It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
A short story by:
A Kiss Goodnight…
7:00 pm –
She heard the gentle alarm on her cell phone. The chiming bell sounded “ting, ting, ting” over and over until she hit stop. It was another reminder set to keep her on schedule for her husband’s needs. This one was set to remind her it was time for her husband to take his medications. She rose from her chair, enjoying just the briefest of moments to relax before it was time to begin the next process of caring for her terminally ill husband.
I am not hungry
The voice sounded robotic and cold, enunciating every syllable. She thought the computer her husband used to communicate with her sounded especially harsh and abrasive this evening. She looked down at him.
She sighed. A bit too heavily, as she wasn’t in the mood to argue with him this evening. She could feel another of her headaches coming on, and she knew that she still had hours to go before she would be able to rest again.
“Just one can?” She asked. “Please? You have already lost so much weight this month. I will add your medication as soon as you have something else in your stomach. Remember how uncomfortable you feel when you don’t have something in you before you take your meds?”
His face never changed its expression. Not one muscle moved or twitched. His head bent awkwardly to the side, a pillow supporting it but not quite enough to hold it up in an upright position, while his jaw pulled his mouth down. Gravity was stronger than the strength he had left to hold his mouth closed. The only movement left in his entire body was the tiny movements of his eyes as they stared at the computer tablet, attached directly in front of his face. His eyes darted from one letter to another on his tablet. The computer light illuminated the sharp edges and deep creases of his face and exaggerated the shallowness of his cheekbones. She glanced down and could see the towel under his chin needed changed. There was drool sliding down his neck, drenching his collar. Somehow, no matter where she placed the towel, it was never in the right place to keep him from drooling all over his clothes.
She stood patiently waiting. She knew, after years of frustrations and tears, how upset he became if she tried to read over his shoulder before he was finished typing. He hated when she would answer him before he had typed his comments. The waiting was the hardest part. Patience had never been something she was good at, but over the years, she had managed to perfect her poker face. She remained still as she stood next to his wheelchair. Mentally, she went through the list of chores she still needed to complete before she could get a few precious hours of sleep.
She still had hours of work to do, and it was already Wednesday night. She tried to mentally calculate what her clients’ needs were and how long she would need to finish the project before Friday. Would her boss be as patient with her as all the other times she had missed her deadlines in the past? He had been more than fair and accommodating to her and her situation, but he would only be so patient. How she hadn’t been fired by now, seemed almost impossible. She would have fired herself if she had had to deal with an employee in her situation. How had she gone from a rising star in graphic design to a part-time employee that only got the worst of the worst clients?
There were shiny awards hanging in her office, reminding her that just 10 years earlier, she had been an independent, strong-willed woman who had started at one of the best marketing and advertising companies in the country. Her salary had increased as her clients had continued demanding her for their work. She had created a team of people under her who had built up the company faster than anyone else in the industry. Those awards reminded her of what she had accomplished in so little time. They also reminded her of all that she had lost. She had finally built her life exactly the way she wanted it, only to have it all ripped away from her, piece by piece.
A year after her big promotion, she was the lead graphic designer on a team that pitched campaigns to firms across the country. She had been so focused on her work, she had little time for a social life. Fate had other ideas and had practically forced her into the arms of someone…quite literally. She liked to think it was love at first sight for him, because she reminds him that his chivalry was overlooked by her hurt pride. Kate smiled fondly when she remembered how she met him.
Her boss had asked her to put together an advertising pitch for an architectural firm. They had less than a week to get it right. Her team was instructed to develop a marketing plan and to pitch their ideas to the head architects by the end of the week. Kate arrived early, rushing to get to the conference room early to have time to set up, her arms loaded with files and her briefcase barely hanging onto her small shoulder. Kate was frustrated, trying to end the call with her mother. As she rushed to jump into the elevator before the doors closed, her high heel landed in the crack of the elevator and the forward momentum threw her straight into his arms. Her files had spilled everywhere, and her face had crumpled with irritation at the inconvenience. His arms remained around her and she looked up. He was smiling.
She politely asked him to let her go, only to stumble. Her high heel had been broken. Kate was forced to pick up her files, shoving them in a pile and trying to quickly get out of there. Her face had been bright red. Kate managed to hold onto her pride long enough to look at him and say,
“The tenth floor, please!”
She then reached down and yanked off her other shoe. His smirk left her less than amused. He held his composure and leaned over to hit the button. As the doors opened once again, and she hobbled out of the elevator and towards her office. Her head held high and the sway of her hips a little more pronounced as she stomped away.
An hour later in a conference room, her voice filled with confidence as she talked about why the firm should choose this marketing campaign, her shoes now replaced with a pair of flats that were a bit too small from Jody across the hall. As she was pitching her ideas, her voice stuttered, and she lost her train of thought as she made eye contact with those same blue eyes and cheesy grin she had just marched away from not less than an hour before. It was the same man from the elevator.
After her team had pitched the idea, she bolted for the door. He followed her and had tracked her down before she could close her office door. He repeatedly asked her to go to dinner, but she managed to hold him off until after the marketing campaign was finished. Six months later, she finally agreed to have dinner with him.
She fell in love with him quickly. He was everything she had ever wanted. Tall, with dark hair and a boyish grin. He had kept his hair cut short since it was so curly, and it had been his piercing blue eyes that had sent shock waves throughout her entire body. He had been one of the lead architects and was well respected in his field as well as his firm.
Craig and Kate were married six months later. He was the man of her dreams. Her life was finally complete. Two hard working people, great incomes, and so much more to look forward to. She had everything she had ever dreamed of. Her friends had all shrieked with jealousy as they learned about her promotions, and the shrieks turned to excitement when she showed them her engagement ring.
After the wedding, they had talked about waiting a few years before trying for children. Maybe travel first, buy their dream home and have a nice little nest egg built up before they added to their family. They dreamed about what a baby girl would look like. Would she have curly dark hair like her father? Or green eyes like her? Maybe a boy who would look just like his daddy?
Her heart ached with the thought of what might have been. Instead, she looked down at her ragged clothes, and looked around the small room. She reached for the television remote, turning it off, and sighed again. Thinking of all the what if’s or the if only’s never made her situation any better. She stood, trying not tap her foot in irritation. She glanced away, waiting for the robotic voice to say something and tried not to feel the pain of loneliness and heartbreak.
Toilet Bed No food Just pain meds I am sorry I love you
Her frustration at his commands were compounded because she knew if she didn’t feed him than he would end up shitting all over himself in the middle of the night, which would take her at least two hours to clean up. She rolled her eyes, walked to the back of his wheelchair and turned on the control to move him towards their bedroom.
His sponge bath and teeth cleaning were finished. The routine of meds would take another forty-five minutes to crush them all and dilute them down small enough to be injected into his PEG tube. On a good night, the syringe wouldn’t clog, and it wouldn’t take as long. This night, luck was not in her favor. She knew that the kangaroo pump would clog, and the gravity feed wouldn’t actually speed things up, but since she had had to quit doing the bolus feeding after their backup pump had broken and the insurance company refused to replace it, she had to make do with what she had. Which meant that the four times a day when he needed medications and to be fed, it could take up to two hours each time.
He blinked three times.
This meant he had an itch on his face. She asked,
“Your nose? Your cheeks? Your forehead? Your Chin?” Touching her fingers to each location, until finally he would blink two times. That was the fastest way for him to answer yes without the aid of his eye-gaze.
She would do this while holding a syringe filled with various medicines in her other hand. Medicine for his anxiety, his pain, his depression, his insomnia, his stomach pain, and medicine for his swelling from sitting in a wheelchair all day. He had medicine to help with blood clots and as soon as his feedings were finished, and sponge bath were done, she would have to take care of his pressure sores with more medicine. Her back hurt. Still, there was more to do.
Next, she would have to do his trache care. He had chosen a tracheotomy when his breathing had become so shallow, he began hallucinating. It hardly seemed possible it had been almost four years earlier. When he could no longer take a deep breathe, and he was slowly suffocating, his family arrived in a fluster of opinions and outrage that he would so willing give up without trying. They convinced him to continue living.
His mother clapped her hands together in excitement and exclaimed it was, “God’s Will.” His brother and sister promised to help her with their brother’s care more. Nodding their heads, they hugged Craig’s bony shoulders and looked at her with sympathy in their eyes. They proclaimed over and over how they understood how difficult this must be for the both of them. His family promised to provide any support she would need to keep him alive, and so, she blindly and naively believed them.
