AT DEATH’S DOORSTEP California social worker with ALS fights to guide her own destiny
LOS ANGELES — The dishes she used to scrub after each family dinner pile up by the sink. The husband who sweetly called her his trophy wife cries alone in the room where he now sleeps. The 11-year-old son with big, brown eyes who once cuddled on her lap now hardly comes near her.
She can’t move. She can’t talk. She can only blink.
Angie Bloomquist was diagnosed with amyotrophic lateral sclerosis less than two years ago. Since, the fatal illness known as Lou Gehrig’s disease has shut down just about every muscle in her body. The toll on her family has been almost as devastating.
“It’s like a tornado ripped through our home,” Angie says. “And destroyed everything we built.”
She speaks through a computer that tracks her eye movement, a painstaking task that exhausts her after a few sentences.
Still, in her final days, Angie finds herself pushing more than ever — for the choice to die through doctor-prescribed medication.
Proponents know it as “aid in dying.” Opponents call it assisted suicide. Since it was legalized in Oregon in 1994, there have been dozens of attempts to have similar versions approved in nearly 30 states, including Nevada. All have failed, except four: in Washington, Vermont, Montana and New Mexico.
In California, the issue hasn’t been brought before lawmakers or voters since 2007. This year, buoyed by the story of Brittany Maynard, who left her Bay Area home for Oregon to carry out her legally assisted death, supporters have geared up for another try.
One bill is making its way through the Legislature. Recently, two lawsuits were filed against the state that are aimed at legally protecting physicians.
Angie, who says she knew long before she was diagnosed that she would want to hasten her death if she became severely incapacitated, joined one of those lawsuits recently.
“I know how I want to live and know that that life is no longer possible,” she says. “The right to die should be my right.”
••• Angie’s symptoms began in early 2013, just before her 47th birthday.
The fingers on her right hand twitched and she had trouble typing. She became exhausted walking from the parking lot to her office at Miller Children’s Hospital in Long Beach, Calif., where she was a social worker. One day, leaving work, she inexplicably lost her balance and fell hard on a staircase.
In August 2013, after months of tests, Angie and Fred, her husband of 15 years, got the diagnosis: She had ALS.
“Myheartsankandmybodywentcold,” about what’s happening to Angie. But the Angie says. “Life as we knew it ceased to truth is, most days, they avoid the topic. exist.” “I’m not really the talking type,” Fred
The disease affects the brainsays.andthe spinal cord’s nerve cells. It eventually parHehastobestrongforAngie—awoman alyzes sufferers, while their minds almost who used to shush rowdy neighbors in her always remain unaffected. pajamas at 3 a.m. and throw bouncy cas
About 30,000 Americans live with ALS. tle parties for some 20-plus 5-year-olds. Half die within two to five years. BreathWhen he cries, he cries alone in his room, ing gradually becomes more difficult, and off the kitchen. often, patients suffocate. Cases like that That’s the thing about losing the girl of of famed theoretical physicist Stephen your dreams. Day in, day out, it hurts like Hawking, who has lived with the disease hell. for more than 50 years, are a rare excep“I’m not going to reduce her to a few tion. fanciful stories,” Fred says. “She was too
Angie, ever the realist, immediately vast, too great. She was a tidal wave.” began planning for her death. She had ••• spent 23 years as a social worker, the last The Bloomquists thought of going to decadeinhospitals watchingchildren fight Oregon, but qualifying for the law could futile battles against ruthless diseases. She take months. Angie also considered refushad guided families, preparing them for ing food and slowly drifting to her death their child’s death. through sedation, but that’s not how she
Now, the time had come to guide her wants to go. own. The lawsuit is being handled by attor
On a recent day, Angie rests in her usual ney Kathryn Tucker, executive director spot in the family’s television room. Fred of the L.A.-based Disability Rights Legal walks through the 112-year-old CraftsCenter, who’s overseen these kinds of cases man they share with their son, Andres, on a national level for years. and their two dogs, Viejo and Peanut. Proponents are ready to go to the bal
The sun is setting over San Pedro. The lot in 2016 if the pending legislation fails. jasmine climbing over the white picket Tucker believes a court decision is the best fence Fred and Angie put up years ago fills way for California to win approval. She’s their front yard with a sweet scent. had recent success with similar lawsuits in
Fred turns on the light in the first bedMontana and New Mexico and has anothroom. er one pending in New York.
“This is where the magic happens,” he Despite the traction supporters have says in a not-so-funny tone. “Or at least, it gotten recently, the issue faces great oppoused to.” sition. Doctors, Catholic leaders and some
Their former bedroom is now Angie’s disability-rights advocates object on ethiroom. It has two twin beds: Angie’s hospical, religious and medical grounds. tal bed and, next to it, a bed for her over“If assisted suicide is approved, it would night caretaker. result in many lives ending without their
Fred tries to be honest with Andres consent,” says Marilyn Golden, senior pol- icy analyst with the Disability Rights Education and Defense Fund. “No safeguards have ever been enacted or proposed that can prevent that outcome, which can never be undone.”
Golden says combining a profit-hungry health care system with assisted suicide could result in patients being denied care and steered toward dying. Heirs and caregivers could also become abusive, and mentally ill or suicidal patients who are not terminal would have few safeguards to protect them from killing themselves.
Tucker says if the lawsuit succeeds, those safeguards — such as requiring a physician’s second opinion and judging metal competence — would be left for doctors to decide.
As for Angie, attorneys say they plan to lobby the court for a special permission to help her die as soon as possible — at her home, with her family by her side. She entered hospice care recently and may not have more than a few months to live.
“She’s accepted that this disease has brought her to the doorstep of death,” Tucker says. “She just wants to be able to have a measure of control to have a more dignified and peaceful death.”
••• Each day after Andres leaves for school and Fred heads to work, Angie’s threehour routine begins. It takes her that long to move from her bed to the recliner in the television room.
Estella Ganuza, her morning caretaker, feeds her through a tube. It’s a struggle for her to not choke on her saliva.
Then, like a stork carrying a sleeping child, Ganuza uses a hydraulic machine with a giant sling to lift Angie’s limp body from the bed onto a commode. She wheels her into the shower, dresses her, combs her hair and transports her in the sling to her recliner.
Here, in the book-filled room where the family used to watch TV after dinner, she remains until night falls and it’s time to go to bed. Her loved ones have stitched together an around-the-clock schedule of care, with one relative watching over Angie each day of the week. They bring food, do laundry, wash dishes, sweep the floors. Fred handles weekends.
••• When Angie’s speech went away about six months ago, she felt Andres begin to drift from her.
Maybe it’s his age. Maybe he just doesn’t know what to say or how to say goodbye.
He goes to therapy, at Angie’s request. He likes to play and joke with Fred. He’s a bright boy who says he’s proud of his mother, above all else, “for putting up with me.”
After school each day, he bolts through the front door, straight into the room. “Hi, Mom!” he says. He leans over the recliner and, for the briefest moment, lays his head on Angie’s chest.
Angie closes her eyes.