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by
Jennifer Lee
April 11 and Roberta Schwarz knew her sister Janie would not live to see her 62nd birthday on September 24. For over a year, Janie had been misdiagnosed with myasthenia gravis and only two weeks ago—after her mother’s funeral— she was correctly diagnosed with advanced Amyotrophic Lateral Sclerosis. The doctors had advised her to start preparing a bucket list. So why not have an early birthday party for Janie, Roberta thought. Due to her ALS, Janie had a hard time swallowing and could no longer eat solid foods. Why not make it a Jamba Juice party—no food allowed. Janie could not eat, but she could enjoy a smoothie just as well as anybody. Roberta called the family, and everyone agreed to meet at the Jamba Juice in San Clemente. There would be balloons and presets – a proper birthday party. Janie would love that, Roberta thought.
Roberta had put Janie down for her nap earlier. She usually became tired in the late afternoon and Roberta always knew it was nap time by Janie’s wobbly gait. With her sister asleep, Roberta could now run errands. She had already started a list on her legal pad with an endless amount of things to do. Roberta’s brother Don and her husband Ed were in the kitchen discussing what they needed to do for Janie when they heard a loud thud, like something crashing to the ground. Roberta dashed to the hallway and saw that their five-level shelf had fallen over, sending dozens of knickknacks scattering. Next to the shelf, Janie lay flat on her back on the ground. She looked up at Roberta, her eyes wide. Roberta gently propped her up. Three drops of blood stained the carpet behind Janie’s head.
Roberta would later learn that Janie had gotten up to go the restroom. After taking a few steps, she had fallen back, grabbed the shelf on the way down, and hit the back of her head on the sharp edges of the wall heater. Janie had always been perfectly capable of going to the restroom herself, so Roberta could not understand what had happened. Roberta knew that caring for Janie would be a full-time job and she had accepted that responsibility. At least two people would care for Janie around the clock. But those same two people were in the house when the fall happened. How was Roberta going to be able to take care of Janie? How could she do this?
April 4: One Week Earlier
The phone rang as Roberta sat in front of her computer in her Portland, Oregon home. It was Janie’s social worker calling. Janie received Medi-Cal, so a social worker would occasionally visit Janie’s home to see if the health care she received was adequate. How nice of the social worker to call so close to the end of her shift, Roberta thought. It comforted her to know that Janie, who lived 1000 miles away in Hemet, California, was in good hands.
“Janie and Shawn’s trailer home burned to the ground,” the social worker said. Shawn was Janie’s son.
Roberta panicked. The first thought that entered her mind: “Are they okay?”
“I’m so sorry. I thought you knew,” the social worker said. “I should have known better than to have that be the first thing out of my mouth.” She informed Roberta that Janie and her son Shawn got out safely, but the fire had completely charred their trailer home in Hemet. Now Janie and Shawn were staying at a Super 8 Motel courtesy of the Red Cross. Janie’s dog Lacey ran out first, but her two cats could not be found, although neighbors saw one cat fleeing from the window, which was engulfed in flames. Janie’s close friend Fran, whom she had known for thirty years, had recently passed away and Janie had lit a candle to remember her. Janie walked out of the room to talk to Shawn and the candle had caught on something. The whole trailer was gone. Well, not entirely gone. The family was responsible for hiring someone to safely dispose the remains of the trailer. The social worker and Roberta talked for three minutes.
Roberta digested the information. She last saw her older sister at their mother’s memorial service two weeks ago. They had talked about Janie moving closer to the family after she was diagnosed with ALS so that she could be well cared for.
Janie and Roberta were six years apart and they had different groups of friends while growing up. When Janie was 19, her father had struck her and kicked her out of the house because she had become pregnant with Shawn. Roberta, who was 13 at the time, thought her sister would eventually come back home. Janie never did. The two sisters lived separate lives and saw each other once a year on their mother’s birthday. Their mother, who lived to be 93, loved to gamble, so Roberta and Ed flew to San Clemente every year and drove her to the Pechanga Resort and Casino. Janie came from Hemet and met them there.
Now things would have to change. Roberta knew that Janie needed to be closer to family because of her diagnosis, but the fire now forced Janie to move to San Clemente to live with their brother Don. Roberta would help Janie rebuild her life by getting her a new bank account and new identification because her paperwork had been destroyed in the fire. Roberta would also need to find a home for Lacey because the apartment complex in San Clemente where Janie would be living did not allow dogs.
