FREDA kept losing her husband.
There were many times when she thought she’d lost him, but he would rally, surprising her and the family members who, at the urging of his doctor, had joined her at bedside to say goodbye. Freda’s emotions were whipsawed by these false alarms to the point where her heart became numb, and the man in the hospital bed, the man she’d met and married thirty-two years ago, appeared as if a stranger.
That feeling, like Charlie, eventually passed away, and despite the guilt she carried she was able to mourn his loss as fully and deeply as any widow would. But then, every time she thought her grieving was complete, something or someone would pop up to remind her of him. It was like losing him again, and she found herself working through the grieving process – every one of those damned five steps – all over again. The most recent Kubler-Ross trigger was a letter addressed to Charles Hayden that arrived six months after his death. It was from his second cousin Harold, who clearly hadn’t heard the news, probably because he was serving 8-to-10 for bank fraud in the Federal facility in Allenwood.
Freda thought about marking the letter “Deceased” and handing it back to the postman, but it seemed a cold way to communicate Charlie’s passing, even to a relative as distant as Harold. In the end she decided to open the letter, which brought her to an ethical fork in the road because Harold was asking Charlie for money. The letter explained that Harold needed $100 for legal filings to get his conviction overturned. He promised never to bother Charlie again if he would help this one time.
Should she ignore the request, she wondered? Or send him $50 along with a note of encouragement? Or maybe just the note of encouragement, along with the fact of Charlie’s having died? She worried that if she sent Harold money and he gained his release he would show up on her doorstep to thank her, a frightening thought now that Charlie wasn’t around to keep him at arm’s length. Harold had once propositioned Freda at a family Christmas party, catching hold of her beneath the mistletoe and refusing to let go until she complied with the ancient custom. Luckily, Charlie walked by and led Harold back to the punchbowl, the place where he’d imbibed the courage to proposition her in the first place.
Charlie was there to rescue her then, but where was he now?
So it was that Freda again found herself rummaging through the box of items she’d saved from their hospital stay. It included Charlie’s notebooks, the ones he’d used to communicate after he’d been intubated and his voice disappeared behind a maze of plastic tubing and Velcro straps. The notebooks were precious to her, but painful. As she read through them, she relived their struggle for what must have been the fiftieth time.
Charlie without a voice was an odd thing. His voice was what first caught her attention as it boomed out over the din of the crowded bar where they met. She was out with girlfriends celebrating someone’s birthday when she heard that rumbling, deep baritone laugh, and turned to find its source. When she did he happened to look in her direction and she smiled.
Later he wandered over and bought a round for her and her friends. As they stood there in conversation waiting for the drinks to be served, his voice captivated her, resonated with something deep inside her. Afterward she couldn’t remember much of what he’d said, but she couldn’t forget the sound of that voice.
And now it was gone, silenced forever.
His hospital room appeared to be two completely different places depending on where one sat or, in Charlie’s case, lay. From his point of view it resembled a mid-priced hotel room in need of a mild upgrade. There was a flat screen HDTV hanging from the wall, a comfortable-looking recliner, a sink and countertop situated beneath a series of large cabinets, and a couch that could be unfolded into a day bed. The wall to the right consisted of all windows and a vision of the city’s skyline.
Visitors, sitting on the couch across from him, had a different view. They saw a high-tech hospital bed (Charlie joked that when he was left alone it became the smartest thing in the room) surrounded by plastic tubes and wires that emerged from the wall and machines behind the bed that disappeared inside Charlie. Each machine had a unique alarm that beeped whenever it perceived a problem within itself, and a screen that displayed numbers the visitors couldn’t interpret. Their screens emitted a sickly grey or green light that, at night, added to Charlie’s struggle to sleep.
Twice each day, at shift change, nurses gathered in groups of two or three in the doorway to Charlie’s room to formally hand over responsibility for him. Protocol required the departing nurse to give the arriving nurses a detailed report on the patient. Charlie found it awkward hearing himself discussed in the third person. He thought it made the nurses uncomfortable as well because they would lower their voices to a whisper. He tried to give them some privacy by turning up the TV set, but then would worry that he might be missing critical information. The nurses had access to his computer file and he knew that they saw things there – a surgeon’s report, a new test to be scheduled, a troubling test result – things that Charlie had yet to be told about.
