A nursing facility is everyone’s solution for what to do about Sara, but her husband, Jack, can’t bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease. He and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings. However, after nine years of selfless caregiving, complicated by her progressing Alzheimer’s and his own failing heart, he finally admits he can no longer care for her at home. With reluctance, he arranges to admit her to an assisted living facility. But, on the day of admission, Sara is having one of her few good days, and he is unable to follow through. Instead, he takes them on an impulsive journey to confront their past and reclaim their future. In the end, he realizes that staying together at any cost is what truly matters.
Excerpt:
Chapter OneJack closed his eyes in frustration and counted to ten.
Sara had emerged from the bedroom in an outfit made for raking autumn leaves. A knitted cap that had seen better days sat lopsided over her uncombed hair. She wore one of his old sweaters, frayed at the wrists and coming apart under one arm. She clomped through the house in a heavy pair of work boots. Where did she find these ridiculous garments? He thought he’d sent that sweater to the Goodwill long ago.
He glanced at the clock and sighed with exasperation. They had errands to run: the pharmacy, the post office, the market. “Come on, Sara. I can’t take you out dressed like that,” he said.
“What’s wrong with it? This sweater will keep me warm, and these boots are good for walking.”
“It’s summer, that’s what’s wrong with it. Today’s a scorcher. It’s eighty degrees and only half-past nine. Put on a pair of shorts and a blouse and let’s go.” He reached for her cap. “And get rid of this.”
She blocked his arm, grabbed the other, and gave him a nasty pinch. “I can’t go anywhere without my cap,” she cried, darting away.
Jack yelped in pain. Clutching his aching forearm, he chased after her through the dining room, the kitchen, the living room, and back again, before facing off at the single step leading into the family room. Again, he reached for the cap. She lunged forward to deliver another pinch and they lost their balance, falling over the step. Sara landed on her right hip with a terrific bang. Jack landed on top of her.
That’s it, he thought, afraid she’d broken a leg, hip, or worse. He pulled himself upright, groaning as his stiff joints protested. He tried to stand her, a tiny, wiry woman, but she felt like dead weight and resisted his efforts, howling like a wounded dog. He bent over her, and with his strong but gentle hands grasped her right leg and cautiously checked its range of motion.
She clawed at him and screamed, “Let go of me, you old fool, I’ve hurt my leg.”
He removed his hands and tried to stand up but she pulled him back down on to the floor.
“I’ve hurt my leg,” she cried. “I can’t get up.”
“I know,” he grunted, breathless from his exertions. “I’m trying to help you.”
She wouldn’t let him go, but he needed to call for help. He struggled to pull himself free and wrenched his own back, sending a violent spasm up from his lower spine to between his shoulders.
“Good God,” he cried, and she released him.
He staggered to the phone and called the paramedics. Then he dropped down on the floor beside her and spoke to her with soothing words.
“It’s all right,” he said. “Everything’s going to be all right.” He stroked her face, her hair, and repeated this mantra until she settled down. When she had quieted, he reached into his pocket, pulled out a tiny vial of medicine, and placed a little pill under his tongue to quell the ache in his chest.
Jack felt wiped out, unable to go on. Their day-to-day battle with Sara’s dementia exhausted him. It was a relentless battle of small hopeful gains alternating with frequent devastating losses. Just that morning, she’d awakened at three and slipped out of bed without making a sound. The clatter of pots and pans in the dead of night dragged him out of a deep sleep, and he stumbled into the kitchen to find her hard at work brewing pots of coffee and baking blueberry muffins.
Years ago, it would not have been unusual. They had operated their home, Blue Hydrangeas, as a bed and breakfast for almost a decade, but Sara had forgotten they’d closed for business a few summers back.
Jack played along with her frequent lapses in memory to maintain peace in their home. It was demanding, discouraging work, and at the end of some days he felt ready to give up. But, when morning came things always seemed better and he gave each new day another go. The days rolled into weeks, months, and then years, and here they were, together at home, just the two of them with Sara’s Alzheimer’s.
He knew it was important to keep her in the present, but in the middle of the night he didn’t have the energy. She ignored his desperate pleas to go back to bed, insisting she had work to do. Wary of starting an argument, he poured himself a cup of strong coffee and waited for the muffins to bake. When no guests came down for breakfast, her disappointment broke his heart.
When the ambulance arrived, he anxiously watched as the paramedics attended to Sara. She shouted at them as they examined her, slapped at their hands, and threatened to call the police. They handled her with grace, administered a mild sedative, and bundled her onto a stretcher and into the ambulance.
