When I arrived at 9:30 pm last night to sleep on a futon next to Mom's bed, she was already sound asleep and didn't know I was there.
I spoke with the two nightshift caregivers, did some catch-up reading in my Al-Anon books of daily reflections, and turned out the light at midnight. At 3 am I woke and called a caregiver to check Mom's Depend and turn her onto her left side; I tried to squirt a dropperful of water into her mouth.
At 6:30 am I woke and folded the futon, gathered my books to go home at 7 am when the caregiver arrived. Mom was still sound asleep, but at 7 am when I was meeting the caregiver and instructing her in the care, Mom stirred.
"Hi, Mom," I said. "It's Anne. How are you doing? This lady Marilyn is going to take care of you today. I'm going to leave now."
"No, don't leave me!" she cried in a panic, grabbing my arm. All night she hadn't known I was here, but now that I was leaving, she was afraid.
I calmed her down and Elisa, the caregiver she knows well, arrived. We decided she might be in pain, and it had been 15 hours since her last morphine, so I squirted o.25 ml into her mouth. It tasted bad. Her mouth gagged open, toothless except for the eight front teeth on the lower jaw, a pitiful sight.
"I love you, Mom," I said, kissing her forehead, and left.
When I returned at 4 pm, she was sitting in her recliner by the window with the curtains wide open to the bright afternoon. Until a week ago she would always demand that the curtains be closed: "It's too bright." But today she was defenseless, either too remote to notice or too weak to make her wishes known.
"Hi Mom, it's Anne," I said, kneeling at her side and putting my face up to hers.
She didn't open her eyes or respond. In fact, her eyes seemed to be growing shut, shorter at each end, the tiny lashes almost invisible. Is it possible that if you keep your eyes closed all the time, the upper and lower lid will start growing together at each end, so the eye is only half as long as it should be?
I kept talking to her and she finally responded a little, her eyes opening a crack but the pupils rolled away, not looking at me.
I called for someone to take her vitals; her pulse was 64, but her blood pressure was only 114 over 59.
"Would you like to lie on your bed for a while?" I asked. "Are you tired of sitting in this chair?"
She nodded. We moved her to lie flat on her bed and made her cozy under the covers.
I left to go to the bank and mail some things to my daughters at the post office, thinking about how weak she had been.
Because she is not eating or drinking, the byproducts of her metabolism are probably building up in her blood; she is being poisoned. My brother Bill, the doctor, says that within 5-7 days her kidneys or liver will fail.
It's a grim vigil, waiting for this to happen, but she appears very peaceful lying in her bed or in her recliner. No struggle or pain is visible.
As a nurse who has shepherded many patients through this process, she understands what is happening. She accepts dying and wants to get through it. That's why she clenches her jaw when we try to squirt a dropperful of water into her mouth. If a caregiver tries to make her sip water or open her mouth to swab it with a tiny wet sponge on a stick, she waves her bony arms fiercely to scratch and fight the attacker.
Clearly, dying is hard work. All we can do is stand by and respect her determination. She's still in control.