Caretaker, p.13
Caretaker, page 13
“Your mom was just exhausted, that’s all. These past couple of weeks have been hard on her.”
Ariel shrugged. “Okay.”
Zach slid into his seat at the table. “I’m starving. Let’s eat!”
Ariel sat down and Ian noticed Lloyd had only set three places.
“Aren’t you going to join us?” Ian asked.
“Yeah, please do,” added Zach. “Please!”
“Thanks, but I should be heading home. You all enjoy your meal.” He had started to head toward the door when Ariel chimed in.
“Please, we insist.”
Lloyd stopped and turned around, offering a thankful smile. “Well, in that case. I suppose I can stay for a little while.”
Ian had just cut into his stack of fluffy pancakes drenched in local maple syrup when the phone rang. He excused himself from the table to answer the call.
“This is Ian.”
“Ian, it’s Dr. Rapha.”
This was the call he had been waiting for. Anxiety and anticipation swelled.
“I’d rather talk about this in person, Ian. It’s complicated. Could you come to the office tomorrow?”
The two set an appointment for nine o’clock the next morning. Ian knew it couldn’t be good.
Twenty-Nine
The next morning as Ian made the drive from Farr Hill to Dr. Rapha’s office, his thoughts were all over the map. He teetered from hope to tears, swinging the pendulum between the worst-case scenario and the best possible outcome. He had heard it before, it’s always bad news when the Doctor needs to see you in person, and knew he needed to use the time during the drive to prepare himself for whatever was coming.
The sinking feeling in the pit of his stomach told him everything he needed to know, but he couldn’t let his mind stay in that dark place. Lyana was everything to him and the thought of something being seriously wrong was simply too much to comprehend. And the thought of losing her? He thought about all their years together and the life they had worked hard to build. All the obstacles they’d overcome. He didn’t know life without her.
This was supposed to be our fresh start.
The words rolled off his tongue as he pulled into the parking garage. He turned off the car and sat for a minute, collecting himself. He wiped a stray tear from his cheek and took a deep breath before getting out of the car. The walk from his car to Dr. Rapha’s office felt like an eternity. With each step, another stray thought. It took everything within him to keep moving toward that office door. Part of him wanted to run in the other direction and pretend everything was just fine. But he needed to know. He needed to face this.
He couldn’t help but think of Lyana on their wedding day, walking toward him in that simple, understated white dress, vowing to spend forever together. She was stunning, her hair pulled back slightly off her face. He felt like the luckiest man alive. She had been his best friend since they were kids and he always assumed they would grow old together.
He took a deep breath, then opened the door.
“Take a seat, the doctor will be right with you.” The nurse behind the check-in desk directed him to one of the chairs in the empty waiting area.
The wait was excruciating. Ian fidgeted, clasping his hands together and rubbing his knuckles. His leg was shaking ever so slightly, and he kept switching positions every few minutes for comfort. He was a wreck.
“Ian,” Dr. Rapha reached out with a handshake.
Ian followed him to his office, then the door closed behind them. Dr. Rapha motioned to one of the two chairs that sat in front of his desk before sitting down in his own dark leather office chair. The room was full of pictures of his family, and several framed degrees hung on the wall. Two dark cherry wood bookshelves were lined with medical books. Ian kept looking around, avoiding eye contact.
“There is no easy way to say this.”
Ian’s eyes met the doctor’s.
“We wanted to be sure.” Dr. Rapha was calm in his delivery. “It’s Lewy Body Dementia.”
Ian heard the words, but it took him a minute to process them. He had prepared himself for the worst possible news, but he had assumed it was cancer or something along those lines.
“Dementia? But, how? Lyana is young. Dementia is something old people get, right? There has to be a mistake.” It was incomprehensible.
Dr. Rapha was empathetic as he explained that this type of dementia was extremely progressive, more so than Alzheimer’s, and that it sometimes afflicted younger adults. Ian didn’t want to believe this was happening, but as the doctor described the early stages and its progression—the hallucinations, the confusion, the memory loss, the blurred line between what was real and what wasn’t—it all started to make some sense.
“There is more.”
How could there be more? Ian was taking it all in, but it was so much to try to process. He listened intently as the doctor continued. Because of Lyana’s age, Dr. Rapha wanted to speak to Ian first before bringing her in to discuss the condition, but he also knew they had a limited amount of time because of the rapid progression of the disease.
“I have never seen it happen this fast or with someone so young,” he added.
Ian couldn’t help but think of what this would do to Lyana. Losing her memories, slowly becoming unrecognizable. He knew enough about dementia to understand how she would change mentally, but he struggled to digest Dr. Rapha’s explanation that she would lose motor skills and physical abilities as well, leaving her a prisoner in her own body. He called the condition Locked-in Syndrome. She would have awareness of her surroundings and lucid moments, but no ability to move or speak.
“Cherish the moments you have now.”
His sentiments angered Ian, but the anger quickly turned to sadness, and he broke down. Sitting hunched over, his face buried in his hands, he couldn’t believe what he was hearing. Their forever now had an expiration date.
