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Janie and Roberta
April 11
Roberta held Janie in the back seat. When she saw that the blood kept flowing after Janie fell in the hallway, Roberta decided to take her to the hospital. Roberta helped Janie into the back seat of the car and Ed drove them to the San Clemente hospital. Try to relax, Janie. Try to stay awake. We are going to have the doctors at the emergency room make sure you are okay, Roberta told her.
They finally arrived at the hospital at 6 p.m. and Roberta was relieved to see her niece Erin’s best friend Robin on duty. Robin got Janie admitted right away. The doctor ordered x-rays because Janie’s neck hurt and he wanted to make sure the pain was not caused by the fall. Janie needed five staples to her head.
Roberta knew it had also scared Janie that she could no longer walk without falling. Roberta needed to come up with some sort of system. She decided to put a bell on the table next to Janie’s bed so if Janie ever needed something, she would just ring.
After two hours, Janie was discharged. Roberta wheeled her into the waiting room where the family waited with presents and balloons that said “Happy Birthday.” Janie was going to get her birthday party.
Aside from a sweatshirt and a denim purse, the most popular present Janie received was an assortment of bras. She had said that she needed bras after her entire wardrobe burned in the fire and that’s exactly what she got. Black, white, magenta, lavender—Janie now had many to choose from. Since she had so many, Roberta thought a photo should be taken to show them all off. So the four women of the family, including Janie, put the bras on over their clothes and smiled for the camera. Janie was laughing and having a hoot. She would later write that this was the best wardrobe she had ever had. Janie sounded the most like Janie when she laughed, Roberta thought. She was getting her old sister back.
They returned to the apartment at 9 p.m. Roberta got Janie ready for bed and helped her use her walker. Roberta took one step to let Janie go. Janie pushed the walker away, took one step and fell back on her head that had five fresh staples in it. Are we going to have to go back to the hospital, Roberta thought? Luckily she didn’t see any blood, so the best thing to do was to get Janie to bed. Roberta helped Janie to her room, tucked her in, touched her nose and kissed her on the forehead goodnight. She would do this every night.
Roberta did not know it then, but Janie would have only 17 more days to live.
April 16
Almost a week had passed since Roberta had arrived in San Clemente. Roberta was still getting used to Janie’s lack of mobility and strength while Janie was getting used to her sister telling her to drink water from a blue plastic cup. Janie rolled her eyes and chuckled. Although she could not say it, her bright blue eyes conveyed a combination of annoyance and love.
Much to Janie’s dissatisfaction, Roberta was trying to bring reduce chain smoking to a minimum. Janie had been smoking for almost 40 years, and Roberta understood it would be cruel to make her quit now. So they compromised. Roberta got Janie down to five cigarettes a day. That was good enough for her. There was no time for silly fights. Every moment mattered.
The two sisters who up until recently had only seen each other once a year now spent every minute together. Roberta took Janie to the bank and the DMV, everywhere she needed to go to reestablish the things she had lost in the fire. While waiting in the long lines, they laughed and reminisced. Roberta told Janie about her favorite memory of her. One year the carnival came to town and Roberta had spent a lot of time and money trying in vain to win a stuffed animal. She eventually gave up and returned home empty-handed. She cried as she told Janie about her attempts. Seeing this, Janie gathered up every penny she had and walked a mile to the carnival to try and win the stuffed animal for Roberta. Roberta couldn’t remember what stuffed animal it was or even if Janie had succeeded, but this was how she would always remember Janie.
Roberta and Janie communicated the most at breakfast and lunch. Janie would choose whichever liquid she wanted and take her medication with, which Roberta would grind it up and put in her applesauce so she could swallow it more easily. While they did this, Roberta browsed through old photo albums and Janie picked out the ones she wanted to have. They would laugh over some of them together including a picture of Janie in high school, all dressed up, sitting on the lawn like a bathing beauty. There was also a picture of their 92-year-old mama, dressed in pink, her favorite color, sitting at the slot machine in Pechanga with a smile and a big thumbs-up.
Mealtime was particularly difficult one Friday afternoon. Janie’s breathing had become more labored. Recently, she had been unable to eat solid foods and relied on liquid nutritional supplements. The second neurologist who delivered the news about the ALS to Janie told her she was one of the “lucky” ones because the disease would take her quickly. Roberta wasn’t so sure if that was lucky.
Janie sat at the kitchen table waiting for her next meal. Roberta tucked a towel into the collar of Janie’s shirt and placed one on her lap to keep the mess to a minimum. Janie’s throat had become more constricted, the slow paralysis associated with ALS taking its toll. She often had a hard time keeping everything down. Twenty cans of Ensure, a nutritional meal replacement shake, occupied space in the fridge along with Trader Joe’s organic yogurt, Janie’s favorite. She had yet to find a flavor she didn’t like.
“Ensure? You want a little Ensure?” Roberta asked. Janie gave Roberta a thumbs-up. Grabbing a can from the fridge, Roberta popped the top and handed it to Janie. Janie reached out, her hands adorned with four silver rings, her metallic maroon nail polish still intact from her recent manicure. Janie took it and began to sip. Roberta began to rearrange things in the kitchen to look like she was doing something. She knew Janie liked to do things herself, but that couldn’t not keep her from occasionally glancing over at Janie from time to time, making sure she was doing all right. Janie began to cough and drops of Ensure dribbled onto the towel around her neck. Roberta rushed to Janie’s side, wiping her mouth with a tissue. “Are you all right, honey? My timing must be off today. Are you gonna shoot for the ceiling?” Janie laughed. Roberta started laughing herself. That was their inside joke. That was how they got through the day.
Laughter was the best remedy. The night before Janie had been sipping cranberry juice and the juice went everywhere. “Good! You almost made the ceiling!” Roberta joked.
Roberta knew she would eventually have to return to Portland but she promised Janie that she was not going anywhere until Janie’s new care provider was trained, not only when it came to Janie’s daily routines, but also how to make her laugh or calm her down. One tactic that Roberta devised was to put up a picture of a place Janie would like to be. Currently, a picture of vibrant fuchsia flowers taken on a past trip to Kauai rested against a water bottle on the kitchen table. Whenever Janie became anxious, Roberta told her to look deep into the picture, envision herself there and breathe slowly.
That seemed to work today as Janie continued to sip on her Ensure, her breathing more at ease. Roberta went back to cleaning the kitchen. She noticed the box of chocolate pudding her brother just bought for Janie, picked one up one and said, “Janie, would you like a pood-ing cup?” in her best British accent. Not only did Janie love pudding, but she loved the way Roberta asked her if she would like some pudding. She also loved the fact that Ed was considered the “King of Pudding.” Janie couldn’t get enough. She was laughing and Roberta laughed as she used one hand to wipe Janie’s mouth and another to hold her hand.
Roberta knew that she could not stay with Janie forever. She knew that their time was limited. But she had promised Janie that she would not leave until they found the best care-provider possible. Roberta made this promise when Janie wrote in her notepad: “What will I do when you and Ed both go?”
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