She dragged her prescription pad toward her and started to write. “We’ve been seeing success with smaller doses given more frequently throughout the day. Fewer side effects like nightmares and restlessness. I’m also going to give you something to relax you, something to help keep your stress in check.”
Something to relax you. And thus it began. The slow march toward medicated numbness.
Contrary to what the good doctor assumed, I had been taking a realistic approach to my future from the moment she gave me the bad news. Not only had I read every book and pamphlet, visited every blog, and watched every movie or documentary ever made, I also volunteered at a long-term care center for a while, just to be sure I was making the right decision.
As a result, I was well aware of the rush to quell all negative emotion and outbursts, all depression and sadness in Alzheimer’s patients, and the success of antidepressants in the treatment of this problem. So successful in fact that a sort of apathy took over, leading to that “oh well, what will be will be” attitude that I’d found so frightening in the people I’d met.
Some of them felt nothing anymore. No tears or anger, certainly, but also no laughter and no joy. No extremes of any kind. Just a constant, frustrating calm, which must have caused even more stress in its own way and kept the cycle of medication going. And now it was my turn.
Dr. Mistry put down her pen and handed me two separate pages from her little pad. “You’re going to be taking medications several times a day, and Mark, Mary Anne, that’s where you come in. I need to know she’s getting what she needs when she needs it.” Then, as if she’d been reading my mind, she said, “You’re both probably still working and undoubtedly have busy lives. No one can reasonably expect you to be with her all the time, so she’ll need to start thinking about hiring someone to come in on a daily basis.” She opened a drawer, took out three pamphlets, and slid one across the desk to each of us. But it was only me she looked at.
“I’m talking about a companion, Ruby, not a nurse. Someone to oversee the medications and help you get through the day. Do a little light housework and cooking as well.” She stood up and came around the desk. Knelt down in front of me. “I know it’s not something you’ve wanted to think about, let alone investigate, but the time has come to call a few of these agencies, get their prices, and discuss services. You’d be surprised how many of my patients develop a real attachment to their companions. It’s a win-win situation for everyone.”
Win-win. That was one way of putting it, I suppose. Although woe-woe felt more apt.
Mary Anne was reading the pamphlet in her slow and careful way, but Mark folded his up and put it into his pocket without looking at it. There would be time later, I supposed. While I was sitting neatly in a chair bothering no one. My difficult nature safely stored in a bottle and put away on a shelf so those around me could get on with their day. A little light housekeeping. A little cooking.
My mouth went dry and I drew in a deep breath. I opened my purse, put the pamphlet and the prescriptions inside. Snapped it shut.
“Make sure you fill those prescriptions today.” The doctor rose, and repeated it to Mark and Mary Anne. “Make sure she fills them today.”
They both nodded, but said nothing. They were probably as overwhelmed as I was. And no wonder. You took someone to a simple appointment and wound up tethered to a nut bar for God only knew how long.
Dr. Mistry went to the door, opened it, and waited for us to approach. “One of the agencies I’ve been talking about holds a meeting downstairs every couple of months as a service to Alzheimer’s patients and their caregivers. There’s one starting in a few minutes and I think you’d all benefit from it.” She followed us out into the hall and down to the receptionist’s desk, where she picked up a card and handed it to Mark. “Take the elevator down to the basement and look for room B114.” She checked her watch. “They’ll just be assembling now, so hurry.”
The three of us hurried as instructed, arriving at the same time as most of the other participants. Men and women from fifty to ninety, all shapes, sizes, and colors. Husbands and wives, parents and children, friends and friends—patients and caregivers two by two. We were the only group of three and I suppose I should have felt special, but to be honest I just felt empty.
We joined the line, smiling and nodding to the people around us. Sometimes it was easy to tell who was patient and who was caregiver, but in most cases it was more difficult. Like the three of us I hoped, standing straighter, smiling brighter, wondering if anyone could tell just by looking that I was the one who danced with Big Al.
