Still, Matt and Vivian did make new friends within the support group, friends who could commiserate. Plus they had found out about available county resources like Community Support Services (CSS), paid for by the government. As mentally disabled, Steve qualified for Medicaid and Social Security Income. Part of the “tough love” message had begun to take hold. Maybe some of the burden would be lifted or at least shifted? Maybe they could make him get involved in CSS as a condition to live at home, but only through gentle prodding, never as a harsh ultimatum. They knew their son. Through the vocational department at CSS, he could work part-time with a supervised team and earn minimum wage. He’d be assigned a case manager to meet with on a regular basis, go out for iced tea or lunch, someone who’d organize a work program, someone to be his advocate. Things were looking up.
By the mid-eighties, Steve had a case manager he seemed to like, worked three evenings a week as a janitor with a group of his “peers” (the mentally ill and/or addicts in recovery), which he hated. But to please his parents, he went. And he was taking his meds more regularly. Maybe Steve had turned the corner.
Heavy footsteps came from the stairs behind. Steve opened the door and entered the dining room. Sammy approached him and Steve almost stepped on him. “Geez, I didn’t see him,” he laughed nervously. “At least he didn’t bark at me. Does he bark a lot?”
“Only at strangers who come to the door,” Nancy said.
“So will he bark at me? Aren’t I a stranger?”
“Not anymore. He knows you belong here, so you’re okay.”
Steve squatted on his toes, knees wide, and petted Sammy. “I think he likes me.”
“He does! He can sense who to trust right away,” Nancy said.
“Let’s show Nancy and Lisa around the house,” Sylvia said to Steve. “I want to go over a few things that Nancy will need to know.”
“You don’t need me for that, do you? I want to go to Friendly’s.” Steve went several times a day, for two hours at a time, to his favorite restaurant chain known for its ice cream, where he drank iced tea, smoked cigarettes, and chatted with the waitresses who knew him by name. His Cheers bar without the alcohol.
“Just stay for a few minutes,” Sylvia said.
“For what?” he asked.
“I wanted to show Nancy your pill tray and . . . “
“I do my own meds.” Steve peered at his senior photo in Nancy’s hand. “What are you doing with that?”
“I wanted to see if you were as good lookin’ as Adam said you were.” She handed the photo back to Sylvia. “He was right. And you still are!”
Steve rolled his eyes then looked at his protruding belly. “No, I’m not. I’m fat now. Can we talk about something else?”
“About your meds—I just want Nancy to remind you to take them and to fill your tray.”
“I know I have to take them.”
“In case you forget though, or fall asleep. It’s important not to miss,” Sylvia said.
“I hardly ever miss,” he said.
“How about if I leave you a note when I go to work?” Nancy asked.
“I like notes,” Steve said. “I write myself lots of notes so I won’t forget things or when I take a phone message because Dr. Rita told me it would help me remember.”
“Me too,” she said. “It’s the only way I can remember anything. Maybe we can write a grocery list, too, so I know what to get.”
“As long as you do the shopping. I hate shopping.”
“Nancy even works in a grocery store. She’s definitely going to do all the grocery shopping,” Sylvia told him.
“I like kielbasa sausage and BLTs,” he said. “Can we get Coke? Dad wouldn’t buy it. He called it swill.”
“I love Coke. I have one every morning instead of coffee.” I’m on a roll, Nancy thought. His needs seemed basic enough. All she had to remember was to keep it simple and stay upbeat. She was feeling more elated by the minute, just thinking about not having rent to pay, or utilities, or phone. Since she was buying food for Steve and cooking, maybe she wouldn’t have to pay for groceries either. She held up a french fry for Sammy, which he snapped right up.
“Let’s show her the basement,” Sylvia said. They all went downstairs. Notepad in hand, Sylvia began in the laundry room, explaining the broken water level in the washing machine and how it would overflow if you didn’t know what to do.
“Dad never let me do my laundry,” Steve said. “I tried once and water was all over the floor.”
