Elaine Mansfield is a caregiver who poignantly shares her mother’s story and describes caregiver frustrations, including defending Alzheimer’s patients as they battle the heart wrenching disease.
By Elaine Mansfield
In 1998, a staff member at the senile dementia home in Rochester, New York found Mom passed out on the bathroom floor, bleeding internally, moving gently toward death. Mom’s second husband rescinded the “Do Not Resuscitate” order she had signed ten years before, overriding her clear intentions.
Mom endured four weeks in the hospital; transfusion after transfusion, followed by surgery, followed by incessant needles taking blood samples out and putting new blood and nutrients in her weak body. My polite mother who never raised her voice, screamed in protest and ripped out the IV lines. The medical team tied her arms and put thick mittens on her hands; but she escaped her restraints like Houdini. Then she bit the tubes in half.
“They’re trying to help you, Mom,” I pleaded as I lay across her fragile, flailing body, holding her so a technician could draw blood.
“They’re doing a lousy job,” she howled in my ear.
Two weeks after they discharged her to a new skilled nursing home, her husband called. Since her move, I’d driven the two hours to see Mom many times. She was traumatized and barely eating.
“They tried to put a new IV line in your mother, because the doctor says she is dying of malnutrition,” he said. “She’s fighting like a wild animal. They called the hospital to get a special nurse to sedate her and put the line in.”
What? No one mentioned this possibility when I saw her two days ago. Tie her down, sedate her, and terrify her again? The knot in my gut shrieked, “Absolutely not!” But somehow, I managed to speak in a calm, measured tone.
“Could you delay the intravenous feeding until the family has a conference call with the doctor?” I pleaded. He agreed. My brother, Jim, set up the call for the next morning.
The doctor gave Mom’s case history:
This laundry list of concerns didn’t even discuss her advanced dementia and combat-ready attitude.
She bit, scratched, and screamed; she ripped the stethoscope from the doctor’s ears. The doctor’s calm voice betrayed no feeling. I struggled to hold back tears. Finally, the doctor listed tortuous options, each sentencing my mother to months of medical invasion, sedation, and restraint.
“What would you do if this were your mother?” I interrupted.
There was a long pause.
“Sometimes I must speak as a doctor. Sometimes I must speak as a human being. They are not always compatible,” he whispered. “I would make her comfortable and call Hospice.”
“We could stop this medical intervention?” I ask.
“Yes,” the doctor said, and Jim agreed. And then my mom’s husband agreed. I was stunned. Suspended, I waited for him to change his mind, but he didn’t. We took a breath and thanked the doctor, our relieved words spilling out and crashing into each other.
A few days later, I drove to the nursing home to meet the new Hospice aide. Mom sat in her wheelchair, calmly studying the snaps on her blue flowered smock. She looked up with bewildered pale blue eyes and smiled for the first time in six weeks. She didn’t know I was her daughter, but she trusted me. I coaxed her to swallow tiny bites of pureed food and sip chocolate Ensure through a straw. Soon, she begged to go to sleep, moaning softly as the aide and I tucked her in. The wild woman had become a sweet baby girl.
“I like it here at your house,” she said quietly, her bony hand drawing a vague circle toward the white nursing home ceiling. I had a feeling she would stay for a while.
Does Elaine’s story resonate with you? How do you think we can change our system so that people battling diseases don’t need to suffer? We welcome comments below.
Elaine Mansfield writes about love, loss, and continuing bonds on her website. She is Hospice volunteer, leads bereavement groups for women who have lost a partner or spouse, and writes for the Hospicare and Palliative Care Services of Tompkins County newsletter and website.
View Elaine’s impressive resume that includes expertise on nutrition, preventative health, personal training, caregiving and healthy living. This fascinating lady is truly an inspiration!