First things first—Roberta had to go be with her sister. She called to her husband Ed in the next room and told him what had happened. They booked a flight from Portland to San Clemente.
April 10
Roberta and Ed arrived in San Clemente . After stopping at her brother Don’s apartment , the three headed to the Hemet Super 8.
Roberta’s heart sank when she saw Janie. The doctor had said that Janie had months to live, maybe years, but Roberta knew it would be less time than that. Janie had drastically deteriorated since their mother’s memorial service. While 75 percent of ALS patients experienced “limb onset,” which affects the mobility of the limbs, about 25 percent of cases were “bulbar onset.” Janie fell into the latter category. Nasality and loss of volume in the voice were usually the first symptoms. Difficulty swallowing and the loss of tongue mobility followed. Janie had completely lost her ability to speak about a year ago, using only her pen and notebook to communicate.
Roberta knew that the shock of her mother’s death, uncle’s death, friend’s death, and now the obliteration of her home caused Janie’s dazed appearance. She couldn’t look anyone in the eye. She looked halfway to another world. Yet Roberta also knew that another part of it was due to Janie’s 20-year addiction to hard-core painkillers.
At their mother’s memorial service, Janie had written a poem for her mother but she was unable to read it due to her illness, so Shawn spoke for her. Even before Shawn started to speak, close family and friends took one look at Janie and knew that something was very wrong. Her eyes were blank and expressionless, a look Roberta described as haunting. After the service, Roberta talked to Janie’s neighbors in Hemet who said they had seen Janie falling-down drunk. She was binge drinking and taking as many pills as she wanted.
Roberta feared the combination of drugs and alcohol would eventually kill Janie. She knew her sister did not have much time left, but she wanted to prolong her life as much as possible. Janie had survived deaths and fires, and to lose her to an overdose would be too devastating, Roberta thought. So Roberta made up her mind. She wanted her old sister back and the only way to do that was to regulate Janie’s medications, giving her only what was prescribed. She would also get Janie on a healthy diet, reduce her smoking and take her for walks along the beach, which was only one mile away. Whether she did this out of denial or love—or both—Roberta was determined to stretch out the last days she had with Janie for as long as possible.
After the drive from Hemet to San Clemente, everyone got settled in. Roberta and Ed walked Lacey and then put her in the garage. The landlord had allowed Lacey to stay one night, but tomorrow she would have go to Paws Pet Resort and stay there until they could find her a home. (Janie had adopted Lacey about two years ago when her former dog Goldie died. Goldie had lived with Janie for 16 years.) After Roberta walked Lacey, she got Janie ready for bed. Janie could no longer speak. Roberta had to communicate with her through writing. She would verbally ask Janie questions, and Janie would write down her answers in a notebook.
After Roberta put Janie to bed, she talked to her brother Don about locking up Janie’s meds. Roberta couldn’t bear to see Janie’s drug-addled expression any longer and she wanted Janie alert during her last days. So together, Roberta and Don placed 16 bottles of medication in a lockbox and put the key in a safe place. She would get only the amount prescribed. Janie would be mad as a hornet, Roberta thought, but she needed to do this.
Just as Roberta predicted, the next morning Janie woke up and asked for her medication, specifically “the white ones.” She was referring to the hydrocodone pills, which were two levels weaker than morphine. Roberta explained to Janie that she would only get the amount the doctors prescribed. No one knew until later, but Janie called the police.
Ed was busy writing out Janie’s morning, midday and evening prescriptions when two police officers approached him. Janie’s prescription bottles littered the patio table. The officers questioned Ed, Roberta and Don and asked to see all of the pills.
“Wait a minute,” one of the officers said. “Even if you were giving her exactly what the prescription says—which you are claiming that you’re doing—there are 30 missing hydrocodone.”
Roberta looked at Don. Don looked at Roberta. My God, only three days had transpired from the time the prescription was filled until the time we started caring for her, Roberta thought. Three days, 30 pills. Roberta had not counted pills. Janie had taken 30 in three days. Roberta felt like the wind had been knocked out of her. She remembered that Janie’s doctor had told them that 30 pills had killed one of his patients. If Janie had taken them all at the same time, she would have died, too. Roberta shuddered. She and Janie did not have much time left, but she would not allow drugs to cut that time short.
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