My mother, Ruth, is a flower closing. Her belly button is the center, the point around which the collapse occurs, limbs drawing in. Her shoulders are compressed forward. There is the hump of her upper back. The matching curl of her knees when she sits in her wheelchair or lies on her side in bed. The pale feet, which she cannot move. At the center of her body, death is pulling on a cord, gathering her in and down.
How often I have said the words — dementia, Parkinson’s — the names attached to these mechanisms that are slowly taking my mother away. Depression is a common symptom of Parkinson’s; lately, she is so sad, and she has no language for it. She has retreated further, her love cooling. I both dread her dying and want it to happen faster.
“If she were herself,” I tell Bill, my husband, “she wouldn’t want to live like this.”
“If she refuses food,” the nurse says, “we don’t press her.” This is after she’s informed me that Ruth has lost more than twenty pounds in the past three months. I calculate. At this rate, she’ll weigh seventy in six months.
Then the doctor calls to report that Ruth has about three months to live; six, at the most. I ask what he thinks might take her in the end, since, despite the Parkinson’s, her heart and lungs are strong.
“Pneumonia is a likely possibility,” he says. Then he asks if we plan to give her antibiotics.
“No,” I say, “my sister and I have discussed this at length and decided against it. We don’t think it’s what she would want.” When I add that I am concerned about her being in pain near the end, the doctor assures me that morphine, properly administered, should relieve any discomfort the pneumonia might cause. I ask him about the feeding tube that I’ve heard he has offered her, and which she has refused.
“Do you think she understood your question?” I ask.
“I’m not sure,” he says. “But she did say, ‘No,’ strongly.”
“We don’t want a feeding tube,” I say. Then I add, “Did you know she was a chiropractor?”
“Really?” He sounds impressed.
For the past month, it has been a strain to visit my mother every week, and I’ve finally decided not to see her so frequently. She was always so strong, healthy, and in control; seeing her helpless, dependent, and afraid breaks my heart and scares me. Yesterday, I thought about my own children, imagined them in the position I’m in now, and asked myself whether I would want them to visit me if it upset them this much. I answered, honestly, No. And I was free of guilt for one day. Now comes this phone call from the doctor, and everything has changed. It never stops changing.
I call my sister Susie and give her the news. I explain how the doctor’s prognosis has renewed my problem with visiting, and she tells me, “Don’t visit her if you don’t want to.”
She always says this. Because the burden of visiting is all on me, the one geographically closer to our dying mother, she feels guilty. Sometimes I am resentful and angry about the responsibility. Other times, I simply acknowledge it as the natural duty of a daughter. I tell Susie how difficult it is, how I wish she were here, and she says she understands. She does visit often and wants to be with Ruth when she dies.
I do, too. Dying, the final scene, will be dramatic, or at least interesting, but the process leading up to it is long and tedious. We all want to skip the last act and just show up for the finale.
Earl, a terminally ill friend, is getting worse, and I offer to visit him every other week and read to him. I have to drive past the nursing home to get to his house, which makes me even more uncomfortable.
I love reading to Earl, because he understands what I read and offers interesting comments. I can easily give him some of the love I’m finding it difficult to offer my mother. I sit and listen to his breathing, inhabiting my own body beside his emaciated one, suddenly grateful for the fat on my thighs.
One day, I let myself into Earl’s house, as he has told me to do, and find him on the couch with the oxygen tubes in his nostrils. His eyes are closed, his breathing labored. I knock on the wall to awaken him. No response. I call his name, touch him lightly, say, “Earl,” louder. Nothing. Maybe he’s in a coma. I go upstairs and call Bill. “What should I do?” I ask. He suggests that I read to Earl anyway, that he might hear me. This isn’t what I wanted to hear.
I return downstairs and listen nervously to Earl’s difficult breathing. Then I go back to the phone and call Kathy, the hospice nurse.
“I’ll be right over,” she says.
Kathy arrives within fifteen minutes, goes over to Earl, briskly shakes his shoulder, and yells, “Earl!” He instantly opens his eyes and sits up. Kathy and I start laughing, and I explain to Earl why we look so relieved.
“Oh,” he says. “I’m sorry. I was just having a deep sleep.”
Kathy tells me not to worry, that these things happen all the time; she was on her way out anyway. I tell Earl about Bill’s suggestion that I read to him while he was out. Earl likes that one a lot.
I realize that I am letting people care for my mother who love her less than I do. And I must forgive myself for this again and again. I fantasize about bringing her home and handing her Social Security check to a private nurse, who assists me in helping her die quickly and with grace. But I can’t imagine my dying mother in our guest room.
