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December 05, 2022

The Sleepless Dream, Part 2

By Vivian Rinaldo

"This is more than just forgetfulness, Dr. Samuels. It's forgetting what I'm doing in the middle of doing it; it's not being able to retrieve a word I know as well as I know my own name; it's having to write down absolutely everything so that I don't miss appointments, forget to pick Missy up at the Drop-In Center, or take my medicine at night before I go to bed -- the same medicine I've been taking at the same time for six or seven years. I'm scared to death. You know what happened to mom ... and the rest of her family, except for my grandmother."

The doctor pushed his black-rimmed glasses up his forehead and rubbed his chin thoughtfully. "Well, you know, Annie, Alzheimer's is not uncommon in women your age. Or men either, for that matter. Also, with your family history ... "

"I know, I know," Annie interrupted. "Why do you think I'm here? What am I going to do?"

He patted her hand. "That doesn't necessarily mean that you have A.D. It simply means that you may develop it at some time. Before we jump to conclusions as to what is going on with you, why don't we run some tests to be sure it's not something else?"

"Like what?" Annie asked, stubbornly hopeful.

"Well, stress, poor thyroid, bad diet, lack of exercise, anxiety, of course, but also there are also other things that can mimic the symptoms of A.D. Like a stroke. I'm not saying it's not A.D. I'm just saying you shouldn't panic and imagine that you are about to become completely disabled. Let's see what is going on. I want to do a complete physical on you, order some lab work to be sure you don't need to have your blood pressure or thyroid medicine adjusted, get an MRI of your brain, and also I'd like you to talk to a psychologist friend of mine."

Annie jerked her head up. "What on earth for? Do you think I'm imagining all this?"

"Now don't get all huffy with me. I just want to see if she thinks you're clinically depressed. Depression is often the culprit behind lack of focus, forgetfulness, and so on, especially in the aging population. It is the most under-diagnosed illness older people have, in my opinion. I'll forward an order for the blood work-up and stress test to St. Cecilia's, and I'll have my nurse call the hospital and schedule a carotid ultrasound to be sure your arteries are nice and clear." He scribbled on a piece of paper and handed it to Annie. "That's the name and phone number of the psychologist I mentioned. Call her as soon as you can. She's very good, and she does a lot of work with our aging population. Also, even if you don't think you're depressed, your anxiety over the question of A.D. could be causing you to exhibit exactly the symptoms you fear."

"I'm not that old; how could this be happening to me so soon?"

"Not everyone who gets Alzheimer's disease is old. Some develop early-onset A.D. as young as 40. I'm not trying to frighten you or add to your stress, but you also need to know that the incidence of A.D. is much higher in people like Missy who have Down syndrome than in the general population."

A cold ripple of fear ran up Annie's back. She stared at him, speechless, for a long moment, and then asked, "Are you sure?"

He ran his hand across his forehead, smoothing back the few fine brown hairs that still crowned his head. "Of course. They age earlier, and by the time they reach 50, about half of the people with Down syndrome will be showing memory loss and other problems. The life expectancy of people with Down has increased; in the past, A.D. was virtually unknown in that population simply because they didn't live long enough to exhibit symptoms."

"Missy is 33; should I be worrying about this now? What should I be watching for?" Annie wrung her hands.

Casually, he shrugged. "I should never have mentioned it. Leave that alone for now, okay? You have time to consider what to do about Missy later. Right now we just need to deal with your symptoms and see what we need to do for you." He stood and dropped his ink pen into his lab coat pocket.

Panicked, Annie spoke fast, "But what am I going to do if I am getting Alzheimer's? Who's going to take care of Missy? What if she gets it? You know we don't have any family, and ... "

"Whoa! Wait a minute now," he interrupted, hand up, palm out. "Nobody is saying anybody has Alzheimer's yet. We certainly don't know for certain that you are developing symptoms. As for Missy ... well, we've got some pamphlets about A.D. and Down syndrome. Ask my nurse for one as you leave. Read it and let me know if you have any questions."

"I'll tell you the truth, doctor; I'm scared to death. You know my mom and her sisters and her father all got it, and when she died, my mother was in diapers and didn't even know who I was!"

"Look, we don't know anything about either one of you for sure as far as this goes yet. Let's look at your tests first and see if there's anything wrong or anything we need to do to help you before we get all excited and assume that you are developing symptoms of A.D."

Straightening her shoulders, Annie slid off the examining table. "Of course. I'm just feeling a little overwhelmed. Next month is the anniversary of my mother's death, and I always freak out a little when that comes around. And it worries me that Missy isn't more active. She doesn't want to do anything but sit in her room and work word search puzzles. She never wants to leave the house or do Special Olympics anymore or anything."