“I have a new washer that my old boyfriend bought me,” Nancy said. “When I move in, Lisa’s husband can install it and get rid of this one,” she turned to Steve, “and I’ll teach you how to use it so you can do your laundry.”
Oh brother, Steve thought. I don’t want to learn how. What if I break her machine? “I don’t know. I’m kinda slow. It might take me too long to learn. Don’t you have to separate colors and stuff?”
“We’ll take as long as you need,” Nancy reassured him. “Don’t you worry about it.”
Sylvia showed them the rest of the basement, the fuse box, furnace, and water heater. They decided that Nancy could move all of her belongings in the main area, a large, linoleum-tiled rec room. They went back upstairs, and Sylvia explained a few more things like the thermostat and switching it to cool for the air conditioner in summer. She was glad it was winter and didn’t have to think about lawn care, weeds, and trimming the bushes. They sat in the living room, and she showed Nancy a list of who to call for household repairs.
“My husband’s a pretty good handyman, if anything needs fixin’,” Lisa offered.
“Speaking of need,” Nancy interrupted. “I was wondering if you’ve thought about selling your dad’s car, because I don’t have one.”
Lisa looked at her Mom, “I told you I’d let you have your old one back.”
“Oh no. I’m no Indian giver,” Nancy said.
“I haven’t had a chance to think about it yet, but I don’t see why not,” Sylvia said. “What do you think, Steve?”
He hated to think of someone else driving his dad’s car. His burgundy Chrysler with matching leather interior. Dad loved that car, got it for a song, he said, from the bank like he always did. Never bought a brand new car—said it was a waste of money.
“Steve?”
He shrugged. “Do what you have to, Sylvia.”
“It seems like a waste to have a car just sitting in the garage, don’t you think?” Sylvia asked.
“Yeah, it would be a waste I guess.”
“Why don’t you give me a price,” Nancy said. “I can’t pay for it all at once, but if you’d be willing to take a monthly payment, I think I could swing it.”
More and more, the situation was becoming a win-win. It was apparent that Nancy really wanted this to work and so did Steve. They discussed particulars, like setting up a joint checking account for Steve and Nancy, to pay for groceries and necessary repairs. With Nancy’s help, maybe Steve would learn how to write a check again. He had a monthly Social Security benefit deposited directly into his savings for personal expenses: cigarettes, gas, fast food, and, of course, the iced tea that he drank by the quart at his local spots. Since he didn’t know how to use an ATM card, he got cash the old-fashioned way. He went inside the bank branch, where the tellers knew him, and filled out a withdrawal slip.
Sylvia would handle all the household bills from a separate account which, for the most part, would be automatically debited. As trustee, her name had to replace her parents’ names on all accounts and documents, but the family attorney would guide her through the process. There was a lot to handle to set up the new situation, but Sylvia sensed it might work—it had to. She took profound comfort in the willingness her brother was showing, as if he was slowly realizing that with both parents gone, without them to rely on and take care of him, he’d have to rely on himself more than ever before. Nancy was there to walk him through the transition, to be his safety net, but ultimately he had to
gain some independence and self-reliance, and little by little, maybe learn how to live as a man, perhaps for the first time in his life. Was she being too optimistic? Or in denial that he could continue to get better, well enough to be on his own someday?
She was beginning to understand how her mother had become hopeful after a few “good” days, thinking he was over the hump, hoping the worst of his illness was behind him. Up and down, up and down. She remembered her mother’s tearful phone calls: Steve won’t take his meds; Steve hasn’t talked to us for days; Steve won’t come downstairs; Steve won’t take a shower or change his clothes or smoke outside. Wasn’t Sylvia doing the same with her own son? After a few days, then weeks, and finally a few months of sobriety, she started thinking his drug use was behind him, that he wasn’t like other addicts. Then he’d relapse and go missing again, and she’d fall into despair. Her son’s ups and downs had swallowed her whole. Maybe her brother’s lifelong illness would help her to accept her son’s, and she could start living again? She was learning how to hope but not to expect. There was always hope, and she’d never stop hoping for a better life for both of them.