“How are we going to tell her? How am I going to explain this to the kids?” His thoughts started racing again.
Dr. Rapha assured him they would get through it together. The two of them made a plan. Ian and Lyana would come back later that day. Dr. Rapha would arrange to have a support counselor present should they want to talk about how to discuss the diagnosis with the kids. They would explain to Lyana the progression of the disease and what to expect in the coming weeks and months.
“I’m truly sorry, Ian. I really am.”
The doctor escorted him all the way to the elevator, offering a supportive pat on the shoulder.
Ian walked back to the car in a fog.
The drive from Dr. Rapha’s office back to Farr Hill felt like it took forever, and yet not long enough. He dreaded the next few hours. And he couldn’t help but think how all of this was soon to be a distant memory for his wife. What would she remember? Would she forget him? Would she forget their children? How long would they have with her until her mind erased everything?
As he pulled into the driveway, Coldplay’s “Fix You” came on the radio. He listened as he inched closer to the house.
{listen}
And the tears come streaming down your face
When you lose something you can’t replace
Lights will guide you home
And ignite your bones
And I will try to fix you
The words pierced him, the truth sitting on his chest like a dead weight. The garage door began to open. Just beyond that door was his family who had no idea what they were about to face.
The song trailed to a finish, and he turned the ignition off. He had to hold it together and couldn’t let on that he knew anything until the doctor had a chance to talk to Lyana and the two of them could figure out how to tell the kids. He wanted to shut himself away and be swallowed whole by his emotions, but his family was going to need him. He needed to be strong.
“Hey, Dad. Take a look at this.” Zach and Ariel were sitting together in the kitchen, working on a puzzle she had received the Christmas before. Ian couldn’t remember the last time he saw the two of them working on a puzzle together.
They were about a third of the way toward completing the 1,000-piece flowing rainbow puzzle. The island countertop was dusted with crumbs from the donuts the two had eaten for breakfast.
“How’d it go in town?” Ariel barely looked up when she spoke. Zach was completely immersed in the puzzle and didn’t even acknowledge Ian’s arrival.
He had told them he needed to see Dr. Rapha for some follow-up treatment information for Zach and that it would be a quick trip. They would know the harsh truth soon enough.
“It was fine,” he said. It was the opposite of fine. “Where’s your mom?” As soon as the words left Ian’s mouth, Lyana came into the kitchen, an extra skip in her step and a smile from ear to ear, like nothing had happened the night before. Ian swallowed the lump in his throat and looked at her. She looked radiant. Maybe the doctor got it wrong. Maybe they misdiagnosed her. Lyana was standing in front of him as vibrant as she was the day he married her.
None of it made any sense.
He leaned over and kissed her cheek, “Ly, can we talk for a minute?” She gave him a puzzled look, but nodded. He took her by the hand and led her to his study. The kids didn’t look up as they walked away.
Once they were safely out of ear shot of the kids and the study door was closed, Ian sat Lyana down and began telling her about his meeting with the Dr. Rapha.
“Do you remember those tests you took at the hospital?”
The question clearly took her by surprise. Her smile slowly faded. She nodded.
“We need to go back to the hospital to talk with him.”
“When?”
“In just a few hours,” he said. Ian took a deep breath. He knew what was coming next. His wife wouldn’t leave it at that.
“What did he tell you?” The joy he had seen in her eyes just a few moments earlier was completely gone now.
Ian wanted to tell her everything but knew he couldn’t. Reluctantly, he lied.
“That’s all I know.” He convinced her that his meeting earlier was in fact to discuss Zach, but that her tests had come up in conversation and the doctor wanted to see them both to discuss what they’d found. He gave no indication that he knew what was coming and she trusted he was telling her the truth.
It was crushing for Ian. He had never lied to his wife, but he knew he couldn’t do this alone and needed Dr. Rapha to be the one to tell her. How could he look at his wife and tell her that soon she would forget him, their life, all the memories? That their children would become strangers occupying space in the same house, a house that would also feel unfamiliar. The hardest part to think about was the combination of Lewy Body with Locked-in Syndrome. Even Dr. Rapha struggled to explain how they might work against her in tandem. It was a medical anomaly, particularly for someone her age.
Ian had called Lloyd on his way home and asked if he could come over to be at the house with the kids while he and Lyana met with Dr. Rapha. The kids were certainly old enough to stay on their own, but knowing what was coming and what they had all just walked through with Zach, the thought of leaving them alone unsettled him. They would be in good hands with Lloyd. Lloyd was the only other person who knew about Lyana’s tests and was happy to help.
Lyana was upstairs getting ready while the kids remained in the kitchen working on the puzzle. Ian sat down and joined them, picking up a few pieces and searching intently for where they belonged. He nonchalantly mentioned to the kids that they needed to go back into town for a few things and that Mr. Warner was going to come and stay with them.
Zach smiled and went back to concentrating on the puzzle.
“I am too old for a babysitter,” Ariel complained, but she didn’t push it. “But that’s fine. Maybe he’ll bring some of that delicious, sugared bacon.”