I remind myself that she put her own parents in nursing homes. “I’d shoot myself in two days if I had to care for her,” I tell a friend. But the guilt I’m trying to dislodge is ancient and deep: I am not caring for the mother who gave birth to me and loved me, whom I ought to accompany through her dying.
“It doesn’t matter whether you visit or not,” the counselor says, “so long as you are at peace with your choice. Your mother won’t remember.”
“But I will,” I say.
Inside me, a war rages. On one side is my small self, the coward who wants to hide, a delicate soul who cannot bear the smell of the nursing home, the sight of the deformed and shriveled bodies, the irrational and mournful sounds. This self cries often. She will always be too sensitive for this world. Her mother told her this constantly.
Opposing her is the conqueror, the self who strides out, takes on all comers, and wins. She says, Drop by. Visit. It’s no big deal. She bullies me. She’s impulsive, pushy. What kind of daughter are you? she chides.
A scared one, I say, taking the side of the small self. I tell her that my mother wasn’t always kind to me. I dream up excuses. I turn mystical, saying that I’ll pray for my mother, visualize her finding peace in another realm.
The argument runs on and on, like a Russian novel with too many characters and lots of philosophical asides, political manifestoes, and religious debates. It is endless, this subject: to visit or not to visit. It is metaphysical, psychological, diabolical. It is the arena in which my angels and devils fight it out.
In temple, when I was a girl, we sang, “How goodly are thy tents, O Jacob, thy dwelling places, O Israel.” This dwelling place is wet and full of confusion. And I now know that inside each of us there is not a single dwelling place, but many, and they change all the time.
When I was a child, death entered my bedroom each night. It was the rattle in my sister’s asthmatic chest, three feet from where I lay trying to sleep. I was there in my body, but really I was at the bottom of a deep, dark pit with slick, oily sides. I fell into this pit every night, my pink nightgown blown up around my head, my body cold and wet with fear: No sound. A space at once too vast and too confined for a scream. Nothing but me, falling, falling.
I never called out for my mother. I knew better.
“Daddy has a heart murmur,” Mom had told me. “That’s why he wasn’t in the war. And that is why we must never, ever disturb his sleep. His heart needs to rest.”
My sister’s cries mattered, but with me, it was a Chicken Little scenario: The sky wasn’t really falling. It was only my imagination. And so I kept falling alone into nothingness, into the idea of not being. I could not fathom this, could not imagine that the world could exist without me, without the sting of me — my teeth, my breath, my eyes.
When my son Josh was about ten years old, he, too, went through a bedtime struggle with the concept of death. I sat beside his bed each night, patting his back, listening to his fears. Then we bought him a radio that shut itself off automatically after he went to sleep. He fell asleep to the sound of human voices and awakened to them each morning. I remember one of these mornings vividly: I was downstairs in the kitchen fixing breakfast. It was a school day for the kids, cold and still vaguely dark outside. I could hear the stream running beside our house.
“Mom!” Josh yelled. “John Lennon was shot. He’s dead.”
I immediately began crying.
“Stop it, Mom,” Josh said. “You didn’t even know him.”
At my request, shortly after the doctor’s three-to-six-months prognosis, hospice comes in to care for my mother. She responds immediately to the increased attention, begins to eat more, gains weight. I appreciate the sense of being on a team with other caregivers, of no longer being alone with her. Happily, I find I am able to visit more often.
Two months pass, and then, because of regulations regarding the duration of care, hospice must cease attending to my mother. (If we use up all her allotted hospice time now, we won’t have it when she enters the acute phase of dying.) Ruth immediately declines both mentally and physically, losing five pounds over the next month. My visits hardly cheer her, and her spirits shrink dramatically. Once, the nursing staff tells me they found her doubled over in her chair. They were able to rouse her quickly, but she might have had a small stroke.
As for me, I’m depressed, alone again with my mother, my burden.
Then a good friend who’s a nurse suggests I organize my own private circle of hospice-type visitors for Mom. I check with the nursing home, get the green light, and send letters to a number of people, explaining the situation and asking for a commitment of a monthly visit. Several women are glad to do it. It’s clearly not the same as hospice care, but it helps.
Mom’s condition becomes a bridge between me and the friends who visit her. Our friendships grow closer. My mother’s helplessness is, after all, the helplessness we all will face in the end, and we all feel a tenderness from witnessing her situation.
