She weighs ninety-three pounds. Her legs are drawn up against her body. Her hands clutch at anything they come in contact with, pulling it to her mouth, clenching it between her teeth. Her eyes are half open, unseeing.
An IV drips fluid and antibiotics into my mother’s arm. A catheter drains the fluid from her bladder and away from her body. A nurse comes in and holds a mask over her face, willing the mist into her lungs.
When the nurse leaves, my sister, Ruthie, and I hover over our mother’s gaunt body. We coax her to take nourishment from a straw. She takes the straw into her mouth but chews on it instead of sucking. She accepts a bite of pureed food from a spoon, but her tongue moves the wrong way, pushing it out of her mouth instead of moving it back into her throat.
She doesn’t know me, her youngest daughter. I live nearly 1,000 miles away, in Colorado, and only visit three or four times a year, so it is not surprising that she doesn’t recognize me. Ruthie lives nearby and sees her daily, but Mom doesn’t seem to know her, either. Maybe she just doesn’t care if we are there.
She is ninety-seven years old. For ninety of those years, she was one of the most capable, independent, and strong-willed women I have ever known. I saw her digging ditches and changing tires alongside my father at the businesses they owned⎯first an automobile service station, and later a mountain resort⎯and she taught herself the bookkeeping skills required to run a business. When Daddy died at age 50, she moved to California, where she became caregiver for her own mother and worked at a hospital for nearly twenty years to support them both.
For five years now, she has been unable to move around, feed herself, or communicate effectively. Extreme agitation, daily anger, and chronic pain have been only partially controlled with medications. The nursing home staff has provided total care for all her physical needs, feeding her, changing her diapers, turning her over in bed.
They brought her to the hospital two days ago with severe diarrhea, dehydration, a bed sore on her bottom, fever, low oxygen, skin tears up and down her arms. Now they have confirmed MRSA in the blood and are looking for C-diff in the stool.
My sister and I look at each other and shake our heads in mutual disbelief, tears welling up in our eyes. We’ve seen her like this in the hospital four times in the last two years. Why must this woman we love and admire so much endure what she is going through?
The priest comes to visit. He has already administered Last Rites. He understands that of course we wouldn’t want to do CPR or tube feedings, but he says withholding fluids in the IV would be a different story, and not condoned by the church Mother has been so strongly devoted to all her life.
The doctor consults with us. He can treat the MRSA with another antibiotic in the IV. She is almost fully hydrated again. How long? Six months?
Mother of God, why?
Every time I have seen her in the past two years, I have thought it would be the last, but at every crisis, treatment has bought her another six months.
Ten years ago, she lived with me for a while. With some assistance, she was still taking care of her personal daily needs then, although dementia and anxiety were causing her mental ability to fade in and out. She had purchased a prepaid funeral plan years before and carefully went over the details of it with me. She made sure both Ruthie and I knew where these papers were, and whom to contact with them when the time came. She had always been meticulous about planning ahead.
Finally, I remember. There was another paper she had shown me. She called it an “Advance Directive.” Where is that paper? Ruthie and I look for it among the files we have, but we can’t find it. It must be in her medical chart. We ask at the nurse’s desk.
They find it and bring us a copy. It has been with her chart since admission to the nursing home eight years ago. No one has ever looked at it. No one has ever even looked for it. No one has ever asked what she wanted.
It is very clear and detailed. She describes the conditions under which she does not want life-prolonging procedures administered: conditions she has been living with for five years. When these conditions are met, she specifically rejects even antibiotics and IVs, “even if this allows me to die.” Medication to relieve pain or provide comfort is to be given “even if it may hasten my death.” She worked in a hospital. She knew what she did and did not want.
My sister and I read it⎯over and over again⎯sitting beside her bed. She moans weakly, and I cover her contracted hand with mine. Ruthie has tears on her cheeks, and a quiet sob escapes her.
We give the paper to the doctor. He looks doubtful. You aren’t comfortable with this, I say. He hesitates. I could be, he says. I could be. We give him time.
He returns an hour or so later. It is very clear, he says. She made it very clear. He gives the orders, contacts hospice, and prepares the paperwork.Now she lies in her bed at the nursing home. Comfort measures only. Do not transport. No IVs. No antibiotics. Morphine as needed. A few days, perhaps a few weeks, they won’t predict.
She knew me today. She asked in a clear but weak voice, “When are you going back to Colorado?” The first complete, lucid sentence I’ve heard her speak in a long, long time. Am I imagining that I hear relief and comfort in her voice?
Still, I can’t answer her with complete openness and honesty. I tell her I’ll be leaving tomorrow and will come back when I can.
I wish I had told her good-bye.
Helen Sperber’s writing has appeared in numerous publications, including Diverse Voices Quarterly, Sanskrit, Meridian Anthology, and Front Range Review. Her novel, The Blue Wildebeest, promotes active living in retirement. Website: www.helensperber.com.
Delmarva Review is a literary journal of national scope, with regional roots. The nonprofit review publishes compelling new fiction, nonfiction, and poetry from authors within the region and beyond. It is supported by individual contributions and a grant from the Talbot County Arts Council with funds from the Maryland State Arts Council. For copies and information, visit the website: DelmarvaReview.org.