When the doctors suggested the time had come for a tracheotomy, the paperwork had already been signed. And since he was so young and had so much to live for, Craig agreed. His family stayed for three days in the hospital before they had to “go on with their own lives.” But they reminded her to call them if she needed anything in the future!
She cleaned the area with disinfectant wipes, replaced and filled the cuff. She had done this for so long, there was no longer thought to her actions. Her hands moved quickly and efficiently. Kate would find herself singing as she went about her routine. Looking at Craig, her voice softened as she sang. Sometimes, she thought she could remember what his smile looked like.
Kate picked up the suction hose, and quickly placed it into the open hole in his neck, moving it as low as she could. Then the final push to get the suction machine deep into his lungs. And just as quickly, she removed the hose, and placed the breathing tube back into the cuff, making sure the air flow was adjusted and he was comfortable.
She had adjusted him multiple times, scratched his nose, scratched all over his body and adjusted him again. Each time asking yes or no questions to make sure she was doing what he needed.
She adjusted his tablet onto the metal arm that attached to the wall. One more piece of equipment that was supposed to make their life easier. Instead, it was one more thing for her to be responsible for. She was irritated, and her eyes were burning. Kate looked down at the bed, making sure his pillows were supporting his arms and legs, and he was tilted to his side. After years of trial and error, she knew that he preferred to fall asleep on his left side. The disease had ravaged his body. Instead of the tall, dark and handsome man in his early thirties, that she had married, now he looked more like a survivor from the concentration camps of World War II. His body resembled a skeleton, with protruding bones and sagging skin.
Early in the diagnosis, Craig had taken to waking Kate and asking for help. Over the years, it had become so routine, it was as if she were on automatic pilot. Just the sound of him whispering her name could jolt her out of her sleep. If they were lucky and the medication worked, he would fall asleep and stay asleep for at least two hours or more. This gave her time to finish any last-minute projects for work without interruption. Sometimes, she would simply sit, and enjoy the quiet.
His eyes looked up at her. She tried not to show her frustration. She gave him a small smile, and said,
“I’ll be back in in just a bit. I need to lock up the house. I’ll be right back. Are you okay? Are you comfortable until I return?”
He blinked his eyes twice.
She knelt down, gave him a kiss on his forehead and walked out of the room.
She walked around the small 2-bedroom house, full of medical equipment, supplies and tools that made her job as a caregiver easier. She grabbed the tubes and hoses and syringes, all the bottles and began methodically placing them back where they could quickly be found for the next round. She walked into the kitchen, loading the dishwasher with her coffee cup and all the items that required disinfecting. Had she eaten that day? She couldn’t remember.
She caught a glimpse of herself in the reflection of the glass above the kitchen sink. Her hair was on top of her head. Again, she found herself looking down at her clothes, then glancing up again to see the person staring back at her. When was the last time she had taken a shower?
She couldn’t remember the last time she had had her hair cut, or colored. Craig had always preferred her hair blonde. Now her hair was a mousy brown, dull and greasy. She glanced down at her clothes. She knew they were stained, tattered and sagging off of her. She lifted her arm up into the air, sniffing her arm pit. Her face scrunched up.
She tried to think of her work schedule. Would she have to do a video conference? Again, she mentally tried to envision her office. She was pretty sure the jacket she wore during video conferences was still laying on the chair when she needed to. It was her quick go-to when she needed to look somewhat professional. She would slap on some lipstick and mascara, throw her hair in a bun and the jacket could hide any spills or stains on the whatever shirt she was wearing that day. It was a quick fix to look professional. Many of her clients or co-workers had no idea of what her life had slowly become. She preferred to converse with her clients over email or by text. It was easier to hide her exhaustion if she was never seen. She seldom planned video meetings anymore, as she knew she seldom looked like a professional during a video conference.
The hot water scalded her hands. Pulling her hands away, she looked up towards the window. When was the last time she had gone outside? When was the last time she had left the house? It felt like months ago. She leaned towards the glass and looked closer. The glass was dirty. Like her. She noticed the lines that had deepened on her face. Her hair was turning grey. How was that even possible? She wasn’t even 40 years old. There were circles around her eyes. The picture frame in the window sill was turned towards her, as if to remind her of better days.
The picture showed a beautiful couple, bare feet on the beach, her head thrown back laughing, and he is staring down at her, adoration and love shining in his eyes. It was the moment Craig had proposed to her. They were so happy. He had lifted her into the air, her arms wrapping around his neck as he twirled her in the sunlight.
She reached for the picture frame…quietly laying it facedown. Those days were over now. Now, all that existed of that beautiful couple was a skeleton of a man, and a worn out haggard woman, and she had no idea when the last time she had laughed…and she couldn’t remember the last time he looked at her with out wanting or needing something.
She turned the sink off. Wiping her hands, she walked towards the front door, turning the bolt. She set the security alarm near the hallway, then looked down the hall. She should spend a few hours working in the guest bedroom. All the memories had drained her. She had no more tears left. She had cried more than anyone could possibly cry in one lifetime. But the memories…they could still catch her off guard. It was hard to feel anything some days. Work usually helped her mind focus on other things besides watching her husband slowly die. Tonight, work seemed to make her feel worse. Instead of walking towards her office, she turned towards their bedroom. As quiet as possible, she tiptoed into the room and stretched out on her mattress on the floor.
Listening for the quiet rasping of the breathing machine, and the soft noises of the house settling, she set her alarm on her phone for 3 hours. She knew he would wake her well before the alarm went off for his next suctioning. However, she liked to set her alarm just in case. She took a deep breathe and pulled the covers to her chin.
12:30 am – Sleep engulfs her…
She struggles to open her eyes. Kate hears the ventilator machine, as it pushes and pulls the air into his body. She lays there for a moment, willing herself to open her eyes and move. Every muscle in her body protests. She can feel her head pounding, her heart beating in her temples. Trying not to groan, she rolls to her side, looking up at the hospital bed beside her.
Her husband is sleeping. His eyes are not open. That is the only indication she has that he is sleeping. She gets up, touching his forehead with her hand. Should she suction is mouth and trache stoma? She doesn’t like waking him if she doesn’t need to. His eyes don’t open. She looks at his eyelids, looking for movement to see if he is coming to.
After a few minutes, she decides to lay back down. She lays the phone by her head and is asleep instantly.
Her eyes open slowly, taking in the sunlight coming through the shades. She stretches her body, trying to wake up. Trying to mentally check off the items on her to-do list she stifles another urge to groan. Kate comes fully awake when she is suddenly aware that the sun shouldn’t be coming through the window yet. She should have woken up hours ago. Turning her head, she sees her husband laying there. She whips the blanket off and jumps up, rushing to feel his forehead and check his vitals. The last time he had slept this long, he had been ill.
Her head cocks to the side, as if she is trying to solve a puzzle or riddle. She scans his face. She wasn’t expecting him to smile at her, or even to turn his head towards the sound of her. She had long since grown accustomed to the frozen expression on his face. But his eyes….they were still closed? She could see movement under his eyelids, as if he were in a deep REM. She stared, waiting for a moment. Holding her breathe, she wasn’t sure if she wanted to wake him so she could get on with their morning routine or if she wanted a few more minutes to herself.
Kate turns toward the bathroom, and begins tiptoeing, trying to make sure she doesn’t accidentally wake him. Knowing that if Craig wakes up now, she won’t have time to shower again, she cringes as the floor squeaks under her foot. She freezes, glancing back, expecting to see his blue eyes, furiously moving from side to side, trying to type out words to speak to her. His eyes are still closed. She gingerly leans over and opens the dresser drawer, grabbed the first thing she can reach, a pair of oversized sweat pants and she tiptoes towards the bathroom.
Her hair still dripping wet from the shower, and her skin still tingling from her efforts to scrub off days’ worth of grime with only a few minutes to spare, she searches Craig’s face as she walks slowly towards the bed. She stopped. She had expected his eyes to be open and the computer to be speaking to her about what he might need. The computer screen was still blank. She looked at the ventilator screen. The numbers varied up and down as the air was pushed in and out of his lungs. She could see his chest rising and falling with the sound of the machine.
Her stomach dropped.
Everything appeared fine. If anyone else had walked into the room, they would think he was sleeping peacefully.
