Nightly routines…

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It is the same process, every single night.

Mundane…sameness…always the same monotonous events that take place for bedtime.

  • Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
  • Wash his face, but only in certain spots. It makes him chilly to have his face damp.
  • Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
  • Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
  • One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
  • Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
  • Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
  • Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
  • Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs.  (The cough is weaker now. Nothing much ever comes out.  I can’t tell if I should be thankful for that or not.)
  • He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
  • Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night.  He gives me a pouty face, as I apologize…again.
  • My face turns red as I pull and twist the metal contraption over towards the bed.
  • Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.

Pay attention, Theresa!

  • Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it.  Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
  • Pull the straps and the sling out from under him.
  • He winces.
  • Place the bandaid over the bridge of his nose. It looks raw and sore again.
  • The mask goes on next. Hit the ON button. It screeches to life.
  • Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
  • Laying him slowly back, there is one more thing. Scratches…
  • Grab the baby powder by the night stand
  • Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
  • Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
  • Check for pressure sores. On the back of his legs and his buttocks.

I grunt again…I swear he is more square than he is round.

  • Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)

I give one more hard push…

  • “OWWW, I think you did something to my back!”

I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent

  • “I don’t think my legs work anymore!”
  • Then he giggles.
  • Rolling my eyes when I realize he was trying to be funny.
  • “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
  • “I’ll be right here!” He yells.
  • “Don’t move!” I yell back.
  • I shake my head with a little grin.
  • It is always the same thing…every single night.

It’s what we do.

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Today is the last day of November. It is also the last day to recognize caregivers. November is the designated month to celebrate the caregivers in our lives.

And much like what it can feel like to be a caregiver, the month went by with little recognition. And that is okay.

Most of us don’t do it for the praise, or the pat on the back. We certainly can’t say we do it for the money or the fame. We do this for someone we care about, someone we love.

But, for just a moment, I want to give you a peek inside the life of a caregiver.

• We get interrupted sleep, and we seldom (if ever) sleep a full 8 hours.

• We eat our meals last, or even standing up, in a rush to move onto the next check item on our to-do list

• We juggle so many things at once, we have a hard time focusing.

• We coordinate, organize or rearrange our schedule to take care of everyone else.

• Sometimes, we want to think of ourselves, but then feel guilty for it.

• We worry…all the time.

• We sometimes feel overwhelmed at the responsibility of caring for another.

• We have a rash of emotions that spread over us quickly, and yes, sometimes they might seem irrational. Don’t worry, the feelings dissipate quickly.

• Showers become the only private time we get to ourselves…

• We are the advocate, and the voice and the warrior for the person we care for.

• We have moments of selfishness, of wanting to not to have to think of, or put another person over ourselves all the time.

• We remember how much we love the person we are caring for, and somehow, all those emotions, and the weight of what we do seems less heavy for just a while.

• We often feel alone.

• We cry in the shower because the sound of the water washes our tears and drowns out our anguish.

• We smile through the irritations, or frustrations…and yes, even through the pain.

• We can’t imagine not trying so hard.

• We live with guilt over not being enough…every.single.day.

• We know that this role we play won’t last forever.

• We hate being told it’s not about us….

• We get irritated when others try to give us advice but have no real-life experience with the same situation.

• Seeing our loved one smile can make the frustrations and hardships more bearable.

• We would still make this choice, if it means just one more day with those we love.

Remember, you will either be a caregiver or need a caregiver at some point in your life.

If you know a caregiver, show some empathy and compassion. It’s a tough job.

If you need a caregiver, show some empathy and compassion, it’s a tough job!

 Matthew Wild

I grieve…

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The sound of his heel hitting the metal stopped me.  I looked down and noticed it just dangling there.

Every morning, I maneuver a sling around his body.  And every morning, I use a machine called a hoyer lift to lift him from the bed to the wheelchair.  And every morning, he wiggles and tries to adjusts himself in his chair to make himself more comfortable…

Except this time.

This time, he had to ask me to lift his foot up onto the foot plate.  This time, I noticed he couldn’t do it himself.

