"Go gentle" my foot.

My mother and Dylan Thomas—they’re buds. And she’s taking Thomas’ advice; she WILL NOT be going gentle into that good night, thank you very much. Old age is definitely burning and raving in Mom’s world.

Mom has a combination of advanced CLL (a blood cancer), atrial fibrillation, and congestive heart failure, and we’re moving in on three months of home hospice care. We’re at the point now where communication is very hard. She can/will—sometimes—answer yes or no, and she will sometimes surprise me with sudden, spontaneous utterances, some that make sense (“Your puppy…sheesh.”) and some that only she understands (“Why is it moving?”). But mostly, communicating seems too hard for her—it takes too much energy.

It doesn’t help that she’s deaf in one ear and has only limited hearing in the other, or that she’s blind in one eye with only blurry vision in the other. (I try to see the "lesson" in everything, but seriously...how much IS one person supposed to deal with at one time?) I think it takes too much effort for Mom to navigate between this world and the muffled, cloudy, uncertain world in which she must be living.

Mom’s days have been whittled down to the bare essentials: She wakes, goes to the bathroom, goes to the kitchen table, eats/drinks, goes back to bed. Rinse & repeat 4-6 times a day, though that frequency is dwindling. She needs help every step of the way. She has brief moments of clarity, which I’ve learned to recognize in her eyes. For example, when I said, “Should we curl your hair?” she immediately gave me THAT look, the one I’ve been getting since my teen years whenever I do or say something idiotic. She was ALL there for a second, and I busted out laughing.

But mostly, Mom is unsettled and restless. For two months, she woke every two hours throughout the day and night, like she had an internal alarm, and insisted on going to the bathroom. I came to believe “bathroom” just meant she wanted to get up; Mom has always been at the center of things in her life, and I don’t think she can stand being “out of the loop” (even if we’re all just somewhere trying to sleep) or imagining there might be things happening without her. Hospice has helped us find the right med combo that lets her sleep more peacefully at night—she still wakes two or three times a night and sits up in bed, silently shuffling her blankets. I get up and help her lie back down, and she goes back to sleep.

I wonder sometimes if her restlessness is really fear. Mom doesn’t have any religious beliefs or spiritual practices, and though she’s said she’s not afraid of dying, she is certainly clinging to life. She has unbelievable grip strength, and she is always holding onto something, which I find an apt metaphor for this stage of her life. She even grips the guardrails of her hospital bed in her sleep. And I mean GRIP, as in, I’ve had to gently pry her hands from guardrails and grab bars. I can imagine that for someone like my mother, who’s always had a personality larger than life, non-existence—oblivion—might be the scariest thing of all.

Not long ago, when Mom was still more able to talk, I managed a brief visit with a friend, also in hospice care at home. And when I got back, Mom asked what our friend believed would happen when she died. We talked about it for a while, but I got the sense she was no closer to any kind of peace or comfort of her own. I’ve talked to her about the physics of dying—electrical energy that’s released but never stops existing—but that doesn’t seem to allay her anxiety either. Instead, I usually get THAT look, the one I get when I talk about tofu, organic kelp flakes, ghosts…or curling her hair.

Mom - pretty as these flowers.

Now we’re beyond conversations. I still talk to her (sometimes I’m so sure she hears everything), but mostly she doesn’t answer. I tell her everything’s okay. I tell her we’ll be right here with her. I tell her we’ll make sure she’s not in pain. I tell her we’ll take care of each other. It’s all I can do really. I could talk to her about samsara, and coming back around on the wheel of birth, life, death, rebirth, until we understand true buddha nature and free ourselves from the repeating cycle, but I’m pretty sure she’d either pretend to be asleep or give me THAT look. Again.