Sophia’s first shift caring for Mr. Hayden was uneventful. She found it hard to get a fix on him. According to his chart his chances of survival seemed slim. It was his weight that was against him. Freda was a great cook, and as a result there was simply too much of him. His heart couldn’t keep his lungs clear without massive doses of diuretics. Being bedbound for months at a time didn’t help. His muscles atrophied such that it took three people to shift his position to prevent bedsores. Despite all this he appeared to be comfortable, though when he didn’t know she was watching, Sophia saw a vacant space behind his eyes, as if he were somewhere else, or trying not to be anywhere.
“How are you feeling today, Mr. Hayden?”
Charlie motioned for Sophia to hand him his notebook and she helped him steady it as he wrote:
Not bad. Been worse. Hope for better. And call me Charlie
“Well then, Charlie” she said in a soft voice as she adjusted the pillow behind his head, “You’re looking pretty good this morning.”
You’re trained to say that
He wrote this in a scrawl that was becoming smaller as time went by. At this rate it might disappear altogether. Then he added:
But it helps to hear it – lie or no
“How was Mr. Hayden?” the Charge Nurse asked Sophia when she returned to the nurses station.
“He’s very nice, a gentleman, but I’m afraid he’s getting discouraged. I guess it’s natural given how long he’s been here.”
“He must be tired and frustrated,” her supervisor said, “ Maybe a referral to the Psyche folks would be a good idea.”
Charlie was dozing, Freda sitting in the chair by his side, the television on with the sound turned down when the team of doctors walked in. The chief physician led the way, followed by his ever-changing flock of residents, interns, fellows and physician assistants, like baby ducks who’d imprinted on him. They stood off to the side as he examined Charlie. Freda noticed how the TV screen mesmerized the men in the group despite the lack of sound. The doctor said his piece and waited for Charlie’s questions.
I’m deteriorating, Doc. I’m tired, weary and short of breath
“We’ve told you a number of times, Mr. Hayden. It’s a waiting game at this point. The surgeons say your lungs are still too compromised to think about surgery for your heart right now. You need to improve before we can think about that.
I can’t get stronger just lying here. You can only spend so much time in this environment before other systems start to wear down
“We understand that Mr. Hayden”, the doctor said, looking around for nods of agreement from his flock. “But it’s all we can do for now. We’ve used up just about all of the arrows in our quiver at this point.”
At this Charlie set his notebook on the tray beside his bed and lay back, closing his eyes, signaling that the conversation was over. Freda spoke up then, hammering the doctor with questions about treatment options that she’d read about on the Internet. He responded to each one, rejecting each with a brief comment and a condescending smile. After he and his flock made their way out of the room Freda and Charlie looked at each other, half-smiled and shook their heads slowly back and forth as if to say, “Do they have a clue?”
Charlie’s smile faded as he reached for his notebook and wrote.
How much time, how many chances do I give them to fix things? I can only hold out for so long
Freda nodded to show that she understood, sure that there was nothing she could do to change things.
It’s taken three months to figure out who’s who around here!
A dozen or so staff moved in and out of Charlie’s room each day and, working together, he and Freda solved the color code of the uniforms they wore. This helped them understand what was about to happen whenever someone new entered the room.
White was for nurses, who complained to Freda that, given the patients’ propensity for freely sharing their bodily fluids, this traditional color was impractical. At the end of their shift nurses compared the various blots dotting the front of their uniforms and argued about who had had the worst day. They could point to any stain and identify the patient who produced it.
White jackets with their names embroidered at the breast were the traditional norm for doctors, but also worn by other specialists – dieticians, therapists and the like.
Green was for nurses’ aides, the people responsible for the patients’ intimate care, and their visits were usually welcome. When a green uniform walked into the room it was almost always to help.
Blue was the color of respiratory, x-ray, physical therapy and related specialties. Their appearance meant that the patient was likely to be manipulated or assaulted in some way.
Green polo shirts and khaki trousers were the uniform of the hospital transport team. Their arrival meant that the patient was going somewhere for a procedure, often one that he had yet to be told about.
One time a woman in purple scrubs – a color that Freda understood to signify either royalty or spirituality – passed by Charlie’s room. Freda couldn’t remember ever seeing the color before. She went to the door and looked down the hall in both directions, but didn’t see anyone. She never saw the woman or anyone wearing that color again, and questioning the staff didn’t solve the mystery. No one would admit to knowing the person in question or what that color uniform meant. The incident had occurred on a particularly bad day for Charlie and eventually she came to believe that she’d imagined the woman. She decided that it must’ve been her subconscious craving deliverance or a sign of hope.