The doctor checked his watch. "Uh huh," he said, distracted. "If she can do those puzzles, I'd be very reluctant to diagnosis A.D. in her. I can't do them, and as far as I know, I have NO symptoms of dementia at all!" He patted Annie's shoulder. "Now go on home and relax. I'll have my nurse call you about the tests. For the time being, assume you are fine." He patted her shoulder again, then turned and left the room.

For a moment, Annie sat still, trying to pull her fear and concern back from the edge of hysteria. When she felt she was sufficiently under control, she picked up her purse and walked out to the nurse's desk. The slim young woman looked up and smiled. "How's Missy, Mrs. Filkin? We haven't seen her for a while."

"Fine," Annie mumbled. "The doctor said something about a pamphlet about Alzheimer's and Down's?"

"Of course ... " The nurse reached behind her and pulled a brochure from a cubbyhole in her desk. "Here you go."

Annie went through the lobby door and stopped at the front desk. The pretty young blonde receptionist looked up. "What do I owe you?" Annie asked, scrabbling in her purse.

"Just your $25 co-pay today."

Annie moved the contents of her purse back and forth, searching ... searching ... the brochure, with its big black letters lay in front of her; she tried not to look at it, but ... she suddenly realized she couldn't remember what it was she had been searching for. She looked up at the receptionist. "I'm sorry, what did you say?"

The woman smiled more brightly. "Co-pay. Twenty-five dollar co-pay?"

"Oh, yes, I'm sorry," Annie replied, feeling a hot flush of humiliation creep up her neck. She pulled out her wallet, opened it -- there was no cash in it, only a couple of receipts and her identification.

Now the woman was not smiling. "You usually write a check?"

"Yes, of course," Annie said, putting her wallet back in her purse. "I'm so sorry. It's just been one of those days, you know?" Her hand touched her black checkbook case, and she grasped it and pulled it from her purse. Setting her purse down, she opened the checkbook and wrote out a check for twenty-five dollars, signed it and handed it to the receptionist. "Thanks for putting up with me."

"Not a problem. Wait a sec, and I'll get you your receipt." The woman stamped the back of the check "For Deposit Only", keyed the payment information into her computer, and printed out a receipt she handed to Annie.

Embarrassed, Annie tucked the receipt into her purse and zipped it shut. "Thanks." She started toward the office door, but the woman called after her.

"Ms. Filkins! You forgot the pamphlet!"

Annie turned slowly and walked back, shoulders slumped. Picking up the brochure, she stuffed it hurriedly into her purse, turned and nearly ran toward the exit.

"Have a good one!" the woman chirped cheerily, but Annie was already halfway through the outer office door.

* * * * *

"Mom?"

Annie turned to see Missy standing at the door to the kitchen, watching her. She quickly wiped her eyes and shook her head. "What, Missy?"

Missy walked slowly over and touched Annie's cheek with a finger. "Crying?"

"No, of course not." Annie stood up and walked to the sink, rinsing her cup and placing it in the drain rack. "Whatcha need?"

"It's broke." She handed a slim black remote control to Annie. "Can't turn it."

"Well, the batteries are probably dead. Let me see if we have any." Annie crouched down in front of the cabinets under the sink and opened one door. Sliding out the wicker basket that held odds and ends, she scrabbled through it. Rubber bands, twist-ties, pens, matches, cork coasters, scotch tape rolls, several soft cases for glasses, a clear plastic box of finishing nails, but no batteries. "Damn!" Annie grunted as she pushed the basket back in and stood up, handing the remote back to Missy. "No batteries, sweetie. Guess you'll just have to change the channels the old-fashioned way."

Missy thrust the remote at her mother. "Batteries, please."

Annie surrendered. "Okay. I'll get them next time we go to the store. But for now, you can do this with the buttons."

Missy folded her arms across her chest and pouted.

Annie felt a sudden urge to slap her daughter, an urge so powerful, she turned immediately and walked out of the kitchen. As she stood in front of the living room bay window, she heard Missy's door close, and she trembled with the unexpected anger that had washed over her.

* * * * *

Annie sat down at her PC, took a pen out of her desk, and began her search, jotting down information as she went along. She spent some time searching under 'Alzheimer's Disease' and under 'Down syndrome'. Using both phrases, she began to find more information; however, much of the medical reporting in journals that she saw, she could not interpret. She linked to the National Down_Syndrome Association and saw several articles that had information related to A.D. and Down syndrome.

After a while, she realized that several phrases repeated over and over. "Occurs in 50 percent of adults over 50, near 100 percent by age 60 ... accelerated aging ... rapid decline ... problems in forming new long-term memories ... difficulty communicating, walking, grooming, sleep disturbances, wandering behavior ... higher rates of seizures ... loss of life skills". When her eyes began to hurt from the strain of reading, Annie sat back and rubbed them. To her surprise, she found tears on her cheeks. Her volatile emotions once again had expressed themselves outside her awareness.