I suppose in some small way, it doesn’t seem like all that big of a deal, right?  I mean, it’s simply me bending down and lifting his foot to sit on a metal plate. I put both feet next to each other, and grab his blanket, and wrap it around his legs..

and I say, “Is your foot gone?”

It felt as if I had asked him if his appendage had died.  And I am…that is exactly what I am doing.  I am asking him if another part of his body had died..given out..become so weakened that he can no longer move it…And I couldn’t bare to look him in the eye as I asked this.  Instead, I fussed with straps and wires, and tucking in and lifting…I kept my eyes down and my hands busy.

“Yeah, I think its a goner!”

I look up and slap a smile on my face and I try to ignore the pain I feel deep in my chest.

And I grieve again.

I grieve for his losses, as well as my own.  I grieve every time, and I know its depressing. I know it is hard for others to look,

to watch,

to read,

to learn.

And I refuse to apologize for it!

Because I think everyone needs to know how strong this man is.  I think everyone needs to know how immensely humbled I am to see him live each day, with less and less ability to move, and needing more and more help with each and every task, yet he refuses to complain. He refuses to say, “Why me?” and he refuses to ask for more than he needs.

So…

To the person who posted this response on my Facebook page,

Jesus Theresa, why would you even post this?

If you read my blogs…

My response to you is this:

Because it is breaking my heart to watch this and be so completely helpless…

So I grieve…

every…day…

 

I forgive you…

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I forgive you.

It has taken me five years, but I can finally say these three words and truly mean them.

I forgive you.

It has been five excruciating years.  I have held on to this sadness and this rage for so long, I can’t remember what it’s like to look at you without feeling such grief.  Trust me, I have tried to move on, I have tried to let go, and still, there it is.

At first, I thought it was my fault. I thought I had done something to make you go away.  Maybe I said something? Maybe I didn’t say the right things?  I would lay awake, wondering how I could act better, do better, or say the right thing. Maybe I was too weak, and you couldn’t watch my struggles?

When he told you he was dying, you wrapped your arms around us both. We cried. We were all scared. He was dying. You wiped your tears away and looked at us both and promised you would be there for us.

You promised…

I don’t even know how it happened. It was so subtle. You were busy… Of course, you were.  You had to work, or you had obligations.  You always needed to be somewhere else.

At first, I made excuses for you. Because I knew there would be no way you would leave me to go through this alone.  I knew you cared. You were just busy.

But with every missed phone call, every text message left unanswered, you were in fact, telling me your truth.

You couldn’t handle it.

It’s okay now. I finally understand.  Every Facebook picture that showed you laughing, and smiling, each weekend out on the town.  The ski trips, the vacations…I saw them all.  I wanted to be happy for you.  I really did.  At first, I even made comments of how happy I was for you.  After all, you still needed to live your life. Sometimes, I would stare at those pictures…detesting you. You were so happy, and carefree…

You promised…

I stayed by his side.  I took him to every doctor’s appointment.  I kept notes, I kept files, and eventually, I kept sheets, organizing every medicine, every procedure and how to handle each situation, just in case you came back.  I wanted to show you what I was going through.  I needed you to see what WE were going through together. I needed you to see how overwhelming it was, the day-to-day routine of dying.

I began to hate you. Your text messages saying you would stop by with an old friend.  I would dress him and get him ready. He would pick out that shirt that he knew I couldn’t stand, the one with the holes.  But it was his favorite because YOU gave it to him. He would be so excited to see you. The excitement would slowly fade from his eyes when he realized you would be later than you said. He would wheel himself back into his bedroom, his shoulders slumped…hoping you were coming.

 

An hour…maybe two would go by before you would finally appear.  The knock on the door, and the loud jovial booming voice, the announcement that you had arrived.  Maybe you didn’t understand that we had nothing to do besides wait for you.  You would bring another friend, and it was clear you had been drinking, and having fun. Making plans to continue your carousing. We were just a quick stop on your way onto your next adventure.  And just like that, you would be gone again.  His smile would fade, and he would turn inside himself, wondering why you wouldn’t come around. I started to despise you.

