Editor’s note: This is the 11th 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.
“After your death, you will be what you were before your birth.” — Arthur Schopenhauer
Elizabeth Cummings Browning has stopped suffering. She has beaten the brain wasting disease that tried to twist her personality into a grotesque mask, and she robbed the neuromuscular degeneration that threatened to make her a prisoner in her body. She would have none of that.
Liz, my wife of 23 years, died about 10:40 p.m. on May 23, just 12 hours after we made the decision to give her enough medications to ease her pain and allow her to sleep. I was at her side. I told her I loved her. Though I expected no response, she seemed to respond in kind. I leaped from my chair to listen more closely but couldn’t make out what she was saying. Then with a sigh, her spirit broke from the bounds of a body that had betrayed her. She was 53 years and two months old.
Liz was diagnosed with the behavioral variant of frontotemporal dementia in August 2012. The diagnosis was modified earlier this year to add motor neuron disease, also known as amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease.
Those of you following this column know that the disease altered Liz’s personality, making her suspicious and hostile to many. I privately titled my writings about her, “Finding Liz,” because I knew the disease only masked the loving woman I married on Oct. 13, 1990. In the past few months, I did find her. Her essence finally poked through the disease, and she returned to her sweet disposition. A temporary personal care attendant who’d spent just a day with her said she was “absolutely delightful.”
And so she was. But the ALS wouldn’t give up. Liz began falling down in the past few months. She’d have mysterious bruises. And they hurt. She could not sit comfortably.
But the worst thing was watching her try to eat or drink. She’d grab a cup with her left hand, slide it to her right, bend down to put her lips to it, then extend her back to drive her head and clutching hands up and back. She’d get a sip. She’d hold it in her mouth, but the muscles that control swallowing wouldn’t respond. When she opened her mouth or smiled, the liquid would fall down her chin onto her chest and into her lap. Food stayed in her mouth as she tried unsuccessfully to chew it. If she swallowed at all, it choked her. I did the Heimlich maneuver on her to dislodge a crab ravioli, one of her last meals. The fat, luscious pillow popped out whole.
She’d weigh herself several times a day. She had dropped to 110 pounds from her usual 130 and remarked that she had to gain some weight.
Liz asked me one night as she was settling into a morphine-induced sleep, “Is Elsa home?” I said yes, our daughter was home from college and that she was going to take over caring for her while I was at work. Liz nodded, smiled and drifted off. But the wretched coughs continued, wracking her body through the night.
Liz began falling more often. A few days before she died, she keeled over and cracked her head on a metal furnace intake in our bedroom. But you couldn’t keep her down. She went for long walks around her favorite lakes with her sister Margaret Cummings and her friend Faye Fisher Ward, leaving them both in the dust.
Elsa and I started following her around the house to catch her as she stumbled around.
No Longer Able to Play Piano
Despite it all, she’d been able to keep playing the piano, an instrument she fell in love with at age 4. Then, two days before she died, she just couldn’t get started on one of her favorite songs. She stood up, downtrodden, and walked unsteadily away. It’s the last time I saw her try to play.
I could not bear her suffering any longer. I called hospice, and we agreed it was time to use medication to knock Liz unconscious and ease her suffering. They said she would die in five to 14 days.
Liz had other plans. She died about 12 hours later. I figure that it was her will that kept her going long after her body betrayed her, and once the drugs gave her permission to relax, the body just gave up.
A hospice nurse arrived at 1 a.m. on May 24 and pronounced her dead, making it official.
Life is a Loan
I hadn’t read the philosopher Arthur Schopenhauer in decades, but something compelled me to pick up his book of essays and aphorisms a few days before Liz died. I found her in a chapter titled, “The Indestructibility of Being.”
“What dies goes to where all life originates, its own included. From this point of view, our life is to be regarded as a loan received from death, with sleep as the daily interest on this loan. Death announces itself frankly as the end of the individual, but in this individual there lies a germ of a new being,” Schopenhauer wrote.
“One can thus regard every human being from two opposed viewpoints. From the one he is the fleeting individual, burdened with error and sorrow and with a beginning and an end in time; from the other he is the indestructible primal being which is objectified in everything that exists.”
Liz, of course, wouldn’t hesitate to correct Schopenhauer.
I can hear her now: “You mean ‘She,’” Liz would have told him.