* * * * *

Supper is over; pizza again. Annie doesn't have the energy to cook anything; she pours every drop of her strength into worrying about Missy's future. She stands in front of her chest of drawers, the top drawer open a few inches. Inside, neatly lined up, rest amber plastic bottles containing all the medicines she takes at night: two for high blood pressure, three for anxiety, depression, and sleeplessness, one for high cholesterol, and baby aspirin for her heart. She hesitates for a moment, trying very hard to imagine other options -- she has no other family, there is no one who could care for Missy if something happens to her, she knows what the state will do -- shrugging, she opens three of the plastic bottles and pours out the tablets on top of the chest next to a small picture of Missy smiling on a beach with a huge seashell in her hand. She counts pills, recounts them, and begins breaking them in half.

* * * * *

"How about movie night this weekend? We'll rent some movies Friday night, fix chili, and pig out!"

Missy nodded and smiled around a mouthful of Hamburger Helper. Swallowing, she said, "Excellent!"

"Cool," Annie responded. "Anything in particular you'd like to see?"

Chewing, Missy pondered the question. "Scooby-Doo?"

"Again? Good grief, you've seen that movie twelve times!" Annie laughed.

"Yeah!" Missy put her spoon down and clapped. "Rooby-rooby-roo!" She laughed heartily.

"Scooby-Doo it is, then," Annie agreed. "I guess if you can watch it again, so can I."

* * * * *

The pre-heat light on the oven went out, and Annie slid the muffin tin in and closed the door. Checking the timer, she cleared away the mixing bowl, spoons, measuring cups, and ingredients. The crockpot burbled gently on the counter, and the breadmaker kicked into knead mode. Annie looked around the kitchen, then out the window. Dark clouds gathered to the west, and there was a very faint rumble of thunder from that direction. "Not now," she whispered. She leaned back against the counter and removed the letter from her jeans pocket. The printing at the top of the first page was boldly outlined in red. She laughed. "Of course. What else?" She didn't bother to read the opening paragraph; she knew it by heart now. Putting that page behind the others, she scanned down over her test results. The details weren't important; she didn't understand the technical language of laboratories. Only the brief conclusion at the end mattered. The words blurred as she read them again. " ... assumed early onset of Alzheimer's disease ... medication recommended to reduce symptoms and prolong functioning?"

She reached for the manila folder on the kitchen table. She pulled out each page, read it carefully, and turned it face down on the open folder. When she'd finished, she turned them all over again and closed the folder. Annie reached into her pocket and pulled out a Sharpie. She uncapped it, and in careful print, wrote "In Case Of Emergency" on the front. Underneath that, she wrote a name, address, and telephone number. "I guess he'll do at least this much for me," she murmured to herself, capping the pen.

Annie tried to remember the last time she'd spoken with her brother, Jackson, but the memory wouldn't come. They hadn't been close for many years -- a consequence of his careless neglect during their mother's lengthy illness. He responded to her diagnosis of Alzheimer's disease by refusing to watch her decline. When he showed up at the funeral home the day of the service, Annie almost didn't recognize him. He'd lost weight, grown greyer, and had a hollow, haunted look behind his pale green eyes. A persistent smoker's cough wracked his body as he sat dry-eyed through the eulogy. Annie had insisted on a closed casket; a spray of lavender orchids draped the top. Annie couldn't bear the thought of seeing her mother's thin, pale face again, remembering the horror of the days leading up to her death.

* * * * *

"Ms. Alexander?" the soft voice on the phone asked.

"Yes?" Annie didn't recognize the woman's voice, but a cold feeling of dread lay over her. She glanced at the clock above the stove ? 10:30 p.m. The bad news always comes at night, she thought.

"This is Sara at the nursing home?"

Annie dropped into a chair and fisted her left hand in her lap. "Yes?"

"Ma'am, Dr. Macoy asked me to get in touch with you. Your mother is failing, and she asked me to tell you that you should come down here right away." The pity in her voice was not false, and Annie couldn't bear it.

For just a moment, all she could feel was anger. "Again?!?" she barked, feeling the familiar tears rise. "This is the third time this week you people have ... "

"Ma'am; I'm sorry, but Dr. Macoy asked me to tell you that your mother is failing. The chaplain is in with her now ... "

Bitterness and fear warred in Annie's heart. Silently, she put the phone down and headed for her bedroom to dress. Once she had her coat on and her keys in her hand, she tiptoed into Missy's room and kissed her lightly on the forehead. "I have to go to the nursing home; I'll be back as soon as I can. Call the cell phone if you need me."

Eyes closed, Missy nodded sleepily.