She sat down on her mattress. The checklist of what-if’s began scrolling through her mind. He didn’t have a fever. His forehead didn’t even seem slightly warm to the touch. His breathing was stable. By all appearances, he was simply just sleeping. Not knowing what to do, she decided to lay back down. If he was sleeping, she might as well take advantage of it. It was so seldom that he slept for more than a few hours at a time. This time, she turned up the alarm sound on her phone to be sure she wouldn’t sleep through it, and she laid her head down. Her eyes closed, and she sighed. Kate seldom had the time to nap, or lay down during the day, and the thought of a few more precious moments to herself filled her with a small amount of joy. Kate closed her eyes with a small smile on her lips.
His eyes didn’t open. She reached for the suction machine. Sighing, there was no choice. She would have to suction his mouth and begin their morning routine. They were already hours behind on medications and feeding. His tube that supplied oxygen to his lungs would need to be cleaned again.
At least she had gotten a bit more sleep. She could be thankful for that. As she hit the switch to turn it on, she expected his eyelids to flutter open from the vacuum-like sound that filled the room. Startled that he didn’t even flinch, she flipped the switch to off. Her heart began racing, and her body began shaking.
Setting the machine down, she touched his arm. Gently at first, she squeezed his arm, stirring his body. Feeling the bones under her fingers, she squeezed harder. His face was blurry, as tears filled her eyes. Then she shook him. No response. She shook him harder, his head flopping from side to side. She couldn’t hear her screams.
His eyes never open…
The aide knocked and pushed the heavy door open, slamming the door against the wall, as she pushed her cart that carried the various supplies through the door. The aide managed to make more noise than a stampede of wild horses, and most people could hear her coming long before she actually walked into the room. She flipped the light on. The patient hadn’t moved. She looked nervously from him to his wife. His wife sat in the same chair, never leaving his side. Her hand was caressing his arm. She had been leaning close and whispering in his ear. She looked up. The look on her face showed she was clearly irritated at the intrusion.
“I’m here to check his vitals!” the aide said, a bit too loudly and cheerfully to be believed.
The aide hated coming in this room. She had worked in the Hospice House for almost ten years. Death was not something that scared her. She had witnessed it many times throughout the years. This time felt different. This patient was different.
It seemed so creepy to her that the man was just laying there. He looked like he was dead. The only indication that he was alive was the heart monitor that quietly beeped in the background. There was a bandage where the hole had been in his neck. Other than that, the man never moved. His eyes never opened, he never even flinched. Even when she checked the saline bag that provided hydration and nutrition to his emaciated body or bag that supplied his morphine drip, his body never showed a reaction to what was happening to him.
Everyone at the Hospice House hadn’t stopped whispering about the patient who had ALS. They couldn’t believe he was still alive. Many silently said a prayer, hoping God would take him and relieve his suffering. All of the staff members who had worked there had never seen someone who was so advanced or who was so incapacitated. God still hadn’t answered their prayers.
There was no movement, or motion from the patient. He lay there, day in and day out. Even after his wife had agreed to turn off his ventilator, the only machine that had kept him alive all these years, still he lay motionless. Only the wheezing sound from his lungs, as he quietly gasped for air proved that the man still lived.
After the patient had been brought in by ambulance, his entire family had shown up, causing such a scene the doctor had to ask most of them to leave. The wife signed the papers shortly after they left. Many of the staff members cried. The wife looked so frail and thin. Still, she took the clipboard, and signed. There was no indication as to whether she felt relief or sadness. No tears filled her eyes.
The machine had been turned off, and the tracheotomy tube removed from his neck. There were no secrets among the nurses and staff, so imagine the shock when the patient continued breathing on his own. The machine that monitored his heartbeat continued to move up and down…
Da dum…Da dum…Da dum….
The doctor assured her that he would stop breathing. The process would be peaceful and he would pass quickly. They administered morphine to keep him comfortable. Hours went by and still his heart continued to beat. His lungs continued to breathe.
The aide attempted a small smile towards Kate. Trying not to ignore her red rimmed eyes, or the look of pure exhaustion, the aide began humming as she set her cart next to the hospital bed. She had seen many families come and go through the Hospice Home, but this case was the one that frightened her. She had a tendency to hum when she was nervous. Glancing towards the wife, she felt such pity for the poor creature. Why wouldn’t the man just die?
“How ya doing today, honey?”
Her southern accent was usually comforting to families, but it was clear that neither of them felt soothed by Kate’s expression and the aide’s discomfort.
The aide went about her work, knocking over a few containers, and causing more havoc as she tried to quickly read Craig’s vitals and chart his information. As she went about her work, she glanced at Kate’s bowed head. She had never seen so much loyalty to stay by someone’s side before and she didn’t know why it made her want to run away. Most family members came and went from the room and seemed to be fine. Most families did an obligatory visit, then waited for the phone call that would notify them that the patient was close to dying. Families seldom lingered in the place where people were brought to take their last breathes.
Kate was different than the other family members she had met throughout the years. She wouldn’t let anyone help her and she would disregard any advice or urging that Kate leave for a while and rest or take some time for herself. The aide began humming a new country tune, trying to distract herself from her nervousness, as she began removing the old morphine drip and replaced it with another.
“When will the doctor be in? He hasn’t seen my husband in two days.” The small voice startled the aide, as she seldom spoke to many around her except the doctor.
“Please, there has to be something we can do?”
“Now Ms. Ray..NOR” ( She drawled out the last name with long syllables, trying to placate her.
“My name is Mrs. Rainier! Like the mountain.” Kate gritted her teeth. She had tried to be patient but feeling as if she were being placated was the last thing she needed at that moment. She doubted the aide even knew where Mount Rainier was. The woman didn’t seem like the type to know much about geography.
“I demand that a doctor come in here immediately, do you understand me?” Her voice had risen, and her cheeks were flushed. She tried to hide her frustration, but she was furious at what was happening.
“I’ll contact him again, ma’am, but I am just an aide. I don’t have any authority to do anything.” Her voice sounded nasally and only helped infuriate Kate even more.
“Then I suggest you find someone, because my husband has suffered long enough!” Her teeth were clenched so tightly, she thought for sure they would crack from the pressure. She rose and started walking towards the door.
The aide reached for her cart, quickly moved out of her way. She glanced back at the patient.
His eyes still hadn’t opened.
“Katie! Don’t you understand how horrible this is for me to watch? I am his mother! How can you just sit there? I don’t understand how you can do this, day in and day out!”
Kate fought the urge not to scream at her. She bit the sides of her cheek. Inside her head she imagined screaming at her mother-in-law, “MY NAME IS KATE…NOT KATIE!!”
The woman was raising her voice, trying to bring as much attention to herself as she could. Her other two children rushed to her side, as she fell, dramatically in the chair behind her, sobbing.
The doctor had been trying to talk to the family about what effects a body will go through after taking away his nutrition. He looked down at the patient, then toward his wife. The doctor wasn’t sure how much more Kate would be able to withstand. It looked as if a strong wind could blow her over at any moment. She had been this man’s caregiver for eight years. Now that they were finally down to the last hours or days, his family had come rushing in to pronounce their love for the poor, dying man.
The doctor tried to hide his disgust. This was not the first time he had encountered families like this. Often, the doctor would say what was necessary, then leave immediately. He had not become a doctor to deal with dysfunctional families. He had become a doctor to help others. He cleared his through and tried again. This time, he gentled his voice as he spoke to the woman, trying his best to ignore the racket of sobbing that was in the corner.
“I wish there was something more we could do, Kate. The law does not allow us to intervene. There are no laws in place in this state to help speed up death. All I can do is keep him comfortable and let nature take its course. Even if the Death with Dignity Act were to be passed here, it still wouldn’t apply to Mr. Rainier at this time, because there is no paperwork stating his final wishes.”
The mother began sobbing in the corner again, hiccuping and looking pleadingly at her other two children. She began crying about how he was dying to most gruesome death and why couldn’t someone just get it over with.
His disgust with the situation was beginning to show. Everyone was at their wits end. This was the most inhumane thing he had ever witnessed, and his hands were tied in what he was able to do. After the twelfth day of being taken off the ventilator, and it was clear the patient was not going to go into respiratory failure, he suggested to Kate that they stop all sources of nutrition. If they increased his morphine to keep him comfortable, his body would shut down.
That was four days ago.
The patient’s lips were cracked. If it were possible, his body had shrink deeper into the mattress. His curly dark hair was plastered to his forehead. Kate would run a wet cloth over them to try to help with the cracking. The body that lay on that hospital bed had suffered so much. If he had been a religious man, he would have stopped believing in God. No man deserved to suffer this way.