As my mother continues to die, something inside me is dying, as well. Out of a storm of feelings, a wave appears and knocks me over: If I am no longer her daughter, whom is there for me to please? To answer to? To be happy for? To live for? Oh, I know the prescribed answers — I’ve been reading a few of those self-help books, but none of them does any good. Rage gathers in my belly. I boil as my mother cools, swell as she shrivels. I’ve been so good all my life, and this is what I get? Worse, if I no longer have to be the person she wants me to be — the person I’ve become and lived inside for fifty years — then who am I?
I stare at a postcard that hangs in my study. A stone sculpture of a primitive, animal-like creature, verging on human, stares back at me, eyes wide, teeth bared, nostrils flared. She’s sitting the way many poor women in India do: back on her heels, knees up, her breasts touching the tops of her thighs. From between her legs emerges a small replica of herself, also wide-eyed and grimacing.
The phone rings at 10:30 P.M. It’s Joanne at the Buckley Nursing Home. “Your mother’s not doing well,” she says. “I think it would be good for you to come over right now.”
“Is she dying?” I ask.
“I don’t know,” she says.
What do I bring, besides my thumping heart? Do I call my sister? Finding the small, kidney-shaped stone the hospice social worker recommended for “centering,” I hold it, stand still, and breathe. Then I gather some things and leave for the nursing home.
Ruth looks terrible. She’s propped up in bed, her eyes are red, and she’s coughing. When I ask the nurse what’s wrong, she informs me that, without my permission, Ruth has been given a vaccine against pneumonia. (Later, I will confront her doctor, who will apologize for the mistake.) The crisis, the nurse explains, is most likely a reaction to the vaccine, but they can’t be sure.
Mom is agitated, afraid — I can see it in her eyes — but my presence begins to calm her.
I move a chair over beside her bed and hold her hand. It’s warm, which is reassuring; dying people have cold hands, as everyone knows. I sit with her and let her cough in my face, though I worry that I’ll catch pneumonia. She is weepy and keeps repeating, “I want to cry. I want to cry.” This from the woman who hardly cried in her life, who never wanted me to cry. I stroke her forehead and tell her it’s OK to cry.
Nothing.
“Do you want me to cry?” I ask. “I’m really good at it.”
She nods.
I find that I can muster up only a tear or two.
“I’m sorry. I can’t cry well tonight,” I say. I laugh, and so does she, but her laugh turns into a phlegmy hack.
The nurse comes in to check Mom’s blood pressure, pulse, and temperature. When she’s done, I follow her out, and she says Mom’s vital signs are basically fine.
I go back to Mom’s bedside and tell her she’s not dying. She responds with another coughing fit. Her eyes clasp mine. Then, in a raspy, dragged-up-from-the-bottom-of-a-well voice, she mutters, “Shhhh . . .”
I lean forward. “What?” I ask.
The hissing, wet-frog sound expands into “Shalom” — guttural, Hebraic.
I get it. She wants me to sing the song again. I begin: “Shalom Aleichem . . . welcome angels, angels of peace.” I sing it over and over as her eyes flutter shut. Soon she’s asleep, and I steal from her bedside to talk to the nurses. We agree that Ruth will not die tonight, and I head home. It’s close to 1 A.M. I feel relief, and a small spit of disappointment.
This episode has an effect on me, and for a while I visit Ruth regularly without dread. I have faced her fear with her and have come to feel the value of my presence. I start to miss her if I don’t see her for several days. I am happy to be able to back up my love with action.
The circle turns. Just when I believe I am losing her, she comes back. Just when I think I can no longer stand seeing her die demented and crippled, I find the strength to see her often. She says, “I want you to be my mother.” And I say, “Yes, I’ll be your mother.” And I stop being a daughter, give up the ancient idea of her as protector, comforter, source. I grow ten feet tall and four feet wide. I take death onto my lap and say, Yes. You too. My mother rubs her drippy nose, and I hold her damp fingers in mine. I keep singing to her — songs from Annie Get Your Gun, Damn Yankees, Carousel, My Fair Lady. I sing my heart out, her hand in mine, and in doing so, I get my heart back. I get my mother back, only now she is my child.
My mother is alive because she wants to be. Someday she will say, “This is enough.” She won’t say this with words. She won’t even think, Enough. But she will know it, or it will know her. For now, it is enough that we have come to this point in the circle: the mother become daughter, and the daughter finally strong enough to become mother. We end here, where the words stop, before the end.
“Visiting Ruth” is excerpted from How I Find Her: A Mother’s Dying and a Daughter’s Life. ©2001 by Genie Zeiger. It appears here by permission of Sherman Asher Publishing.