Just cannot catch my breath – I’m in crisis! I want to be sedated – this is too much to bear
“Hang on, Charlie” Freda said, “I’ll get the nurse in here.”
As she walked to the nurses station Freda thought – me too, Charlie! You think it’s a bed of roses sitting here all day, every day watching you struggle? Don’t you think I’d like to be sedated too?
Family members and Charlie himself expressed admiration and sympathy for what Freda went through every time Charlie was hospitalized, but their words of appreciation did little to relieve her stress or prevent her recurring migraines. It made her recall the story about a man who lost control of his bladder while wearing dark trousers. It gave him a warm feeling at first, but no one noticed, and in the end it was cold and uncomfortable.
She found it impossible to predict how people would react to their situation. People she thought of as mere acquaintances surprised her with flowers and notes of encouragement while some of those closest to her offered little in the way of support. It’s when you’re in crisis, she thought, that you learn who you can count on. Her own brother had taken his sweet time to visit them in the hospital, despite being retired and free to travel the measly 100 miles that separated them at any time.
In the end she realized it was all up to her. No one else would ever understand what she was going through, or be able to take this burden from her. She knew that even the doctors and nurses, as sympathetic and caring as they were, went home to their families at the end of each day and gave little thought to Freda sitting there in the dark, watching Charlie struggle to breathe.
She came back to the room and stood by his bed. His eyes were still closed. Sensing her presence, his left hand released the notebook onto the bed and reached for hers.
“The nurse said she’d be in with a dose of medicine for you, and she’s paged the Respiratory Therapist. I heard her do it myself. He’ll be here as soon as he finishes with a patient one floor down.”
Charlie pointed to the notebook lying on the bed between them. She picked it up and read.
At some point I can’t help but think of giving up – I won’t stay on a ventilator. That’s not living
Freda nodded and squeezed his hand to indicate she understood.
Charlie’s cousin, despite the lack of financial help from Freda, had successfully manipulated the system and been released from Allenwood. Harold walked out the front gate with a cheap suit of clothes, two pair of underwear, six $5 bills, and a travel voucher.
Undiscouraged by a lack of response to his letter, he used the voucher for a ticket to Charlie’s town. Fact was, he’d received so many hateful replies to his requests for money from the other Haydens that Charlie’s failure to respond to his letter seemed encouraging by comparison.
Freda stared out the small glass window in her front door at the man who’d rung her bell. When she realized who it was, and that he had seen her face, she opened it and invited Harold in. She sat him on the couch and went to the kitchen to make a pot of coffee, thinking about how to break the news to him that Charlie was gone. As she was pouring the water into the back of the coffeemaker she realized that she’d forgotten to put away Charlie’s notebooks, which were scattered across the table in front of Harold. As soon as the steamed water started to drip into the dry grounds she rushed back to the living room.
“Let me get these out of your way, Harold.” she said as she stacked and placed them on the fireplace mantel.
“Yeah, sure. What’s up? You writing poetry now or what?”
“No, no,” she replied, “Actually, these are Charlie’s writings. See…I guess you haven’t heard, but Charlie is…was…well, he spent a lot of time in the hospital before he…passed. These notebooks are how he communicated with us when he couldn’t talk.”
“Wha?” Harold responded. “You tellin’ me ol’ Charlie kicked off? I mean…um…he’s really dead?”
“Yes, Harold. I’m sorry to be the one to tell you, but your cousin is ‘really’ dead. He passed away six months ago after a long stay in the hospital. They tried everything to save him, but it just wasn’t meant to be.”
“Phew!” said Harold, shaking his head. “Charlie’s gone, huh? Hope he left you okay. I mean, lots a men, they don’t think what might happen after their gone. So…did he do right by you?”
“Well, that’s not something I feel like going into detail about, but yes, he left me comfortable enough. Charlie was a good man.”
“I know, cousin, I know. Charlie was the best. Too bad he’s gone. I was hoping maybe he coulda fixed me up with a small loan, you know, so I could get back on my feet again after leaving…after getting out. You don’t suppose you…?”
“Sorry, I don’t have much in the way of spare cash right now. Oh goodness,” she said, changing the subject, “That coffee must be burning in the pot. I’ll be back in a minute. You make yourself at home.”