We shuffled forward, finally reaching a table just inside the door where a perky young woman greeted us with a cheery, “Hello and welcome. Have you been with us before?”
We shook our heads and she smiled more. “Well, you couldn’t have picked a better day. Dr. Gregory Bonnett is here to talk about the Stepping-Stones to Happiness.”
I was thinking that red wine should be one of the steps when she pointed to a clipboard. “Sign in there please and I’ll give you these stick-on name tags. First names are all we need.” She laughed and pushed a handful of Sharpie markers toward us. “Can’t expect everyone to remember everyone else right away, can we?”
We nodded, smiled back, and wrote our names on the tags. Stuck them to our shirts and moved on to the clipboard. Six columns: Date, Name, Caregiver or Patient, Phone Number, E-mail, Address . “You don’t have to leave your personal information,” Perky said. “But if you’d like to be contacted about upcoming events, we’ll put you on our mailing list.”
While Mary Anne and I had never been fans of group encounters—except those that happened naturally in my shop on a regular basis—Mark had always been a true believer in organized support groups, regularly referring his legal aid clients to everything from anger management workshops to sex addiction networks. I always suspected the sex one was more social than self-help, but I knew that AA had been a big help to Mark when he was younger, and his faith in group hugs was real, so I had always kept my opinion to myself.
Given his views, it was only natural that he started to relax as Perky went on to name a few of the workshops they were excited to have on their Upcoming Events list. And he was the first Musketeer to put his name on the clipboard, complete with a phone number and an e-mail address. Mary Anne followed suit, and I went them both one better, providing not only my phone and e-mail but my home address as well. In for a nickel, in for a dime, as Grandma Lucy used to say. Who could tell? Perhaps the good doctor was right. Perhaps this would be good for me. And perhaps with a few antidepressants under my belt, I’d even come to believe it.
Another woman, far less cheerful than Perky, herded us forward. The room was typical of basement meeting spots. White walls, brown stacking chairs lined up in rows in front of a podium, a screen for the presentation, and two doors leading into smaller areas. Along one wall was a table with coffee and cookies, and along another a few tables with flyers, cards, and a display board highlighting those Upcoming Events and a man signing copies of a book—Dr. Gregory Bonnett and the Stepping-Stones to Happiness. Fifteen dollars, tax included.
We wandered past the board and the tables, Mary Anne and Mark picking up a few more flyers, politely sidestepping the line for Dr. Bonnett’s book. I paused beside a stand-up display for something called a Caregivers Expo. A two-day event to be held in some convention center that promised to be “filled to bursting with businesses and nonprofit agencies catering to the needs of caregivers, each offering ideas, products, and services to make the caregiving journey more enjoyable and assist in problem solving.”
A trade show for Alzheimer’s. Who knew?
“Ladies and gentlemen,” Less-Than-Perky called. “Today’s meeting will start with a special presentation of Stepping-Stones to Happiness, “Finding Your Way Forward through Alzheimer’s,” courtesy of our guest, Dr. Gregory Bonnett. After that, we’ll break for coffee and then we’ll move on to the separate caregive
r and patient meetings.” Here she indicated the two doors. Caregivers on the left, patients on the right. I could hardly wait.
Seats were filling up quickly, leaving us to choose between the front row and the three seats left in the back. We went with the back row, nodding and murmuring hellos to the people around us as we settled in and Dr. Bonnet took his place behind the podium.
“Good afternoon, ladies and gentlemen, and let me say how pleased I am to be part of this very special lunchtime presentation.”
He was short and blond with the overeager look of a salesman. Glad that I hadn’t thought to bring cash, I shoved my purse under the seat and leaned back while he continued. “Ladies and gentlemen, I’m going to take you on a journey along the Stepping-Stones to Happiness.” He picked up a clicker and got things rolling with a PowerPoint presentation, complete with music.
