Yesterday, while we waited for the Hospice social worker to arrive, I suggested we write down what we want to ask her. This is what she told me, verbatim, from my notes:
“What to expect, at the end? What do I do next? I mean right now? I’m afraid.”
“I don’t want to go on. No more fighting to go on. I’m in a lot of pain. This feels pointless. What are my options? How do I do this? ”
“I have family members who are not on my page, not on the same page with me. I don’t want to hurt them. Can I have help explaining to them? I’m not certain of my surroundings. Is this my body? I’m scared. This is too distressing, for me and for them.”
I keep my face relaxed, my eyes wide. Able to cry, in some ways ready to cry—but I don’t. I listen. I go where she wants to go, her way. Letting go so thoroughly of what I want, how I want it, is her gift to me. Sitting with her while she lies there, a collection of long bones in loose skin, is hard. Listening to her fears, jokes, needs, is impossible; I do the impossible. Not exactly poker face, but being strong for her, because she asked me to, and because I must do every calm, right thing. I must be there for her all the way to the end, to soothe her brow, ease her pain, calm her fear. I have to know and say the right thing, and for this there is no map or script. Except love.
She says her greatest fear is that dying will be falling into darkness, alone. I have to be there to show her she is held, to catch her, and to provide a light. This must be true, it has to go this way, so I use bad old skills for new good purpose. Stoic and calm, mindful and compassionate, inside-out and serene, are the improved versions of my old denial ways: numb and shut down, withdrawn and analytical, pain and pretending.
I thought I loved her unconditionally. As she deteriorates—from hundreds of tumors, and with the necessary burden of all those drugs—she is erratic in thought and feeling. Unpredictable. Her sudden correctives, her insistence on what we must do or stop doing—transparently about control, and fear of not being understood—are trying. But gritted teeth forbearance will not suffice, not if I am to be suffused with love and steady for her, when the time comes. I must forebear with all my heart. There is a whole other level of unconditional, it turns out.
The time comes soon, and I fear so many things. I fear her pain meds will fail, that she will die in pain. I fear her lungs will fail while she is conscious and relatively okay, and we will watch her drown, dry, at midday. I fear she will be in pain, in terror, and nothing we say or do will comfort her. I fear it will be slow, a fight for every breath for long minutes, hours. Days.
Molly slipped in and out of restless sleep throughout the morning, so I read, played with clay, wrote. Took pictures and a short movie of how she sleeps. I've made a half dozen of these movies in the last week: she moans, grunts. Her head rises so she can gulp air with each breath, to augment the level eight oxygen push, thru her nose. She does unusual things with her hands: wrings them, waves, taps. At times her arms go up, not just across the bed or behind her head, but also in the air in front of her. I can see the whites of her eyes, below the pupils.
She never looks thinner than when she sleeps, fitfully. At around ninety pounds I can put my hand most of the way around her leg. Her legs shake while she sleeps; they rustle under her sheet like old corn stalks. I see her shoulder sockets, vein-wrapped bones, the freckled, pale skin tight on her skull; her chin wrinkling with every labored breath. The right jaw curved, where it was rebuilt after the first, gigantic tumor was removed; the left withered, reduced.
She tells me I am a good father several times a day, earnestly, with details. I reciprocate. Because I raised her alone, until she was ten, was mommy and daddy both, we know what to do now: say anything true, and cry as needed, laugh as needed. Her crying only seems sudden if you don't pay attention. She says the words that explain her tears, almost always, and it is always, as she puts it, one last time for that particular thing, to declare, admit, wonder aloud, grieve. Once, last week, she didn’t say anything, just started to sob, wild-eyed, and when I stood, leaned, reached to hold her, she shook her head, said no. She is processing in real time all that must be processed, according to rules she doesn't wait to understand. She is existential.
Facing death, learning from it, staring it down, backing away and quivering in fear of it, sorting the regrets, raging, grieving, laughing, shrugging—all of it, she does.
She apologizes a little too often. Manages to turn that into a final lesson for herself. She asks me often to confirm or comment on something important. I can and do because I must match her as truth teller, whatever it is. (Almost.) She trusts me, and I know why: because I slowed down enough, accepted her enough, love her and respect her enough. I finished learning that just in time. To be calm in the face of her impending, difficult death.
She asks me things with her eyes. (Woe on me if I try to take those cues and get ahead of her, think I know better or try to control her. She still kicks ass, spontaneously and well.) I keep it simple.
She tells me again how she hopes dying is not like falling. She fears a feeling of falling, endless, in the dark. She dreams of it. How do I endure hearing such things from my beloved child? I say, “I understand.” I say I don't know, am not sure what happens, and we “yep, yep” at each other. I say if our pure spirit is real, and can exist outside our physical self, it probably is free of those physical sensations, too, once it is free. “Maybe,” she says. We “I dunno” each other, nod.
But here, now, writing this, I am overwhelmed, despairing, sobbing. I wonder if she is already falling, feels it. So thin, so sick. On so many, many drugs, and such high dosages. Perhaps she feels she deserves a dark place—I can't stand this. This is impossible, cannot be true, that my sweet, funny, sarcastic, warm-hearted child is leaving. Must suffer and tremble, know it is coming, feeling it as she says in all her organs, every bone.
So many fucking tumors, everywhere. Sometimes, she says, when she pees, it feels as if all her insides are falling out. I look at her, the utter lack of muscle and fat, anywhere, and I believe her. The hospice woman says this is because her organs, her system, is shutting down.
She wants to see her 42nd birthday, on the fourth of July. Hospice is surprised she is still here. I hold her hand while she sleeps, feel each pulse beat as if it is the only thing in the world. Yesterday I told her, when she asked, that she can let go, whether I am there or not. We have said all the things, resolved what we need to resolve. It is simply true, and we nodded. Today, at home again to gather strength, I cannot stand the idea of her dying without me, to catch her, ease her to ground, one last time.
Mums hospital experience 
Preying on the elderly
Ranting and raving (Apologies for the few choice words)
Non-family informal care role, big problems