“I will, cousin. I’ll do just that.”
Janice, the clinical nurse from the hospital’s psychiatric staff paid a visit and asked Charlie if he or his wife would like to take advantage of their services. Freda urged him to accept and so he did, thinking that it couldn’t hurt. When Janice returned for their appointment she asked Freda to wait outside, saying that it was important that she speak to each of them separately. She sat on the couch across from Charlie’s bed and studied his face for a moment before speaking.
“Tell me how you’re doing, Mr. Hayden.”
Charlie looked at her and thought for a moment, then motioned for her to hand him his notebook, in which he wrote:
My days ain’t been too pleasant lately. Is today Friday? I think I lost another day
“You look well, Mr. Hayden. I’m sure you’ll come out of this fine.”
Charlie lay silent for a full minute, his notebook and pen in his hands. He lowered his eyes to the paper and began to write. When he finished the nurse took the notebook from his hand and read:
You’re lying – I understand – everybody does
She couldn’t contain a rueful smile as she handed it back and said, “Let’s focus on the future, Mr. Hayden. I’m sure things will work out in the end for you.”
Charlie had begun to write even before she finished and quickly handed the notebook back to her.
I don’t think much about the future – just day to day – it’s all I can handle. But we’ll all know the ending soon enough, I think
“That’s why I’m here, Mr. Hayden, to help you through get through these days. Tell me, what’s your biggest worry, your worst fear right now?”
It’s Freda – she’s been through too much – I worry she won’t make it to the end. She’s suffered as much as I have and I need her to be strong when the time comes
Janice placed the book on the bed next to Charlie and said, “That’s why I’m here, Mr. Hayden. I’m here for both of you. I’m sure I can help your wife deal with the situation.”
She held her right hand up, palm open, saying, “I’ll be back, Mr. Hayden. You hang in there. I’m going to go talk to her now.”
Her conversation with Freda took place in the Day Room, a corner area bright with light from the tall windows looking out over the city. They found a quiet place and sat across from each other. Freda got right to the point.
“I’m terribly anxious because of Charlie’s condition, and I’m having a lot of trouble sleeping. Is there anything you can give me to help me deal with it?”
The nurse didn’t bother probing further. The deep circles under Freda’s eyes said it all.
“I’m going to give you prescriptions for a couple of things that should help – a strong sleep aid and a mild tranquilizer, but I have to warn you that these are powerful drugs and need to be taken carefully. Don’t take more than is listed on the bottle, and don’t drive after taking the Xanax until you’re used to its effects.”
“I’ll be very careful with them. Don’t you worry,” Freda replied, reaching for the slips of paper.
One of the few times that Freda felt fully comfortable leaving Charlie alone was when Leandra, the hospital’s music therapist, happened by. Freda saw how Charlie’s mood improved after her visits and encouraged them.
A tall woman in her late twenties, Leandra had an oval face framed by short dark hair and dominated by a large smile that emerged at the slightest provocation. With the help of her bulging fake books, she could play any tune Charlie named. If ever he had trouble coming up with a suggestion she would pull open one of the thick, three-ring binders and shuffle through it. She had an uncanny ability to pick songs that spoke to him and his situation in ways he would not have imagined.
As helpful she was in lifting Charlie’s spirits, the effect of her visits was ultimately temporary. An hour or two later he would look at the things around him and be reminded that nothing had changed. He was still stuck in bed, wires and tubes emerging from his body, the TV still directly in his line of sight, still muted and tuned to a mindless reality program, with nothing to look forward to but more of the same. He would succumb then to feeling sorry for himself, convinced that he would never leave this bed, his future full of painful procedures that did nothing to stop his heart’s decline. The thought of continuing to waste away in this room until his last breath was too much to bear.
He pushed the call button for the nurse, and when she appeared, he held up his notebook in which he’d written in large, block letters:
Pain meds, please, as soon as you can?
The nurse nodded and left to get it. As he waited, he thought about Freda. The poor woman, sitting by his bedside for months on end, doing her best to buoy his mood, advocating with the hospital staff any time she thought they were doing something that put his health at risk. More than one nurse had told him, “Remember, she’s undergoing everything you are, plus she’ll remember it. You probably won’t.”
At that moment Freda walked in carrying her lunch. She set it down on the counter and came to the bedside. Stroking Charlie’s forehead she looked down and smiled.
“How are you feeling, Charlie?”