The Stepping-Stones were merely a repackaging of the things Grandma Lucy used to say, including Be Positive, Have Respect, and Trust in God. He added a few that were Alzheimer’s specific like Do Puzzles, Keep Active, Find a Buddy, and I knew what Dr. Mistry had been reading lately.
“The challenges of Alzheimer’s affect us all,” he said, and after about fifteen minutes, I started thinking that the coffee smelled good and cookies would be nice and that the man in front of me must be a hundred years old, when finally, the doctor stopped talking and started a movie.
“This is something very personal that I want to share. A video I made about a year ago when my wife was in the late stages of the illness. I think it illustrates the importance of what I’ve been saying. The need to look for joy, a silver lining in every day, even when there seems to be none.”
The lights dimmed and the movie began with a musical introduction and the title, Debbie Is My Darling.
Debbie was tragically young. Early fifties at most. Tall, slim, and blond, she wore black pants and a white shirt that were both fashionable and expensive—befitting a doctor’s wife. The film was set in a large and beautifully appointed living room where Debbie paced back and forth in front of a fireplace.
Her expression was blank, almost childlike. She kept her head down and constantly rubbed the back of one hand with the other as she walked back and forth, back and forth in an area bounded by two wing chairs, a coffee table, and a wide-screen television. It took a moment, but I finally realized she was pacing back and forth because she couldn’t find her way out. Couldn’t figure out how to get around the chairs or bypass the coffee table. So she went back and forth, back and forth. At least she was getting some exercise. Silver linings. Silver linings.
“Debbie, darling,” the voice behind the camera—Dr. Bonnett’s voice—called.
She paid no attention. Just kept on walking despite the fact that he called her name over and over again. “Debbie. Debbie sweetheart. Debbie darling.”
He snapped his fingers, but she still didn’t respond and I expected him to whistle for her at any moment. Come on, Debbie, come here, girl. Instead he moved on, addressing the audience and taking his camera with him to a gallery of portraits hung on the wall above a white leather chesterfield. “We mounted these pictures to help Debbie remember us,” he said, pointing out their daughter and her children. Their son and his partner and finally their own wedding portrait.
Debbie had been truly beautiful. The kind of woman who took your breath away, and there was an audible silence in the room when the camera returned to the present-day Debbie.
Dr. Bonnett went on to explain that even though Alzheimer’s had stolen so much from them, there were still moments of joy, still silver linings to be found each and every day. We just had to look to find them.
To illustrate where he himself liked to look for such moments, he led Debbie and the audience out to the garden where apparently she liked to walk. He showed us the roses she had loved and how he had removed all the thorns so she could touch them and smell them and find joy in these small and simple things. Only Debbie didn’t smell or touch them. She simply stood still, rubbing her hand and staring at the ground, trapped between the camera and a pair of gardening gloves someone had left on the ground. At least she wasn’t likely to wander off. Another silver lining.
Done with the flowers, the doctor took us all back to the living room, sat Debbie darling on a chair and called, “Here, Skipper, here, boy.” A fluffy little dog bounded onto the scene and leapt into Debbie’s lap, making her jump and then almost smile before he leapt away again.
As the dog ran in circles and a day in the life of Debbie trudged on, faces all around me were softening and people were nodding. Mark reached out to take my hand and I was almost ready to be seduced, lulled into looking for silver linings and shining moments, when the doctor said, “This is my favorite part,” and I turned my attention back to the screen.
Debbie was on her feet again, pacing and rubbing, oblivious to his voice telling her to look his way. So he went to the stereo, pushed a button, and that silly song Build Me up Buttercup burst from the speakers. Debbie stopped walking. Looked at the stereo and for one split second her face changed. In that brief moment, you could see the woman she used to be. Confident, strong, and heartbreakingly beautiful. And she started to dance. Moving her head, her arms, her hips. It didn’t last for more than fifteen seconds, and then she was pacing again, the connection lost.