Kate stood up and looked at her husband’s family. Her voice was assertive but quiet. She asked them to leave. She would call if something had changed. The family glared at her, annoyed that she had put a stop to their show of support and caring in front of the doctor. Kate eased her way back into the chair that she had sat in for almost three weeks. She lowered her head onto her husbands’ shoulder and gently began whispering.
The doctor turned to leave. He heard her whisper, “I am sorry. Craig. I know you can hear me. I am so sorry. I couldn’t do it. I just wanted you with me. I had no idea it would end like this. If you can hear me, please. Open your eyes.”
The doctor gently closed the door behind him, a tear sliding down his face.
The doctor had stayed close. He knew it would be any time now. The Rainier family had made such an uproar, he had had to threaten them with police intervention if they did not behave. He felt the need to protect Kate as she held her vigil over her husband. He also wanted to intervene again if the family tried to cause another scene. There were many families that were suffering, not just them, but the Dr. had never seen a family so hell bent on causing a scene where ever they went.
He advised his nurses to make sure that Kate was eating and drinking. He offered her a room to sleep in, although she hadn’t left her her husband’s side except to shower or make phone calls.
After his rounds, he found his way back into the room. He had been a palliative care physician for almost thirty years. He had met and cared for humans in all situations and health stages. He knew he gave comfort to those in their final days and hours. It had always been his calling. He had been proud to have been a part of easing the final transition for family members all these years.
While the political debate had brought awareness to many in the country so many years ago about the Death with Dignity Act, the media had a feeding frenzy with Dr. Kevorkian years ago. After that fiasco, he had learned it was best if he kept his opinions to himself. Now, as he walked towards Craig Rainier’s room, he was filled with a fury he had never felt before. How had the system failed this man so badly? Why hadn’t he intervened weeks ago and given the man a lethal dose of morphine? He doubted anyone would have questioned his decision.
The doctor remembered back, long ago when he had become a medical doctor. He had been so sure of what he felt were strong ethics and values. A doctor was sworn to protect life, at all costs. Yet, why did he feel so guilty? There were ways he could have helped ease the man’s transition sooner. He had always been proud of the fact that he had never intervened before. This had been the first time in his almost thirty years as a doctor that he had felt he should do something.
Maybe because of the family? Was he afraid of a lawsuit? The family had threatened him with one enough times over the last weeks.
That poor woman, Kate. The doctor couldn’t help but be in awe of her devotion. She had been unwavering in her love and support. She had also been incredibly tolerant of a family that clearly showed up more for appearances than to offer actual help of any kind. He wondered how she had stayed for so long. Why hadn’t she put him in a nursing home years ago?
He recalled walking in the previous week, as Craig’s mother and siblings each took turns berating Kate for her stupidity and carelessness in not knowing more about Craig’s wishes. He noticed her head remained bent, never wavering or even acknowledging their existence. She just kept quietly brushing her hand across her husbands’ hair, leaning over and whispering in his ear. She had tolerated verbal abuse from his mother and sister almost every day since they had arrived in Hospice House.
They needed someone to blame. They needed someone to point their anger and grief towards, and Kate had always been the easiest target. They screamed at her and berated her for not showing enough emotion. Kate simply sat there, never saying a word in reply. The doctor finally made his presence known, and as politely as possible, asked them to leave. Kate looked up, with a look of relief and thanks shining in her eyes.
Shaking his head to erase the memory, he pulled his shoulders back, and gently knocked on the door. It was too late now. The patient would be gone soon and he would have done nothing to help. He pushed the feelings of guilt and sadness down to a place he could process later. Now was not the time to show those emotions.
He opened the door and halted in the doorway at the sight before him. His heart sank. He stood there for several minutes, just absorbing the scene before him. His face was wet with tears that were falling unnoticed, slowly he closed the door, turning the handle. He stood outside the door, his head bowed, as he felt a loss he hadn’t felt in years. He felt grief for a patient who had clearly been loved, and he felt sorrow for the wife who had loved a man so intensely and passionately… And he felt jealousy, because he would never know a love like that.
Kate was sitting on the hospital bed, with her husband pulled up to her chest. His head was laying on her shoulder. She was rocking him in her arms, and softly singing. She sang the song that had played at their wedding so long ago. As the song came to an end, she carefully laid him back down, supporting his head till it lay on the pillow. Placing her head on his chest, the tears finally came. The sobbing engulfed her body and all the years of despair, and sorrow, and pain came out. It was over.
He was gone…
There is no doubt that technology has changed the world we live in, and in very profound ways. There are treatments and procedures that save hundreds of lives every day, that a mere ten years ago would have left the patient with little to no hope for a fulfilling or long life. There are devices that allow those with disabilities to move with ease and to live the life that, thirty years ago, would never have been possible. We can communicate with family and friends, hundreds or even thousands of miles away. Now, we can even communicate with our loved ones, and see them, in real time, even though they could be on a different continent. I could keep listing all the wonderful ways technology and all its marvels has shaped our world today, but I think you get the idea.
I think we can all agree that technology has done really amazing things, and will continue to mold our civilization in ways that is utterly un-imaginable to us today. In the Information Age of the 21st century, we have never had more information at our fingertips…
…and we have never been more misinformed or misguided than ever before. Since the earliest of recorded history when people developed hieroglyphics to communicate with one another, to today in the year 2018 A.D., we are lonelier, and more disconnected with our families, friends and community than ever before.
I can tell you that there are times that I have to force myself to put my phone down. The urge to constantly check notifications, comments or likes is an addiction that I am not proud of. The stock holders of Apple and Google and every software or app developer should be ecstatic to learn that they have another addict willing to purchase their products.
My children are fast becoming addicts as well. My household now boasts three kindles, four smart phones, five laptops and several televisions. My television is also smarter than I am! At least, my children remind me of this, as they use it to scroll through Youtube videos, or to google information on! My home is also wired to turn lights off and on, ceiling fans are controlled, and our doorbell is controlled with the simple request spoken to “Alexa.” Soon, our doors will open, and our television will be controlled with our voice as well.
One of the perks of having all this technology is how I can communicate with people who are similar to myself. I can reach out to anyone who might be living a life with the same trials and heartaches that I am going through. It is comforting, and a bit overwhelming at the same time. You see, I belong to a unique community of people called, ALS Caregivers. I am married to a man who has ALS and I am also a mother of three of the most beautiful souls on this planet. Both of these situations are heart-wrenchingly beautiful to be a part of, and also incredibly difficult.
I no longer need a “Mommy and Me” Class to join, to feel as if I can find others who can help listen to my fears or who rejoices in my celebrations. Being a mother and a caregiver to someone who has a terminal illness can be a bit lonely. I doubt there is local ad in the newspaper asking people like me, to join their group. I know I can talk to my friends about what I am feeling or thinking, but it isn’t quite the same. I know that they are willing to listen, but it’s not the same as having others who “know and understand” the situations I deal with on a day-to-day basis. It is like trying to talk about childbirth to a woman who has no desire to have a baby. She may be willing to listen, but she will never understand what you went through, because she has never been in that situation.
When I need a place to go for advice, I often go online to my support groups and have private conversations about what is now my “new normal.” These are private conversations filled with laughter, and so many poop jokes, (there is a strong parallel between motherhood and caregiving) doctor visits, medical equipment, tricks for skin break down or foods that are easy to chew, and even the difficult conversations about loss and dying.
So why do I bring up the great invention of technology?
Because I have noticed a pattern among the conversations on my private support groups. Knowing someone with a terminal illness is uncomfortable. I completely understand how difficult that must be for someone to see someone they love, not look or sound the same as they remember them being. It must be hard to feel so completely helpless. I remember how shocking it is at first. I live it everyday, so the shock has worn off for me, but I remember, and I understand. What I don’t understand is how family members feel that they can send a text message, then assume that that is how to “show up” for their loved one.
Call me old-fashioned, but I think there may have been a day, not too long ago, where people would bring a dessert or a casserole dish, (in Minnesota, these are called “hot dishes” by the way!) and they would visit with their loved one. They would pick up a telephone, the kind that had a circular mouth piece and ear piece, and they were usually heavy and obnoxious, with a cord that stretched from the kitchen all the way to the living room, and they would talk. Sometimes, if they didn’t live within driving distance, they would take a piece of paper and a pen, and they would write a letter. Then, they would mail the letter and hope to receive one back!