5
Nancy moved in a week later, as scheduled. She transformed their parent’s bedroom on the first floor from the sixties-style Mediterranean décor with burnished brass mirrors and family photos in antiqued wooden frames, to a version of early American, with a faux brass bed, cross-stitch printed quilt, and plastic flower swags along the top of window sheers shirred on wooden rods. Ceramic animal knickknacks and perfume bottles covered every square inch of surface space. Where stacks of books used to sit on the bedside stand, there was now a video game console. Sammy’s dog bed was tucked under Nancy’s, and his food and water dishes sat on a plastic placemat next to the closet. The room was jam-packed. The rest of her furniture (along with Steve’s parents’ bedroom set) and a dozen or so Hefty trash bags stuffed with her other belongings filled the rec room portion of the basement, making it necessary to weave around or step over to get to the fuse box on the far wall.
Nancy was gone a lot. Her commute to work was forty minutes, one way. If her shift started at noon, she wasn’t home until almost nine, but a Crock Pot supper would be simmering all day, ready for Steve by dinner time. Other days, she might start at eight and be back by five. She left daily reminder notes for Steve, because she didn’t know her schedule enough in advance to put it on the large desk calendar Sylvia had set on the kitchen table. Even so, Steve began calling her at work several times a day to make sure nothing had changed, or she might call him before leaving, asking if he wanted something from the store, or to say she’d be late because she needed to babysit for her grandchildren, which she often did on her days off.
Steve wasn’t used to so much distraction. Or to being left alone for so many hours at a time. And now he was in charge of letting Sammy out several times a day. Already the carpet was soiled throughout the house from his numerous accidents, which Steve dutifully reported to his sister, “I gagged and almost vomited when he did number two! I had to pick it up with a paper towel and throw it in the toilet.” Sometimes Steve thought it was his fault. “I guess I was asleep and didn’t let him out in time.” But mostly he seemed to enjoy Sammy’s company. “I like to play with him. I think he likes me. He even sits in my lap.”
Nancy invited Steve to her son’s house for Christmas dinner with her kids’ families: two grown married sons, Lisa and her husband, and five grandchildren all under the age of five. The oldest son lost most of one leg in an auto accident when he got drunk and hit a tree, although Nancy never believed that her son was drunk. “It was two in the morning,” she’d say. “He just fell asleep at the wheel.” He wore a prosthetic from the knee down, but he needed crutches to walk. He couldn’t find a job, so he watched his two toddlers while his wife worked as a waitress and bartender.
Steve changed his mind every other day about going, I don’t know them. What will we talk about? I can’t stand little kids. They can’t sit still. They cry at Friendly’s and make me nervous. If I go, I probably should get presents for them. I’m not going. He’d think about a nice big dinner and decide to go then he’d wonder if he’d like their food and decide to stay home, play it safe.
“You worry too much, big guy,” Nancy said. “You don’t need to bring presents, and you can see how you feel on Christmas day and decide then.”
Nancy tried to help Steve lighten up, but there were just so many things for him to sort through. He’d have to ride with her and the son with the missing leg and his two little kids, since he might get lost if he tried to follow them in his car—it was all the way to Canton, a half an hour away. But if he rode with them, he’d be trapped. He couldn’t leave until they did, which could be all day and evening. “Will they let me smoke in the house?”
“No, but you can smoke in the garage or outside. With me.” Then she told him the dinner menu: roast turkey, ham, mashed potatoes and gravy, corn, green beans, Pillsbury crescent rolls, and enough for seconds and thirds.
“Sounds so good,” he said. “Can Sammy come?”
“He can ride in your lap in the car if you want,” she said.
