yours in recognition? I have tried to breathe with her, but she breathes way faster than I do.

There’s great loneliness here.

           Donate to My Blog              Donate to Immigrant Families

You can also send a check to: Eve Marko, POB 174, Montague, MA 01351. Please write on the memo line whether this is in support or immigrant families or of my blog. Thank you.