When Lloyd arrived, he and Ian exchanged a look. Ian glanced over at the kids and saw Zach looking directly at them. His expression was unreadable.
“I think I need a break,” Zach said. He put down the piece he had been working on and let out a sigh. “I could use a nap.”
Ariel shrugged and stopped working on the puzzle too. She looked up at Lloyd. “You didn’t happen to bring any tasty food, did you?”
“I’m sorry, no. I didn’t. But I can make something for you here if you like.”
“Okay. Popcorn, then. I’m gonna watch a movie.” She left the kitchen and headed to the living room.
Lloyd turned to Ian and Lyana, “Popcorn?”
Lyana pointed. “It’s in the pantry.”
Ian mouthed a “thank you” to Lloyd, then led Lyana into the garage, closing the door behind them.
Thirty
Lewy Body Dementia.
Lyana couldn’t believe what she was hearing.
Ian held her hand as he sat next to her in the doctor’s office.
She was only thirty-six-years old. It was unbelievable and shocking. She looked over at Ian, but he had his head in his hands.
“Doctor, with all due respect, there must be a mistake,” she insisted.
Dr. Rapha explained that he had consulted with several of his colleagues because he, too, found it hard to believe himself and there was so much about her diagnosis that left him perplexed. He had been in the medical field for thirty years and had never seen anything like it.
Calmly, Ian asked, “What happens next?”
Lyana looked over at him, her eyes wide with shock.
“How can you ask that? How can you just trust that this is all true? You’re not fighting it!” She turned to the doctor. “We’ll get a second opinion.” Then back to Ian. “Tell him we need a second opinion, Ian!”
Ian opened his mouth to speak, but just then there was a knock at the door. A woman in her forties entered and leaned against the doctor’s desk, offering a gentle, if forced smile.
“This is Shelly Lewis,” the doctor said. “I’ve asked her to join us because she’s experienced at helping families work through difficult medical circumstances such as this.”
It all sounded so rehearsed to Lyana. She was still wondering why Ian hadn’t agreed with her about getting a second opinion. And upset that he had lied to her.
“Why don’t you take a moment,” the counselor said. “This is a lot to take in.”
Lyana jumped out of her chair, not saying a word to anyone. She brushed past Ian without making eye contact and swiftly headed to the bathroom. He got up and followed but by the time he caught up, the bathroom door was swinging closed.
She thought she might throw up, but the feeling passed. She leaned back against the bathroom wall and slid down to the floor, pulling her arms around her knees and burying her head in them. A single word echoed in her head: Why?
In time, she’d cried herself out. She stood, splashed water on her face, then walked out into the hallway.
Ian reached out his arms to hug her. She refused the gesture and walked right past him, then stopped suddenly and faced him.
“How dare you keep this from me? You knew!”
“Please, Ly, let me explain …”
“You lied to me!”
“What choice did I have?”
“Have you been lying about anything else?” She practically shouted.
Ian looked totally shocked. “Have I … what? No. I promise.”
She sat down on a chair just outside Dr. Rapha’s office and buried her head in her hands. Ian knelt and placed his hands on her knees and explained everything. She heard all his words, but none of them eased the pain. It just wasn’t fair.
“How are we going to tell the kids?” She started to cry again and leaned into Ian’s extended arms. After a few more minutes, she stood up and Ian led her back to Dr. Rapha’s office where the four or them discussed that very thing. The thought of her children without a mother was unbearable. And she shuddered at the thought of them seeing her as a shell of herself.
Lyana declined Ms. Lewis’s offer to tell the kids about the diagnosis and decided it would be best for her and Ian to deliver the news to Zach and Ariel on their own. She said they would feel betrayed if they heard the news from someone else.
Ms. Lewis expressed concern that this would be a lot for the Keane children to take in and reiterated that she would be there to help walk them through everything. Dr. Rapha also reminded them that he was only a phone call away.
The car ride home was silent. Somber.
Lyana barely said two words to Ian. She was still frustrated with him for not telling her the truth earlier. She understood his reasons, but it certainly didn’t make her feel any better.
Doctor Rapha had gently explained before they left that they had essentially gotten more than one second opinion on the diagnosis, since the condition was so unexpected, and so rare. The doctor had seen to that himself, just to be sure.
The diagnosis certainly explained the episodes, the visions, and feelings of confusion, but there were still so many unanswered questions.
“I’m sorry,” Ian said quietly as he reached over and grabbed her hand.
“I know,” she replied.
Ian opened the garage door and pulled the car inside.
Thirty-One
It had been almost a month since Ian and Lyana shared the news with Zach and Ariel. A day that would forever be etched in their memories. The before and after moment for their family. Up until then, Lyana’s episodes had remained a mystery and while abnormal, they were brushed off and chalked up to exhaustion or lack of sleep. Now, not only was there a diagnosis but there was a sense of fear knowing what was ahead.
They were forced to face the harsh reality of Lyana’s mortality.
Lyana was the glue that kept the family together, and the thought of doing any of it without her was excruciating.