Two days before Christmas Steve made his decision to go, and he didn’t waffle. He even laid out his dark brown cords, light green oxford shirt, and red cable knit sweater. After all, it was Christmas. Nancy’s family was warm and engaging, and he found the usual male conversational bond with her sons: sports. Steve could quote names, dates, and statistics as far back as the sixties, and they seemed to really want to know about his running days as the local track star. The kids would’ve driven him crazy (except he already was), so Steve escaped outside throughout the day. Nancy couldn’t find him at one point and asked if anyone knew where he’d gone. Finally Lisa spotted him lying down in the snow by the garage, leaning on one elbow, smoking and quietly mumbling to himself. Odd as it was, no one seemed concerned. They just left him alone until he was ready to rejoin them.
After the holiday, Steve slept for almost two days straight, barely up long enough to eat or smoke. Sammy had more accidents, but Steve was used to them now. He was too tired to clean up after him though. Nancy’ll do it when she gets home, he told himself. It’s her dog anyway.
As winter wore on, the skies were gray for days on end and the temperatures dropped into the teens much of the time. Freezing rain covered the roads off and on, or enough snow fell to make it difficult to get out of the driveway. Nancy found someone to plow it for thirty dollars. Steve showered less, chain smoked, and wore the same clothes a week at a time. His plaid flannel shirt was torn at the elbows, and his hair was growing over his ears. Nancy wanted to help him but didn’t know how. She figured he was lonely and depressed and that his parent’s deaths were finally catching up with him, especially if he thought he was responsible somehow. After all, he was the one who first found his mother collapsed on the kitchen floor and called 911, then made the same call for his father when he struggled for breath and, unable to stand, crawled on his hands and knees to get into bed. Each died in the ambulance on their way to the hospital.
When Sylvia called weekly to check on them, Nancy painted a rosy picture. She didn’t want to alarm Sylvia or lead her to think the living arrangement wasn’t working. Nancy needed it to work, so she called Dr. Rita, who simply told her winter was always the hardest for him and down cycles like these were part of the illness. Even though she felt guilty, Nancy began retreating to her room to eat dinner because she couldn’t tolerate Steve’s eating habits. He bent over his paper plate and shoveled it in, never looking up. When she tried to make light conversation or cheerfully asked him about his day or Sammy, he grumbled that he didn’t like to talk while he ate, and she remembered that he’d said he preferred to eat alone. He’d probably feel more comfortable without her sitting there. But the final straw was his runny nose dripping onto his food—she was gagging and had to leave the room. Besides, she had all her TV shows to catch up on or video games to play, someth
ing to pass the dreariness of her days. Soon Steve took his dinner upstairs to his room, so they never ate together.
Steve was spending more and more time in his room, which made her worry that she wasn’t capable to care for him. Until one day she had an idea for him. “Maybe you’d like to move into the downstairs bedroom. Sammy might not be so lonely and could find you better.”
“I might like that, and since Sammy can’t climb the stairs,” Steve said. Sammy was too small to manage the steep steps. “But what about my clothes?”
“We can move them down,” she said. “We could start right now.”
“Maybe later,” Steve said. “It’s so much work. I’m too tired.”
“Just leave it to me,” Nancy offered. He agreed, and she went ahead without him. If he didn’t like it, he could always go back upstairs, but she had to try something. She made up the bed, transferred some shirts and pants to the downstairs closet, put his underwear and socks in the small dresser, brought his toothbrush, comb, razor, and shaving cream down to the bathroom between their bedrooms. That night he slept in his new room, never to return upstairs again. Every night she called out, “Good night. Don’t let the bedbugs bite!” And he began saying it back to her.
Sometimes Nancy talked Steve into watching a movie with her on video—she had quite a collection of VHS cassettes: all of Doris Day and Rock Hudson, most of Katherine Hepburn and Spencer Tracy, Abbott and Costello, Disney movies like The Lady and the Tramp, Snow White, and Bambi, and more current ones with Meg Ryan, Tom Hanks, or Sandra Bullock. Even though he usually didn’t sit through an entire movie, Steve seemed to feel more and more at ease sitting on her bed, eating popcorn, drinking Coke, and smoking cigarettes with Sammy sandwiched between them. Relieved, Nancy figured they might make it through the winter after all, even with a few laughs.
Just In Time Page 4