I know this seems archaic to some, but these were just a few of the ways that people would connect with others…
So what happened?
When did we become a culture of people who are so self-absorbed, so wrapped up in our own little worlds, that we can’t take twenty or thirty minutes to stop by and visit? I am heartbroken to read of families that are bickering, or who are fighting over petty items or comments, while the person they love is dying. Feelings of fear and frustration are turned to ugly words thrown across social media pages, simply because they can, with no regard to how it might affect an already stressful situation. Family members refuse to offer help, instead, waiting to receive a text asking for help. And in return, they feel justified for their actions, because they have done their part…they sent a text, making trivial conversation, and hoping no one has picked up on the fact that they cannot actually “show up” for the person they love.
I feel even worse for the person who is dying, since they often will not say anything at all. These people are dying, and what happened to all those friends and family? No one visits, no one “shows up” and no one takes time out of their busy life to connect with these people who are dying. These people have little time left, yet they say nothing. Choosing instead to let others walk away, letting their friends and family stay in the comfort zone of playing pretend, letting the off the hook with a little comment here or there on a group text about nothing that pertains to them. The person dying is gracious, and will let family and friends talk about the easy stuff, like the weather, the sport of the season or upcoming television shows, just to put them at ease and let them think that everything is okay. They do this because they understand that it is easier for some to pretend, than to face the fear of their own mortality.
There are times when texting is convenient. I totally understand that! It is faster and more efficient. It is less time consuming. But be honest..as you read this, did you remember your grandparents, and think to yourself that you should probably call them? Did you think of a cousin who has fallen on hard times, or an Uncle who might enjoy sharing a piece of pie with you and maybe even a cup of coffee with. Did you feel regret at losing a loved one and wishing you would have taken just a few minutes to visit and connect with them, since you had no idea it was going to be the last time you would see them?
You are missing the best parts of life! And for what?
A text message?
(Disclaimer* While I no longer live in Minnesota, I have fond memories of many people there. I think the people there are so incredibly warm and inviting is because the winters are so long and bitterly cold, one has no choice but to enjoy a good conversation and strong cup of coffee!
And they are called “hot dishes!” not casseroles! and the people have funny accents, but big hearts!)
“I’m sorry, but you have ALS.”
This man who I had known such a short time was dying. He was my friend, and then my lover. I had known him less than two years. Our relationship was incredibly new, both of us not willing to jump into something so serious, so quickly. This was devastating and unexpected. And this changed everything.
I didn’t know what to do but I knew I wouldn’t leave him to go through this all alone. I promised to stay by him as he went through this. He would soon become my husband. Looking back, it all seemed so much easier in my mind than what the reality of ALS would bring into our lives. I wish there had been someone to sit me down and tell me what to expect, and what to do.
There are support groups, both in town and online. They were helpful, but somehow I would always leave feeling worse than when I walked in. The online support groups are helpful, but it was also incredibly overwhelming at first, as the people posting were much further along in the diagnosis then we were, and sometimes, I wasn’t ready to face what our reality would be.
Yes, I am saying “we.” I think by this time, I have that right. We are going through this together. I am right there, by his side, as he slowly deteriorates. As he has lost the use of his arms and legs, I am the one who has stepped up and become his limbs, his voice, and the person he turns to for help.
Becoming a caregiver is challenging and at times very difficult. It can be a very emotional time, as you are trying to care for someone else. The stress of having to learn new medical terms, find equipment, learn insurance jargon and paperwork, and numerous doctor’s appointments can be daunting. Depending on the speed of the disease, (each patient is different) some people find themselves struggling to keep up with all the new challenges. Many caregivers are forced to continue working and many are still raising families.
This was a completely new world to me. At the time of his diagnosis, I was 36 years old. The most I knew about how to care for someone else, was in raising my babies. A daunting task, but with each passing year, a child gains independence. I had never cared for someone who was sick. Becoming a caregiver to someone with ALS is not unlike caring for a child in some ways, someone who will become more child-like in his needs with each passing year. However, we grieve the losses now instead of rejoicing at the new accomplishments.
If I would have known then what I know now, I think I could have saved myself a lot of unnecessary stress. Now, when I meet with families that are dealing with many of the same issues, I give the advice I wish I would have known years ago.
I have met many caregivers and family members over the last few years who are now dealing with ALS as well. Like me, they too are overwhelmed and scared at what the future holds. I find that this role changes a person’s outlook on life. Many of the experiences I have had are similar to what they are now experiencing. I wanted to find a way to explain from a caregiver’s point of view, their needs that they are often too proud to ask for. Caregivers have pride and dignity. Sometimes, they are so proud, they want to ask for help, but find that they can’t. Other times, they fail to communicate their needs, and can’t understand why others can’t simply know what they need. They are sacrificing their own independence and goals and life dreams, while they care for someone else. They are also dealing with the fact that their loved one is dying and they are powerless to stop it. This is an extremely stressful time in their life, and there is no way of anticipating all the needs for both the patient and the caregiver, but I wanted to find a way to help others look for small ways they can help.
I have noticed that in the beginning, many people offer help, or they reach out and say that we should contact them if we want something. Please don’t expect us to ask for help. Often times, we can’t. It becomes a source of shame for us to have to ask for help on top of all the other things we do. We feel it is our responsibility, and we don’t want to burden others. Soon, the offers of help slowly fade, and so do the visitors.
Many people with ALS become lonely, as family and friends continue with their lives, with little to no contact from them. While phone calls and text messages are appreciated, so is stopping by and visiting. Each family is different. Maybe stopping in for a quick visit is a great idea to some, but to others, a phone call ahead of time to find a time that would be good for everyone would be better appreciated. Either way, don’t stop visiting. I understand it is difficult to see someone change, to look different, and to lose their ability to communicate or move, but I promise you, it is much more difficult to find yourself all alone because no one comes over to spend time with you anymore.
Below is a small list of ideas you can do to help someone you know who is a caregiver. Because by helping the caregiver, you are also showing your love and support to the person with the terminal illness.
Remember that the chances of you becoming a caregiver or patient at some point in your life are extremely likely. Maybe you will have to care for an aging parent, or a spouse who becomes ill. I hope that you never have to, but if you do, please remember to ask for what you need. There is no shame in asking, and being vulnerable to your own needs helps others to know what they can do to support you.
Showing empathy and support can make a world of difference for both the patient and the caregiver. If you are uncomfortable with helping, there are other ways to show your support. Just be sure to find ways to stay connected! A terminal illness is difficult for everyone, but it is important to realize that there are many ways to show your love.
If nothing else, share this. Maybe those you love will see it and it will remind them to step up and lend a hand!
Wishing you all a wonderful holiday season, with love and laughter,
“I haven’t talked to you in forever…how are you?”
I am pretty sure my voice is raised in that high-pitch sound I make when I am trying to sound more excited than I really am.
“Well, I’m here…”
I could tell by the way he was out of breath, he had been scrambling to find his phone. He’s upgraded past a flip phone, somewhere close to a smart phone, but that means little to an old man who cares little for technology. I doubt he knows how to use any of the features on the phone, except to swipe on or off and to answer incoming calls.
He seldom sounds happy to hear from me anymore.
I made this call, even though I had been dreading it. I haven’t spoken to the man I have called “dad” in almost two months. We seldom talk anymore. When we do, it is forced. Both of us not knowing how to get past the wall that somehow has been built between us.
I am calling him to invite him to our dedication ceremony tomorrow…knowing he won’t come. I am not sure why I feel compelled to invite him.
I want him to be proud of me?
I want him to give me just one compliment?
I am a glutton for punishment and rejection?
He laughs at the invitation.
“We are handing over the keys to the first family. The house is finished, and I thought you might want to see it now that it is finished.”
I feel my stomach flip and turn into knots again, knowing his answer before he even gets the words out. Somehow, I feel like a little girl again.
“No…no I don’t do people”
He pauses as he says this, as if this isn’t the same answer he gives every time I ask him if he would like to join us. If there is even a small chance of there being more than a few people around, he makes a fuss about how there are just too many people.
I feel that same rejected feeling that is becoming familiar every time we speak. It’s the same reason I don’t call anymore.
I try to persuade him again.
“I doubt there will be very many people there.”
There it is again. That damned high-pitch tone in my voice.
“I am not going anywhere. Besides, if I come, it will probably end up costing me money.”