It was cold outside, the sky dark and threatening. Annie hoped it held up. She didn't like driving in snow, and the tires on her car didn't have a lot of tread left on them. The motor turned over, and Annie pulled out onto the street, heading for her mother's bedside.

Pulling into the parking lot at Mercy Services, Annie found a spot as near the door as possible, and tapped the brakes lightly. It had begun snowing just as she'd gotten to the main road into town, and she winced as she pulled her cramped hands off the steering wheel. She shut off the motor, pulled the keys out of the ignition, and stepped out of the car, stuffing her hands deep into her coat pockets. In spite of the cold, she could feel sweat breaking out on her upper lip as she neared the side door of the nursing home.

Punching in the security code that prevented patients with dementia from wandering, Annie pulled open the door and held her breath against the smell of urine and industrial strength cleaner. As usual, she breathed through her mouth as she headed to the nurse's station on A Wing. The night nurse, Bill, wrote something in a chart, but he looked up as he heard her footsteps approaching. "Annie, I'm so sorry." He stood, came around the desk, and hugged her.

She stiffened against the tears that threatened, but patted him on the back and murmured, "Thanks."

He straightened, eyes shining with sadness and pity, and led the way down the hall to the door of her mother's room. Before he opened it, he said, "We moved Mrs. Wilson out for the time being. I knew you'd want to spend some time with your mom without anyone ... " He pulled open the door and started to enter the room, but she caught his arm.

"Please. I need to see her alone for a moment."

Bill turned. "I need to check her vitals." He patted Annie's shoulder. "You can stay as long as you want. I won't be a moment. The doctor says it won't be long now."

"When was she here?" Annie couldn't bring herself to enter the room. She could hear her mother's gasping, labored breathing, and the smell of sickness hung over the small bed near the window.

"Dr. Macoy checks in pretty often. She's very good about keeping up with the patients that are dy -- that are gravely ill." Bill walked on into the room, reached out, and took Annie's mother's hand in his. Fingers gently pressing her wrist, he studied his watch and counted the beats of her mother's failing heart.

Annie watched from the open doorway, postponing the inevitable sight of her mother's colorless, thin face. Everything in the room had lost its color -- the walls, the bedclothes, the curtains, and her mother. Shivering, Annie thought, It's as if it's been snowing in here, too.

Leaning down, Bill pressed a stethoscope against her mother's chest and listened, eyes closed. He moved it slightly to one side, then the other, then pulled it away and hung it around his neck. Tenderly, he pulled the comforter up over her mother's arms and tucked it under her chin. Turning to Annie, he nodded and walked back past her. Before he closed the door, he said, "Let me know if there's anything that I can do." He stepped into the hall and pulled the door shut.

Annie approached the bed, pulled a chair near her mother's shrunken form, and sat down, taking her mother's hand in her own. "Oh, Mom, I'm so sorry." Tears began to flow down her cheeks, and she leaned forward, resting her forehead on the bed beside her mother. "For ... for ... just for everything." She didn't know if she was crying for her mother, or for herself. It occurred suddenly to her that once her mother passed, she'd be an orphan. She barely remembered her father's passing from emphysema so many years before; that death caused her pain, but this death would be a heartbreak from which she doubted she could recover.

She waited ...

At the funeral home, she greeted guests with a cool poise; her calm demeanor later became the subject of much discussion. She knew the grieving would come later, in private. Several of the staff from Mercy Services attended briefly; they presented her with a gift in memory of her mother -- a box containing brass and walnut wind chimes. She thanked them graciously, handed the box to a friend, and walked away, swallowing hard against the loss of her composure.

Later, at home, she opened the box, assembled the chimes, and hung them from a nail on the eave over her deck. Immediately, the chimes rang, the baritone sounds playing accompaniment to her sobbing.

* * * * *

Letter written, she stuff the pages into the manila envelope and printed her brother's name on it. She tried to envision the most conspicuous place to leave it, and finally decided on the small table by the front door where she usually left her keys, mail, umbrella, and other things she'd need to find before leaving the house.

She piled the broken halves of the pills on a double-folded paper towel and wrapped it around them tightly. Reaching into a drawer, she pulled out a heavy wooden rolling pin, one she'd claimed from her grandmother's trailer after her sudden death. Pulling on her oven mitts to protect her from the cold, she began rolling it back and forth across the lump of pills, crushing them completely into powder. She knew her grandmother would be furious that the tool was being used for something other than making food for family and friends. Annie brushed that thought away. Sure she had pulverized all the pills, she put aside the rolling pin, opened the paper towel, and looked for a long minute at the powder.

As she wiped off the countertop, Annie gazed out the kitchen window at the daffodils nodding their yellow heads in the spring breeze. The wind chimes rang softly, and the timer on the crockpot buzzed.

Article © Vivian Rinaldo. All rights reserved.
Published on 2007-11-12
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