Editor’s note: This is the 10th article in a Next Avenue series by Dan Browning about his family’s experience coping with his wife’s frontotemporal dementia (FTD). Preview the entire series here.
When I began writing this column, I thought I wanted to shed some light on a brain-wasting disorder called frontotemporal dementia (FTD), which strikes down people in the prime of their lives.
I know now that I am seeking forgiveness.
My wife, Liz Cummings Browning, has a particularly nasty variant of the disorder, called frontotemporal dementia with motor neuron disease (FTD-MND). The dementia results from protein tangles that gradually kill off her brain cells. And the motor neuron disease, essentially amyotrophic lateral sclerosis, or Lou Gehrig’s disease, is shorting out the nerves that power her muscles.
With luck, she will turn 53 later this month. It’s highly unlikely that she’ll see a birthday beyond that.
Liz was a fabulous singer-songwriter in the R & B tradition, and FTD has gradually stolen much of her voice and robbed her of the reflexes and muscle control involved in swallowing. I recently wrote about a 40-minute choking episode that seemed likely to kill her. She recovered, but it’s clear that she inhaled some of the saliva and rotting food particles that stick in her throat because her muscles no longer flush them into the esophagus. Her acrid breath now has a subtle gurgle to it as she sleeps.
Pneumonia can’t be far behind, her doctors say. When it comes, I’ve decided that I won’t give Liz the antibiotics that could cure it. Otherwise, she would only face a worse fate as she loses control over her bowels and bladder, the muscles that keep her dancing, and finally, those she needs to breathe.
This is what dementia often leads to. A choice between a slow, painful death, or a relatively quick one.
Before Liz began losing her mind, she filled out a living will. She asked that we withhold extraordinary means of life support. She left the decision on what that means to me.
It’s a moving target. At first, I thought I would give her oral antibiotics if she got pneumonia, but nothing intravenous. After her ALS diagnosis, I changed my mind.
I’ve learned the meaning behind the old saw that “pneumonia is an old person’s friend.” It provides an alternative to even worse suffering.
A study of 323 nursing home residents in Boston with advanced dementia and pneumonia helps explain why. More than 90 percent of them were treated with antibiotics, which extended their lives by an average of six months. But it also extended and deepened their suffering.
The study’s authors cautioned, “our results indicate that antimicrobial treatment for suspected pneumonia may be a double-edged sword, as it was associated with both survival and discomfort.”
Focus on Comfort Care
I attended a seminar for health-care professionals on end-of-life care at the recent Meeting of the Minds Dementia Conference in St. Paul, Minn. Lores Vlaminck, a hospice consultant, said that “all efforts of life extension in advanced stages [of dementia] … should be avoided.”
Caregivers should focus instead on comfort care. Lie in the bed where the dementia patient will spend much of his or her remaining time, she advised. What will the person see and hear? Examine the environment for noise, privacy, personal effects that may provide some peace of mind.
“How many of you have tasted Ensure?” Vlaminck asked. A number of people raised their hands. “How many liked it?” she asked. The hands all dropped. “So why are we giving them Ensure?”
Sheryl Conroy, a longtime hospice nurse in the Twin Cities, said tube feeding is almost never indicated, even for patients with dysphagia, the swallowing disorder causing so much suffering for my wife. Tube feeding itself can lead to pneumonia and fluid retention, she said.
Conroy and her staff try to help families understand that dementia is a terminal illness. The Centers for Disease Control figures it’s the sixth leading cause of death in the United States, she said. A study published since the conference disputes that figure, however, estimating from a study of patients 75 and older that Alzheimer’s disease alone is the third-leading cause of death in America. The study doesn’t even consider those Alzheimer’s patients felled at an earlier age, or those who died from other dementias.
Conroy says hospice staff must support family caregivers as they face the toughest decisions of their lives. Encourage them to do what they think their loved one would have wanted, she said. The goal is not to extend “the dying process.”
Dying in Peace
To that end, Conroy urges caregivers to avoid hospitalization. Half of all dementia patients admitted to hospitals with pneumonia or hip fractures, a common result of falls among the elderly, die within six months anyway, she said. Hospitalization unnecessarily prolongs suffering by exposing them to unfamiliar surroundings, noisy machines and needle pokes from intravenous drips and blood tests.
Her message, I believe, is that it’s better to die sooner, with more peace, in one’s own bed.
And when the dementia patient stops breathing or their heart gives out, Conroy said, let your loved one go. She said resuscitation is rarely appropriate for advanced dementia patients. The dramatic life-sustaining efforts of an emergency medical team won’t provide a peaceful ending and has just a 1 to 2 percent success rate, she explained.
Conroy called the use of antibiotics “a gray area” for dementia patients. It’s fine to treat eye or urinary tract infections, she said. But she questions the use of such drugs to fight chronic infections like pneumonia.
“Dying in the ICU hooked up to machines and tubes is usually an accident,” she said. “Dying at home, in one’s own bed, takes planning.”
Learning When to Let Go
It’s not easy knowing when to let go. Conroy said it’s important for hospice staff to listen to caregivers and health aides who spend the most time with the patient.
Liz’s personal care attendant, Barbara Dekrahn, has proven to be an astute observer since she started working with us last fall. We all have noticed Liz’s increasing use of the restroom. Liz denied having any pain, though, so we didn’t think she had a bladder infection. Her doctor said it might just be a compulsion resulting from the loss of cells in the frontal lobes of her brain.
Barbara, a 44-year-old Liberian woman with a heavy accent, said no. “It’s incontinence.”
I asked how she knew. “The smell. I wash her underclothes,” she said. “That’s why she’s taking so many baths.”
After I wrote about Liz’s choking episode, a co-worker asked me if I was really going to let Liz die without at least calling paramedics. I explained that I would do first aid, but nothing more. At this point, all I can hope for is a quick, natural death.
Making Decisions for Liz
Most of what we know about dementia comes from Alzheimer’s disease, which is by far the most common form. It typically strikes the elderly, robbing memories but leaving personas largely intact, even at the end stage when the patients can barely move and become delirious.
Liz, by contrast, is still very mobile. She may seem to tune into a conversation, but can barely get out any words. When she does, they are often the wrong words and it’s a guessing game to figure out what she means.
For instance, she might say, “Can’t you close my coat for me?” Meaning she needs help fastening her pants. She often seems confused and gets agitated easily. She can be talking to a friend one moment, then leave abruptly to take a bath or lie down.
Amid this chaos of communication, it’s my job to make life-or-death decisions for her, decisions that I think she would have made herself knowing that ALS is racing toward her with an anvil to crush her chest.
Living for Today
In Carlos Castaneda’s book, Journey to Ixtlan, Don Juan, the Yaqui brujo, says, “Think of your death now. It is at arm’s length. It may tap you any moment, so really you have no time for crappy thoughts and moods. None of us have time for that.”
Liz and I lived for today. She turned on a copy of our wedding video, as she often does now, and dropped an Al Green CD in her boombox and began swaying to his velvety voice.
“Let’s, let’s stay together…
Loving you whether, whether
Times are good or bad, happy or sad…”
We danced in the living room, and to my surprise, she remembered the words and sang along in a raspy, hushed voice.
I sang a verse and began to cry. Liz laughed. I have no idea why, and she couldn’t begin to tell me.
“I’m sorry,” I said, smiling now. “Forgive me?”
Liz smiled back and nodded. Turning to the wedding video on the TV, she said, “We’ve been married 23 years.”
“Not long enough,” I said.
VIDEO: Liz sings and sways to music.
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