This…this is the one thing I do understand about him.
It always come down to money with him. I am pretty sure this man was born on a budget.
How much will it cost?
Why would anyone spend money on that? or doing that? or for that?
How will someone take advantage of him this time?
Everyone is out to get him. Everything is a scam.
I try to convince him that no one wants his money. I even point out that I have never asked him for anything during this project, or for the foundation and I didn’t want him to come for his money. I just thought he might like to come and see what we’ve done.
He isn’t interested.
I tell him about the luncheon today and how our foundation has been nominated for an award. We were picked among numerous non-profit foundations across the state. He doesn’t seem impressed.
“I don’t understand your world.”
He says this in almost angry sigh. As if this is my fault for changing the status quo on him.
And that is really all it comes down to…
I disappointed him four years ago when I left my first husband. He has never forgiven me. I went and turned my entire world upside down. I didn’t ask permission, nor talk to him about it. I just did it. No one saw it coming, myself included. Sometimes I can’t even explain why I did it myself. But it doesn’t matter because he wouldn’t listen. He knows….or at least he assumes he does.
I quit working the job he thought I should be working. I wasn’t happy being a stay at home mom either. However, his opinion was that if I couldn’t make an insane amount of money, then I should be content being a good little wife and be at home with my children, waiting patiently for my husband to come home from his office, dinner on the table and house immaculately clean. Don’t forget to stay thin, look pretty and not complain. After all, I would never find another man who loved me as much. I should be happy with that life, right?
Who needs that? I didn’t need an education, and I was stupid for wanting one. I just needed to keep putting that money away, live as frugal as possible and stay away from all those scary people who only wanted my money and stay away from all the scams out there that sneak and steal that almighty dollar.
Imagine his surprise and frustration when I enrolled in school full time, left my husband and did everything he always told me not to.
Imagine his surprise when I found grants and scholarships to pay for my schooling.
Imagine his surprise when I introduced him to Matthew a year after I went through this midlife crisis of mine!
A man so unlike my first husband, in looks, lifestyle and life experience.
My dad would sulk about the first marriage ending, (I think he took pride in my marriage and he was disappointed in my divorce, although he will never admit it.)
Before I introduced him to Matthew, he told me I was just doing what every other woman does in her thirties. I just wanted to go “whore” around while my ex-husband played Mr. Mom. There was no use in trying to persuade or argue my side. There was no point in arguing that I had my children with me all the time even as I managed being a full-time student.
I wonder what he thought when I called and told him my boyfriend was just diagnosed with ALS?
After Matthew proposed, I called my dad and asked if he would like to spend the day with me. His response was, “What do you want?” He assumed I wanted money.
This would begin an entirely new way of communicating with someone whom I have loved so dearly most of my life.
This man picked up a broken widow, and a scrawny, half-starved, scared little nine-year old girl almost thirty years ago and helped them after a series of traumatic events. He would become a father figure to me, but most importantly, he was my friend. I relied on him. I used to call him almost every day! Never for money, but just to talk….about anything and everything! I idolized this man! I thought he was brilliant and I thought if I took his advice, and did what he said, then he would be proud of me. I tried so hard to do everything his way, to have his approval and love. Who knew that approval would come with so many strings.
The week before Matthew and I were to be married, I asked if he would like to go to lunch and visit. He came begrudgingly, and I knew he was more uncomfortable than ever before. That would be the day he would tell me that he probably would not be able to see me very much anymore. I hadn’t expected him to say that.
“I don’t do illness and I don’t do sickness.”
His last piece of advice that day, before I would marry a dying man was and I quote:
“make sure you don’t stop having sex, because that is really important.”
Trust me…I was just as shocked. That wasn’t exactly the sound advice I had been hoping for. There were no words of support. There was no hug, and assurance that I would get through this. I assumed maybe something along the lines of, “You will be stronger after all this, and you will be okay.” But you know what they say about people who assume…
I have only seen him a handful of times in the two years since my wedding day. Now each time I see him, it becomes more awkward than the last. He can’t understand how there are people who actually choose to volunteer their time, resources and money to help others. He thinks someone is going to take off with all the money, and it’s all a scam….
And seeing Matthew in a wheelchair makes him more and more uncomfortable.
But mostly, he can’t relate to me anymore…
And I can’t relate to him.
I hung up the phone.
I can’t help but wonder how he came to be the way he is. I don’t understand. These last couple of years have been absolutely inspirational and filled with some amazing stories and memories. It is an amazing feeling to know that we have helped others. We have taken a sad situation, and made some good from it.
I wish he could see that.
I wish he could be proud of me.
I wish he could see why I feel the need to try to help these families.
I wish he wasn’t so disappointed in me.
I wish I knew what to do or how to talk to a grumpy old recluse of a man who once was my whole world…
They filed off the bus, one by one. She stepped off the last step, several other children in tow behind her. Parents were lined up along the sidewalk, anxious to see their child after several days away. (I guess I can no longer use that word, “child.” She is clearly not a child anymore, yet she is not quite a teenager. She is in that “in-between” stage.)
I stood along with the other parents, glancing from kid to parents, most smiling and reaching out to hug each other. Some were tripping along the various sized bags thrown haphazardly along the way. Taking hundreds of sixth graders on a camping trip must be a huge undertaking, as it took multiple buses and adults to corral all of the luggage, back-packs, pillows and blankets, then several more buses to unload all of the tired kids.
I didn’t notice it at first. It wouldn’t be until the next night and into multiple days later that I would replay this scene in my head.
Do you do this?
Do you replay scenes over and over again? Dissecting each moment. Almost like a Sherlock Holmes episode, where I am Sherlock, (played by Benedict Cumberbatch, of course!) and I pause the frame…slowly walking around the scene, looking for clues.
There she is, walking towards me. She isn’t smiling her usual smile. I search her face, looking for signs as to whether she had a good time or had missed me like I had missed her.
I am that mother that gets up in the middle of the night, walking into each bedroom and placing my hand on my child’s chest, just to feel their heart beat. I will kiss their cheeks and breathe them in, just to have that second with them that will calm my fears on nights I can’t sleep. I am that mother that feels as if something is missing when one of my children are away overnight. So, I hadn’t slept well the two nights she was gone. I would lay in bed, feeling as if I was forgetting something.
To see her walking towards me would bring me relief that she was safe and home again. However…this time, as she is coming towards me, there is something different in her eyes and in the way she is carrying herself.
What is it?
She gives me a quick hug and walks over to grab her duffel bag and leave. She waves to a few friends, gives a half smile or a hug to a girl here or there and we jump in the car and leave. I replay this scene over and over for days, trying to place my finger on it.
Did I mention that I am now listening to Brene Brown? Actually, I have listened to two of her books on Audible now and I am convinced we should be best friends! Ok, she can’t have my best friend title. That title is already taken, but I am positive that if we ever met, we would be kindred spirits.
Stick with me, this will all come together by the end!
So, as I am walking on the treadmill a few days later, listening to one of my new best friends talk about the power of vulnerability, it hits me. Not like a “Eureka” kind of moment, but it was pretty close.
You see, my kindred spirit was talking about the armor we put around ourselves as we become adults. How we can’t be vulnerable or risk being hurt as adults, so we arm ourselves and protect ourselves, and in the process we lose our truth. (If you haven’t read the book, “The Power of Vulnerability,” I would highly recommend it. I had several “ah-ha” moments.)
My daughter went on that camping trip as a little eleven year old girl, excited and full of wonder. But when she stepped off that bus, I saw it. It was the first bit of armor she had placed around herself. I don’t know how I know, I just know. Call it “mother’s intuition” or just a hunch, but it is there. My daughter is slowly starting to wrap a shield around herself in order to not be hurt by others. She is learning to hide who she is to fit in, and to not be singled out among her peers. For obvious reasons, this is breaking my heart. I don’t want the world to force her to feel she must hide who she truly is in order to be accepted by others.
Can I remember when my oldest went through this?
No, not specifically. Then again, I wasn’t really as aware at the time. Or maybe I am more in tune with my children now than I was then? I don’t have the answer. I don’t know. But the more I think and dissect this moment, the more I am trying to remember back to other instances. When did my oldest start putting on her armor on? One scene comes to mind…
Mother’s Day – 2016
I was upset. The kind of upset where I am crying. No…not crying…I am sobbing. Gut-wrenching sobs that are shaking my body. I am sitting outside in the back yard, curled up in the chair, legs bent and head resting on my knees. I am crying because my feelings are hurt. I am crying because I feel tired and taken for-granted. I am crying because I am still coping with what it truly means to care for a dying man and balance motherhood at the same time. I am crying because I feel like a failure. And I am crying because of so many reasons, when my oldest comes out. She is crying because she sees me crying. She is reaching for me, trying to give me hug and to hold me. She cries out, “Mommy” in the saddest way.