You promised…

You promised I wouldn’t have to go through this alone. Where were you when he became weaker?  Where were you when I had to learn about suction machines, and oxygen rates?  Where were you when we discussed bolus feedings, and then gravity feedings?  Where were you when he was choking?  I would pound on his back and scream, as his face would turn purple.  I would be shaking, wondering if the ambulance could get there in time, or if I could help him breathe in time…Where were you?

You promised…

I would cry.  I never did that in front of him. I saved that for the times he couldn’t see me.  Standing, with the water running down my back, my hot tears matching the stream swirling through the drain. I would let myself cry, folding my arms around myself, and rock. Where were you when I need someone to wrap their arms around me and tell me I would be okay, that we would get through this? I needed someone to be there for me…

You promised…

We would try not to become too hopeful if we heard about a “breakthrough” or “new therapy.” We would try…I began loathing those who found optimism in every ALS walk, or those who rallied to raise money.  Why? What was the point?

I began hating Facebook.  Suddenly, ALS was everywhere, and everyone knew how to cure him.  Where were you when we would get article after article sent our way? Would you have demanded people stop sending snake oil cures? Would you have intervened when those well intention people mentioned traveling to Israel or South America for the latest Stem Cell Therapy? Would you have rolled your eyes with me, as we read yet another well-meaning person’s attempt to convince us he had Lymes? Disease, or it was simply a misdiagnosis?  Maybe others wanted to find some sliver of hope as well? I had lost mine long ago…

You promised…

Five years has come and gone.  Your visits were short, and few, maybe a handful of times. It must have been so uncomfortable for you to see him like that.  To see the tubes, and the skin hanging where muscles used to be. To not be able to hear his voice anymore. I know it bothered you when he lost his voice. I could see it on your face.  You kept trying to talk to him, but he could only grunt…and when his lips couldn’t contain the spit he could no longer swallow, it fell slowly from the edge of his mouth, onto the towel I always had placed under his chin.  I saw it then.  The look of panic in your eyes.

Did you finally see us? The exhaustion on both of our faces? Did you feel regret for not coming by more often, or did you just want to run away again, to escape looking at someone you claimed to love, to get away as fast as possible?  I wanted to run away too.  Did I ever tell you that?  I was scared, and I was so alone, and I had no one.

He had me though…

Because I promised him I would never leave him.

And I kept that promise…

At the funeral, when you tried to hug me, and I walked right past, I am sure it must have stung a little. I don’t think at the time I could have mustered up a fake smile. I have built my wall.  I no longer need you.  I handled everything, alone. I wonder if you regret that?

But I kept my promise.. 

Everyone told me. You know how small towns are.  They all had to make sure I understood what you were going through.  They told me how distraught you were that he was dying.  You were so sad, it was tearing you up from the inside.  They would shake their heads in pity, obviously so worried about how you would handle it.

But I have lived with a grief unlike anything you will ever understand.  I hope you never understand it.  I have also gained so much from this experience. You left, you chose to walk away when it became too difficult for you. But I chose him… I still choose him, even knowing everything I know now.  I still choose being right there by his side.  I made a promise and I kept it.  And for that, I have no regrets. I can now walk away, with my head held high, knowing I loved him and cared for him the best that I could.  I am tired. I want to close my eyes and find peace, and I cannot carry the burden of his disappointment in those who let him down. I do not want to feel grief or sadness anymore.  Not towards you, or him, or anyone else.

I forgive you…

Locked In…

LOCKED IN

A short story by:

Theresa Whitlock-Wild

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Part One

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.

9:00 pm

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.

Itch

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.

Yes

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.

10:15 pm

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.

11:30 pm

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.

Yes

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…

 

*****************************

 

Part 2

Eyes Closed…

 Day 1-

3:30 am

 Ting..ting..ting…

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.

7:00 am

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.

No fever.

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.

 

7:15 am

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.

10:00 am

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…

**********************

 Part 3

Hospice House

Day 14

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.

 

Day 17

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.

Day 18

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.

7:00 pm

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…

 

**********