Hard work to breathe…very tired, just very tired
“But your color is good, and the nurse told me that the issue with your Potassium level got resolved.”
Ah…one thing leaves, another will take its place
“Don’t worry. And don’t give up. Things will get better.”
At this Charlie set the notebook down on his stomach and closed his eyes, his way of disagreeing with Freda without being disagreeable. Then he picked up his pen and wrote.
It’s alright – no more fear – there’s nothing else the universe can do to me
With his mouth blocked by the trappings of the ventilator, Charlie had a tube that snaked through his left nostril and down his throat. It provided a safe path to his stomach, and was used to feed and medicate him. He was getting upwards of twenty pills a day, which the nurses would grind into a fine powder using a special device made for that purpose. They would then mix the powder with tap water to make a concoction that could be flushed down the Ng tube using a syringe without a needle at its tip. Freda hovered nearby as they went through the process, and the nurses showed her how the device could reduce even the hardest tablet into powder. She watched as the nurse pulled a fresh syringe out of a drawer and filled it with the blend of medicines.
“Is it safe to use water right out of the tap like that?” Freda asked.
“Sure,” the nurse told her, “We all drink that water, don’t we?”
After Harold left, Freda picked up the stack of notebooks from the mantle and saw something was amiss. She found that one of the notebooks, the last, was missing. She took the stack and returned it to the box that held all the items she’d brought home from the hospital.
Freda wondered how long it would take Harold to read through the notebook and come to a conclusion, wrong though it might be, about what happened to Charlie. She was sure that once he did he’d be back.
One morning Freda arrived at the hospital thinking that Charlie was gone, but when she looked closer she saw that he was right there in bed, his grey hair and pale face camouflaged by the jumble of white pillows and blankets. His eyes were closed. She moved slowly so as not to wake him, and sat in the chair next to his bed. She opened the cup of coffee she’d brought and slowly sipped it as she agonized over what Charlie had asked of her. She was sure he was wrong, maybe out of his head, but he’d been so convincing, so certain.
What would you decide? At some point you just give up and start looking for a way out
“Charlie,” she countered, “Things can change, but if we go through with this…?”
He held his hand up motioning her to stop and began to scribble in the notebook as quickly as he could.
Hard work to breathe – I’m exhausted love
“But what if it turns out you’re wrong?” she said, staring down at what he’d written. “What if the doctors come up with something new? By then it’ll be too late.”
Charlie reached for the notebook and began to write:
Can’t be afraid of regret – it’s inevitable – fear of it paralyzes you – once you accept that there will be regrets no matter which path you choose, then you’re free to do whatever your heart tells you is right
Freda thought about the word as she sat before the fire after Harold had gone. The box of hospital artifacts sat on the floor next to her and Charlie’s final notebook was sitting open on her lap.
“How much?” she’d asked Harold, waving her checkbook in front of his face.
“I think a grand would cover it, cousin. That would get me a fresh start out west.”
Freda wrote out the check, ripped it from the pad and held it out, waiting.
“What about the notebook?”
“Oh, sure. Here you go,” he said, passing it to her with his left hand as his right reached for the check.
“I sure do appreciate the help. We all have to support each other, don’t we? That’s what family’s for, right?”
“Whatever, Harold.” Freda responded, shutting the door before he had a chance to say another word.
Maybe Charlie was able to come to terms with it, but not her. It was easy for him to accept, him being gone and all, but she was still here and had to live with it, to be reminded of it each time someone brought up his name.
She dropped the notebook to the floor and stared at the pile, trying to decide what to do with them. It seemed wrong to destroy things that contained so much of Charlie, but she knew that anyone reading it in the future would come to the same wrong conclusion that Harold had. She didn’t have the strength to deal with all the questions it would raise.
She began ripping the pages out and feeding them to the fire until the last notebook, the one she’d paid $1,000 for, was reduced to ash.
There was that, and guilt of course, the two things inseparable, haunting her every time she thought about the slow, terrible course of Charlie’s death. Despite the doctors’ best efforts, it took eleven long days for his struggle to end.
She reached into the box of odds and ends and began tossing the rest into the fire. Maybe this will help clear the slate, she thought. She pulled the last item – a syringe still filled with a concoction of tap water, Ambien and Xanax – and watched it slowly melt in the flames. As the liquid turned to steam some of it drifted out into the room, enveloping her head and stinging her eyes.
Photograph by Elise Matich