Jack insisted he was fine and refused their attention. He did not want to waste time getting Sara to the hospital and demanded they leave immediately. He’d wait for the doctors in the Emergency Room to check him out. He climbed into the ambulance behind her and it raced them to the hospital, lights flashing and siren blaring. Sara fell asleep on the way.
A few hours later, the doctor released Jack from the ER. X-rays of his back had turned out fine. An electrocardiogram revealed no new changes. His blood pressure was way up, but after a dose of intravenous medication it returned to a safe level. The ER doctor told him to follow-up with his primary care physician in the morning, prescribed muscle relaxants for his back pain, and advised him to take it easy.
Sara was not so lucky. Her right hip and leg were intact, but she had suffered severe bruising and the leg was swollen and tender. It was difficult for her to bear weight. The doctor also discovered she had a serious urinary tract infection and was dehydrated. He admitted her to the hospital for a few days of intravenous antibiotics and fluids. In the morning, she’d start physical therapy.
Jack went along with the nurses and orderlies to help settle Sara in her room. When they left, he moved a chair over to the side of the bed, and waited while she pulled up the covers and shifted around trying to get comfortable. After she stopped fidgeting, he held a cup of cranberry juice to her parched lips and offered her the straw.
“What are we doing now?” she asked, her voice cranky with exhaustion.
“We’re going to have lunch,” he said. It was well after noon.
“Here?” she asked, before taking a long sip of juice.
“Yes.”
“What is this place?”
“It’s the hospital, Sara. We’ve been here before.” Her long snowy hair matched the pure white of the linens. He finger-combed the tangled mess, trying to make her look more like herself. At home, he brushed it every night, one hundred strokes, until it shone like silk.
She nodded and sucked down the last of the juice. Jack placed the empty cup on the table.
“Are we staying here all day?”
“You’re staying here. I’m going home.”
“I don’t want to stay here. I want to go home with you.”
Jack squeezed her hand. “Maybe tomorrow.”
“Why do I have to stay?” Her eyes turned dark, the way they did when she was gearing up for a fight.
“Because Dr. Fallon wants you to stay,” he said in his don’t-argue-with-me tone. “You need medicine, Sara.”
“I have medicine at home.”
“Not this kind of medicine.” He pointed to the intravenous tubing and bags of fluids and antibiotics hanging on the tall metal pole next to her bed.
“I don’t see what all the fuss is about,” she said, plucking at the sheets. “I feel fine.”
A cheerful nursing assistant entered the room, providing a welcome distraction. “Hello, Mrs. Harmon,” she said. “Back with us again?” Jack recognized Verlaine, his favorite nursing assistant on the hospital’s staff. She carried a food tray and placed it on the overbed table within Sara’s reach.
“What have we here?” Verlaine asked, opening the containers of food. “Chicken, white rice, and steamed carrots.” She cut the chicken and vegetables into bite-sized pieces. “And you’ve got milk and a bowl of chocolate pudding.” She spread a napkin over Sara’s chest and boosted the head of the bed up so she could reach her food. “Anything else I can get you?” she asked with a beautiful smile.
“No, thanks,” Jack said. Sara had started eating, seeming to have forgotten he and Verlaine were still in the room.
“Take care, Mr. Harmon,” Verlaine called as she left them alone.
Jack watched Sara eat. Dr. Fallon had made it clear that a proper diet was important to maintain Sara’s stability, and Jack took meal times seriously. She had a good appetite, although sometimes he had to prod her into eating anything at all. She often left meals unfinished and sometimes hid unwanted food behind the couch or at the back of a kitchen cabinet where it turned bad before Jack found it. However, for this meal Sara was settled in and eating happily. His own stomach rumbled, reminding him he had not eaten since the blueberry muffins earlier that morning. He’d also missed his noon medications.
“Honey, I’m going down to the cafeteria to get some lunch.”
Sara was concentrating on her pudding and did not look up.
At the elevator, her case manager, Allison, approached him. Her job was to assist patients and their families with arranging the aftercare that followed a hospitalization.
“Mr. Harmon, I’m glad I ran into you,” she said, all business. “We need to talk.” She was a strapping woman, mid-forties, with a kind face and a no-nonsense attitude.
“It’s a beautiful day, Allison. You should sneak out and take a walk,” Jack said, sidestepping her. “I won’t tell,” he winked. The elevator doors opened and he moved forward.