Do you know what I do?
I do NOT let her comfort me or try to hold me. I push her away. Not violently, but still, I motion for her to go back. I am stuttering, and hiccuping and trying to get her to go inside and not see me this way.
I am ashamed…
I would eventually pull myself together.
For whatever reason, this scene and the scene when my middle daughter got off that bus the other day are linked together. I do even more Sherlock Holmes tactics and I am more ashamed of myself for pushing her away than ever before. How could I have done that? She was reaching out to me, and I didn’t allow it because I thought she would see me as weak. This is more heartbreaking to me now than I can explain. I have considered any sign of weakness in myself as shameful. Why do I allow vulnerability to be acceptable in others, yet I see it as my worst attribute?
I grew up with a mother who cried. She cried often and for various reasons. I hated it….So I stopped crying. In fact, I can count on one hand how many times I cried, beginning from the time my brother died when I was 9 years old to the time I met Matthew. (After his ALS diagnosis, I have lost count…a fact that has bothered me for quite some time.) How did I attribute crying to weakness and vulnerability?
My daughters are looking to me for answers and guidance. I don’t want them to push people away when they are hurt. I don’t want them to try to handle everything by themselves and degrade themselves when they can’t do it perfectly. How did I get to be like this? How do I stop my son from suiting up before he even starts? I don’t have an answer. All I can do is show them that vulnerability is not a bad thing. That feeling emotions is not shameful.
Pausing these scenes and evaluating them, and looking for ways I could have done something better is just one of the ways that I over-analyze and critique myself. I do this over and over again. I have done it for years. Please tell me I am not the only one who does this crazy sort of scene dissection? Where is the balance!? My almost best friend, kindred spirit failed to mention how to find that! How do I teach my children to stay vulnerable but not let the world hurt them? How do I learn how to take my own advice?
Will I ever get to the point in my life where I feel comfortable asking for help and not feel ashamed for it? I think that is one of the hardest parts in dealing with ALS for both the pALS and the caregiver. Learning how to ask for help, but feeling as if I have no right to burden others.
It is what holds me back from writing. I want to write about this experience and be honest about what it truly means to live and care for someone with ALS, yet I feel the need to protect those around us. I know Matthew feels the same way. We both feel like we are burdening those around us if we ask for help. We feel ashamed for asking. Then we feel bitterness and anger for wanting the help but not feeling as if we have the right to ask for it. And we both have the expectation that we should handle this perfectly…
It is a constant flushing toilet bowl of disappointment, and frustration and shame…
I guess playing Sherlock Holmes will be a good pastime in the coming days and weeks. I am going to have to continue analyzing when and where I was when I began layering my armor around myself. And I will have to learn how to take it off and be vulnerable once again. Because that is where to true beauty is.
Damn…I am beginning to hate that word.
What does a typical day look like for us?
Let me paint the picture…
I wish I could say we have a set routine, or some sort of structure on a daily basis, but with three children and multiple meetings and activities, children coming and going in different directions, it is basically a “crazy, chaotic hot mess!” I sometimes laugh at how different Matthew’s life became. ( No, I am not laughing about the ALS part!)
He went from a bachelor, living alone to having a wife and three children practically overnight! I am so incredibly thankful for his patience and his love for my children. And he’s a pretty good sport about all the childhood phases he has witnessed, (or been subjected too!) in the last couple of years!
So in case you were more than just a little curious, here is an example of what it is like to live our life with ALS…
Midnight to 6 am – Matthew wakes me on average 4 – 6 times to be adjusted. Often times I wake up to a muffled sound of “Hey hun…” Followed by a request to help him turn over, or lift the covers, use the restroom, or adjust his trilogy mask, use the remote to adjust the bed up or down, or to scratch in strategic places that could literally be anywhere. (Just let your imagination roam on that last one…) He doesn’t have the strength to lift the covers, let alone scratch even a little anymore, as his wrists are the weakest part of his body at this point.
Rolling him over consists of me sitting up, and shoving on his hip and shoulder to roll him over. He is a big guy and without the strength in his abs or hips, he can no longer roll over. Then his legs get left behind, so I need to re-position his feet.
At least 4 – 5 times a week he will need to use the restroom at sometime during the night. Gone are the days of him sitting up and walking into the bathroom by himself. Now, it is all me. I get up, roll him over so he is laying on his side facing me and then I use a hand held urinal and as he lays there, I hold the container as he goes….I am usually doing this with only one eye open. And yes, I have been peed on more than once. Who knew there was a trick to how a man urinates!
6 am – The kids are in school again, so I set my alarm. I need to be somewhat awake when they are. They are pretty self sufficient these days, but I still like to be up and spend at least a few minutes with each one. On a really good day, I might jump out of bed and hit the gym while everyone is still asleep, and knock one thing off my to-do list. If it was a bad night, I stay in bed scrolling through Facebook until I am forced to move!
I help make lunches, sign papers for the kids that they, of course, forgot about until the last minute, and I make breakfast for the kids who want it. Recently, with all this smoke in the air, I am chauffeuring my oldest more than usual.
However, I have three children in three different schools. So I end up taking two at one time, and find myself in my pajamas and hoping there is no one around to see me! Then I hurry back to get the third one out the door. Three car pool lanes, three chaotic arrivals and departures then hurry home, because I have more than likely left Matthew lying in bed.
9 am – I take Matthew’s trilogy mask off ( a machine that basically breathes for him, similar to a CPAP machine, only this one has air that moves in and out, simulating a breath.) I have to use our adjustable bed to sit him to a 45 degree angle, where I then move his legs over the edge of the bed, and pull him to a sitting position. Then I lower the bed back down, grab our Sit-to-Stand Hoyer lift, and maneuver the legs of the hoyer under the bed. I then wrap the bulky giant strap around his back and under his arms and buckle him in. On a good day, he can lift his legs onto the platform, but on a bad day, I have to lift his legs and position them onto the footrest. I then hit the remote button that lifts him into a standing position, and I wheel him over to his wheelchair, where I then slowly move him into a sitting position.
I am thankful that we are still able to move him around this way. The few times I have used a sling and a hoyer lift, it is a lot of work and much slower than even this process, so for now, I will be happy we are still using this method of transfers.
I then make his breakfast, cut up his food, get his drink with a straw and feed him if he needs it. Or clean up the kitchen and talk to him while he tries to get more food into his mouth than on the floor. We are generally sarcastic and we find things to laugh about throughout the day…
On a shower day, (every other day) we then repeat the process with the sit-to-stand, only this time, I get him from the wheelchair and lower him onto the shower chair, and wheel him into the shower. I scrub his body from head to toe, which isn’t easy when parts can’t move. I usually end up almost as wet as he is. I wheel him back out, and dry him off and attempt to get his shorts on him, use the sit-to-stand to pull him up, pull his shorts all the up and then set him back in the wheelchair. Shower time now takes me at least 75 minutes.
Then I clean and flush his feeding tube, and various other parts of his body, (have you ever cleaned someone else’s ears? EEEWWW!) I then have to pull those horrible compression socks on, (this usually takes me about 5 minutes a leg, however, lately, its been getting a little easier…) and if anyone has had the pleasure of stopping by, he refuses to wear a shirt unless we are going somewhere.
12 pm – If I have errands to run, I usually take this time to do that. Matthew will be either returning emails, or will put his headphones on while he watches his television shows. If our caregiver is here, he or she, (we have gone through over 40 of them now in less than 18 months!) will sit at the kitchen table waiting for us to ask them to do something…not unlike having a sullen teenager in the house. (This is because I refuse to ask someone to do something that I am capable of doing myself, and Matthew refuses to let the caregiver help with showering and bathroom needs, so they sit there waiting for instruction. So it isn’t all the caregiver’s fault! I just wish they could read my mind and do things to stay busy, instead of me flitting around them, while they watch!)