The doctor was obviously pleased with the result. Called it Debbie’s moment of joy, and hit the button one more time. Again, she stopped, faced the music, and danced. It was her party trick, I realized. The one he probably had her do for company. Dance Debbie Dance, and I knew from the portrait on the wall and that fleeting look on her face, that the woman she had been would not have been amused. If that woman knew what he was doing to her, what he was showing the world, she would have smacked the shit out of him. And he’d deserve it.
“What are you doing?” I called out, not because I was out of control, but because for the first time since the outburst, I felt I was in control, fully aware of what was going on and who I was. I was Ruby Donaldson. Alzheimer’s patient. And I would never be anyone’s one-trick pony.
“Do you honestly expect us to believe that Debbie is finding joy in any of this?” I demanded.
“I assure you, madam, my wife loved to dance—”
“I’m sure she did when it was her choice. But this—” I flicked a hand at the screen. “This isn’t choice, this is response to a stimulus. Like Pavlov’s dogs or a rat in a maze. Flick the switch and get a treat. Watch Debbie dance.”
“I beg your pardon,” the doctor said.
“Dr. Bonnett, your film is despicable,” I continued, knowing Less-Than-Perky and a few men of the committee were already on their way. “You’re treating your wife like a dog. Getting her to do tricks for you. Tell me, Doctor, what will you have her do when she can’t do this one anymore? Will she still be your darling, or will she no longer have anything film-worthy to offer? No moment of joy for you to peddle to the world?”
“Madam,” Less-Than-Perky said, and Mark and Mary Anne rose at the same time. Both were probably finding me offensive as hell, but they were ready to defend me against security if necessary. All for one and one for me and all of that.
“If Debbie knew what you were doing,” I continued, “she would hate you, sir, I guarantee it.”
The ladies two rows in front of me nodded, and a man behind me whispered, “She’s right, you know,” and I knew I’d hit a chord.
“Alzheimer’s steals our dignity,” I said to my comrades instead of the doctor. “The least we should expect from our caregivers is a little respect.”
“Absolutely,” a woman to my right said. “I’m as appalled as you are.”
“We demand respect,” the hundred-year-old man yelled. “Do you hear me, son? Respect!”
“Ma’am, please,” a man from the committee said.
“Don’t you ma’am me and don’t you touch me either.” I thrust out my arm, pointing straight at the doctor. “Do you want to know what
the real Stepping-stone to Happiness is for an Alzheimer’s patient? There’s only one and it’s real simple. Take yourself out while you still have some happiness. While you still know who you are and what you want. Before they start toileting you and setting you in the sun like a potted plant.” I lowered my arm, turned to the group. “If we were smart we’d be lobbying for the right to die with dignity. To thumb our noses at the Alzheimer’s industry and say no to mind-numbing drugs and meaningful activities and warehouses that pose as nursing homes, prolonging our lives for their own monetary gain.”
The hundred-year-old man burst into tears. “I’ve been saying the same thing, but no one ever listens. ‘Don’t be silly, Dad.’ ‘Life is precious, Dad.’ ” He whacked his son with his hat. “It’s bullshit, I tell you. Bullshit!”
“Ma’am, we’re going to have to ask you to leave.”
“You don’t have to ask me anything. I’m already on my way.”
I slid back my chair and headed for the door. Stopped at the table long enough to tear the page with my name off the clipboard. “If any of you want to sign their form again, go ahead. As for me, I am out of here.”
I turned and started walking. Stopped again and spun around. “Mark! Mary Anne! Get my purse. I forgot it.”
LIZ
Mark Bernier is a prick.
Sure, he comes off all concerned and caring, nodding and murmuring “I see, I see” while you talk his ear off. Never interrupting even when you’re little and ranting about silly schoolyard shit. Or when you’re older and need someone to let you talk without always offering advice. Leading you to believe that you can count on him to understand, to help you out when it matters most. But watch out, because just when you were feeling confident, just when you least expected it, wham! The real Mark came out and bit you on the ass.
Island Girl Page 21