Allison refused to let him get away. She took him by the arm and led him into her office. “Has anything changed at home since your wife’s hospital visit last month?” she asked.
“Oh, no,” he explained, smiling. “My grandson Derek is still staying with us.”
Allison said, “Your grandson works full-time.”
“Well, yes, of course,” Jack said, “but he helps out when he’s home. I also have Mrs. Wright, my housekeeper, coming in every morning, and Margie, Sara’s companion, is available whenever I need her. Then there’s our good friend, Rose Fantagucci, just down the road, and you know my son and his wife are a short ride away up in Boston. I’ve got it all covered.”
The case manager frowned. “That’s not enough, Mr. Harmon. Your wife needs dependable twenty-four hour care.”
“But I’m there twenty-four hours. I never leave her alone.”
Allison sighed. “Full-time caregiving is a tough job. We’ve talked about this before. It’s time, Mr. Harmon. This is too much for you. Sara should be in a place where her needs are met twenty-four seven. One person can’t possibly fulfill that responsibility.” During Sara’s many hospitalizations the case managers and nurses had questioned Jack’s ability to care for his wife. Today it was Allison’s turn to convince him that an alternative living arrangement was in Sara’s best interest.
“You mean a nursing home,” Jack said, gagging on the words. The thought sickened him. So many of those afflicted with Alzheimer’s finished their days in nursing homes, and he was determined to keep Sara with him for as long as possible. Forever. He’d never consent to an arrangement that would take her from Blue Hydrangeas.
“Not a nursing home, Mr. Harmon,” Allison explained, “but an assisted living facility, where Sara will receive around-the-clock supervision by people trained to meet her special needs. Think of it as a bridge between living at home and living in a nursing home.”
“You’re not fooling me,” he said. “It’s the same thing. Either way, we’ll be separated, and I promised Sara we’d stay together in our home no matter what.”
“You might consider assisted living for yourself as well, Mr. Harmon, given your heart condition – -”
Jack wouldn’t let her finish. “This is nuts,” he said. “I’m perfectly capable of caring for Sara on my own. I love my wife. Don’t worry about us, Allison. We’ll be all right.” He patted the case manager’s arm.
“Mr. Harmon, this isn’t about love,” she said. “It’s about your wife’s care and safety. Love is not enough.”
“You’re very kind, Allison, and I appreciate your concern, but I’ll let you know when I’ve had enough. Right now, I need to get some lunch.” He walked out of her office.
After dining on the cafeteria’s daily special he returned to his wife. She was sleeping peacefully, her face devoid of any stress. Jack stared at her for a long while, seeing vestiges of a young Sara, remembering the first time he had seen her fifty-seven years ago. Sara was nineteen, a blue-eyed beauty with rich auburn hair and tiny freckles splashed across her tiny nose. The face he saw now was older and well seasoned, but at seventy-six she was still a beauty.
The auburn hair had turned snow white and covered her shoulders like a silken shawl. Her blue eyes still sparkled like jewels, but now tiny lines framed them. He smiled, thinking of how she lamented those wrinkles, blaming herself, a redhead living her life in the sun. She had taken care, but her love for the outdoors, the ocean, and her gardens had gotten the better of her. Jack thought the wrinkles added character, a testament to a life well lived.
Her hands, though, revealed the most about her. Once as soft as rose petals, they had become calloused and worn by her life’s work. As a commercial artist, she had dipped them into oil paint and turpentine for decades. And, when her hands were not commanding a paintbrush they had dug deep into the earth, creating a spectacular garden that reaped awards from gardening groups throughout New England.
Jack loved those hands, and held both of them in his own. Over the years, he had lavished her with exquisite jewelry, but these days she wore one simple gold band on her wedding finger, delicately inscribed with the words: “Always, my love. Jack.” He stroked the ring, gazing at her with a mixture of love and grief. The last nine years had been tough and promised to get tougher. He sensed change, and loss, and death ahead and it filled him with fear deeper than he had ever known. The realization that one of them would die, would leave the other, paralyzed him. How could he live without her? What would she do without him?
“Oh, Sara,” he whispered, a catch in his throat. Tears formed in his eyes and he brushed them away. He did not know whom he pitied more: Sara or himself.
He pulled away from her bedside and went home to call their son.
This book is available at http://www.amazon.com/author/mariannesciucco
Looks like a very poignant read. Thanks for sharing.
This sounds like a very touching story.
This sounds like a good one. Thanks for the giveaway!
Would love to read to my nursing assistant students.