I will usually make Matthew’s lunch. If I don’t, he will either skip lunch completely or order Jimmy Johns or some other horrid fast food to be delivered (and he’s always thoughtful and makes sure to buy lunch for the caregiver as well…) You know, because we can’t ask anyone else to do anything and he is known for his love of fast food, lunch doesn’t get made unless I make it! ( I have, however, learned not to complain or point out his unhealthy eating habits. After all, if you knew you weren’t going to be able to eat solid foods in the near future, wouldn’t you eat whatever you wanted?)
Matthew needs to be stretched and he also gets a massage once a week to help with his muscle cramps as they atrophy. He also goes to physical therapy at the pool. (Mostly because he has a huge crush on his PT!) On those days, he needs to be loaded up and taken to the pool, or to various other doctor’s appts. or meetings that we may have for foundation work.
2:00 pm – I run out to pick up oldest daughter from the new program she is enrolled in.
2:45 pm – I run to the middle school to grab my middle daughter.
3:00 pm – I drive my oldest to her job twenty minutes away
3:45 pm – I pick up my youngest son from elementary school…if I am running late, I then scramble to text mother’s who can pick him up for me, and I pray they can!
5:00 pm Cross country, football practice, volleyball, wrestling, car pools, dinner, homework etc. These are just some of the variables. Somewhere between kid pick up and dinner time, Matthew will require a bathroom visit. This is where the sit-to-stand comes in again. We do that entire process again to get him on the toilet, and of course, we talk about poop every. single. day….
(He also loves to wait for me to put him on the toilet instead of the caregiver!)
7:30 pm – start getting kids calmed down for bed. Teeth brushed, tucking in each one individually can take at least two hours!
9:30 pm- Matthew isn’t tired yet and wants to keep watching one of his shows. I putter around on Facebook, or write. My Kindle hasn’t been holding a charge, so I haven’t been reading nearly as much.
At least one child needs something or wants me to tuck them back in. Afterwards, I make sure the house is locked up.
10:30 pm Matthew asks if I am ready for bed. He usually says it in a way that implies he has been waiting on me! So we brush teeth, use cough assist, and out comes the sit-to-stand one last time. By the end of the day, his legs are so weak, I only have a few seconds to move him from chair to bed. I put his trilogy mask on, and I lift his legs up onto the bed. ( This part is not easy, as he still has tree trunks for legs and they are heavy!)
I usually will scratch him all over because sitting in a chair all day is hard and he is itchy. Some nights, I rub his feet and rotate them to help with the swelling. Then I turn on his side of the electric blanket, plug his wheelchair in to charge and lay down…
11 pm -And this is where I remember I forgot to grab his remote to control the bed….so I get back up…
Lay back down but… he needs his pillows adjusted…So I get back up to do that…
Then he needs his head moved up or down, or legs put up…so I grab the remote to do that,,,
I play on my phone or read on my kindle till I can’t see out of both eyes anymore..and right when I turn the lights out…
He wants to roll over…
Disclaimer- The above description is simply that. A description of how our day goes on most days. It is not a complaint or a “please feel pity for me” type of description. This is simply an example of what our days look like. Some days are busier than others. Some days are better than others.
I am truly thankful for the help that I do get. I am thankful that we have a caregiver, no matter their qualifications. I am thankful that I am still able to chauffeur my children to their activities most of the time, no matter how challenging it is getting three children to all the places they want to be. I couldn’t imagine how difficult it would be to have to work full time and manage all of this everyday. I often look back and wonder how I worked part time and went to school full time on top of all of this!
I also remind myself quite often that we are not at the difficult stages yet. Yes, I know many people have it much more difficult than I do, and I am thankful for the place we are at today. Like a train going full speed ahead, I am fully aware what lies ahead for us. For now, when I am overwhelmed, I try very hard to remember that it is just a day. The next one will look better…or, like my previous post, my perspective will have shifted and the day won’t seem that bad after all!
After all, what’s in a day?!
P.S. I think I have used this picture before..but it is sooo relevant to my life!
Their lives are full of firsts!
First day in middle school..
First time trying something completely new… ( Like opening a locker in the hallway, with kids rushing and screaming all around you! Or being bused to a building full of strangers and hoping you will find a place to fit in!)
With each of these new experiences, they will gain wisdom and insight, and hopefully learn about themselves a little. However, the only way to gain perspective, is to live. Each experience gives us hindsight. And only time and life experiences can help us gain perspective. It cannot be taught, it has to be lived.
I am learning that my perspective with Matthew and our lives with ALS, and who I am and what I am willing to fight for, and my children, and my life, have completely changed, and I think will continue to do so as time goes by. Two weeks ago,for just a small moment, my perspective was,
“Poor me, I am all alone in this.”
I bitched and moaned and wailed about my hardships… (loudly, I might add!)
But then, a little time went by and I gained some perspective.
I learned, (which I have always known, but it is still nice to be reminded from time to time) that no matter what, it could always be worse.
I learned that as new challenges come my way, it makes me stronger. I learned that although this life of mine has not always been easy, each challenge has given me insight and perspective to fight the next battles that have come my way.
Matthew and I have a lot to be thankful for. Sometimes, I forget that. Sometimes, I get so wrapped up in all the expectations and priorities and demands on me, that I forget to simply be in the moment. I need to somehow remember that when I have days like I did a couple of weeks ago, that those days will pass. I will get through it. It is temporary.
I need to be grateful for where we are today. Because whenever I think this particular stage we are at is difficult, I only need to remember what it used to be like, how I felt then and how easily I was overwhelmed at the small changes that were the beginning stages of ALS. Now I know that I will find my new normal and we will make it work somehow. I know in the not too distant future, I will be wishing for things in our life to be as easy as they are right now. Do you know how I know that? Because there was a time I was overwhelmed just having to help Matthew dress and tie his shoes every day. Now, looking back, that part looks so easy now. That is because my perspective has changed on what I find to be difficult and what I find to be easy.
I think my perspective of friendship has also changed. I do have friends. My journey has led me to meet people from all over the country. I have lost touch with some, but others have popped in and out of my life at times when I need them the most. Each friend is unique in the gifts that they can offer me. They have been there to hear me vent, often times on more than one occasion. They have helped, or stepped up when I least expected it, and I need to remember that true friendships are not like those memes on Facebook. They are exactly like the friendships I have today. They are women who are busy with their own lives, and maybe their perspective is to be a good friend by sending a text, or by carpooling my children at the last minute when they can. Maybe its something as simple as standing next to me and laughing while we watch our children at practice. The point is, they are there and my perspective changed recently when I was suddenly more aware of them than ever before.
I can’t help but wonder how my children’s perspectives have changed over the last few days. Did they walk into school, scared, only to walk out and feel empowered for having made it through the day?
My oldest daughter who is 16 years old, has a lot on her shoulders these days. Today, she started her junior year of high school. On this day, she also started a new program that is similar to dual enrollment. She will attend high school for three hours a day, then be bused out to the new technical college for classes. She will be learning about resort and restaurant management, along with various other expectations of what it means to be an adult. She is doing this, at the same time she just started working her very first real paying job. She was more than just nervous today, she was scared. I have been trying especially hard to remind her over these last weeks of summer, that fear is often that which is unknown. Once we walk towards it, it is often less frightening.
My middle daughter began her first day of 6th grade today. She too,was more than just nervous today. She was scared. She remarked about the way her stomach was flipping and flopping. She worried about her clothes and her hair (a newly developing habit that I have never seen before) and she was scared about how she would get to each class on time.
My son started a new grade, with new faces and new expectations. He jumped right in, not really slowing down to take it all in but rushing past with excitement and fearlessness. He has the benefit of not having an all new school still. He is with old friends and comfortable surroundings.
Their perspectives are changing as they experience new things. I can’t help but be a little jealous of their carefree lives. I am still the person they lean on when things don’t go their way. I am still the person they come to when life is not so kind, when plans don’t go accordingly and when they are hurt. And I know that this will not always be the case.
I remember when they were younger. The frantic rush to get them all out the door, the hustle and bustle of small children and work and chaos. My perspective back then was,” I can’t wait for them to be older!”
Now…my perspective is different. They are older. And they need me less and less…and I wish they wouldn’t keep growing older. I wish I had enjoyed them more when they were younger.
These last couple of weeks, the word perspective has floated in and out of my thoughts almost daily. It has also helped me to reflect and gain wisdom. Life needs to be lived, hindsight needs to be learned and perspective needs to be gained if we are ever going to grow and develop.
I can’t even imagine how wise I will be soon…with all this newfound perspective!