he said, she said…

He said, “Wow! It’s nice to meet you!”

She said, “hello….”

He said, “We have a mutual friend.”

She said, “She invited me to come listen to the music with her.”

He said, “I am glad you could make it”

She said, “Thank you. I don’t get out often.”

He said, “Can I buy you a drink?”

She said, “no thank you”

He said, “Its been months, how are you?”

She said, “The summer went by too fast”

He said, “Can I buy you a drink this time?”

She said, “Sure, I would love a water!”

He said, “It’s loud in here”.

She said, “WHAT?”

He said, “Do you like live music?”

She said, “Yes, It’s my favorite!”

He said, “You came with her again?”

She said, “I’m her designated driver.”

He said, “Here is your water.”

She said, “Would you dance with me?”

He said, “yes”

She said, “You can DANCE!”

He said, “Wow, so can you!”

He said, “Will I see you again?”

She said, “Maybe…”

He said, “I haven’t seen you in weeks, where have you been?”

She said, “My life is complicated….

He said, “What do you do?”

She said, “I go to school”

He said, “would you like to go dancing?”

She said, “ok”

He said, “Are you seeing anyone?”

She said, “No…and I want to keep it that way!”

He said, “Why?”

She said, “I am recently separated.”

He said, “I was married for a long time too”

She said, “I have children”

He said, “I bet they are great!”

She said, “You aren’t my type”

He said, “I know, but can we keep dancing?”

She said, “Yes, I would like that…”

He said, “We have been dancing every month for almost a year now!”

She said, “I just want to be friends…”

He said, “I know…”

She said, “I’m not ready for a relationship.”

He said, “I understand. I am happy just being your friend.”

She said, “Thank you for being such a great friend to me”

He said, “Who are you here with?

She said, “I am here on a date tonight”

He said, “Do you like him?

She said, “I don’t know yet”

He said, “That guy shouldn’t be flirting with your friends”

She said, “I guess he wasn’t that into me”

He said, “He’s an idiot”

She said, “Thank you”

He said, “You deserve better!”

She said, “I agree..”

He said, “I like spending time with you”

She said, “I need to take things really slow”

He said, “Of course”

She said, “I think you are looking for more than I am ready to give.”

He said, “I have all the time in the world.”

She said, “What’s wrong with your fingers?”

He said, “Nothing, I am sure it’s nothing”

She said, “I am not ready”

He said, “I’ll wait.”

She said, “Please go to the doctor.”

He said, “Go to Cabo with me!”

She said, “I am a single mother, I can’t go to Mexico!”

He said, “It would mean so much to me!”

She said, “Will you go to the doctor?”

He said, “Of course, as soon as we get back!”

She said, “Its beautiful here!”

He said, “Thank you for coming with me.”

She said, “What did the doctor say?”

He said, “He wants to run some tests…”

She said, “It is going to be alright…”

 

He said, “I have ALS”

She said, “I know”

He said, “I’m scared.”

She said, “Me too”

He said, “Maybe you should leave?”

She said, “I promise I will stay”

He said, “Will you spend the rest of my life with me?”

She said, “Yes”

He said, “My legs are getting weaker…”

She said, “We need to find a new home”

He said, “I want to marry you and dance with you on our wedding day.”

She said, “There isn’t much time.”

He said, “I am sorry we are rushing things.”

She said, “I am sorry that the last time we danced was on our wedding day…”

He said, “I don’t want to use the wheelchair.”

She said, “It’s there when you are ready…”

He said, “I can’t lift my arms anymore.”

She said, “It’s okay, I am right here…”

He said, “Don’t worry, we are going to be alright…”

She said, “I don’t know how to ask for help”

He said, “Neither do I”

She said, “I don’t know if I can do this alone.”

He said, “I feel like a burden.”

She said, “You are not a burden.”

He said, “Happy Anniversary!”

She said, “It’s been 3 years?”

He said, “Its going by too fast”

She said, “I feel so alone”

He said, “So do I…“

She said, “I never get to go out or do anything anymore”

He said, “Neither do I”

She said, “I didn’t think it would be this hard”

He said, “Neither did I”

She said, “I miss being held.”

He said, “I miss touching you.”

She said, “Where did everybody go?

He said, “I don’t think they can handle this.”

She said, “I am so angry.”

He said, “I know.”

She said, “I had different expectations.”

He said, “I think it’s just you and I.”

She said, “You are my person.”

He said, “Thank God I have you.”

She said, “We still have so much to be thankful for…”

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The best of intentions….

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“Let me know if you need anything!”

This phrase is texted, said or otherwise conveyed to people of all sorts: to caregivers of all types, and to people who are either sick, going through a loss, or even to those who are going through life changes, (i.e. new births, moving etc)

This phrase is also one of the worst phrases that have ever been uttered, with the best of intentions, of course, to people around the world!

We rush about our day, see people we know and say these things in passing.  This phrase is like saying, “Hello, how are you?” (As the person continues walking away!)

It may be said with the best of intentions, but is in fact, the worst statement you could possibly say to someone!

Let me help you help someone else with ideas and tips for how to be truly helpful to those around you!

#1 SHOW UP!

Do not just send a text message with a well-meaning hello and then assume that they will ask if they need something. This places the burden on them, which isn’t fair!  Most people do not want to be a burden to anyone.  They will not want their ego or pride bruised by asking for favors and possibly have them turned down.

Show up! It is that simple.  Take some time out of your week and stop by.  Call them and ask them when a good time would be to come over for a visit.  Bring flowers, or some coffee or a beverage and spend time with this person.   (And please…put your damn phone down!!! Be present!  It may be uncomfortable to sit with someone who is sick but imagine how the person feels if you are constantly checking your phone!)

P.S. Do not offer to show up and cancel repeatedly either. It is rude and will make the person you are offering to visit feel not only like they are inconveniencing YOU but makes them feel as if they are not actually important, but that you are doing this to make yourself feel better!

#2 OFFER TANGIBLE THINGS!

Instead of offering something that is vague, offer something tangible.  Offer to bring over a meal that can be frozen for later. Offer to carpool the kids if it is already on your way. Offer to run some errands or pick up some groceries or to mow the yard. Offer to take their car to the car wash or vacuum it out for them. Offer something that you think you would appreciate if you were in their situation.

# 3 EMPATHIZE! DO NOT SYMPATHIZE!

Empathy is the ability to understand what another person is going through.  Take a moment to try to understand things from their perspective, and then offer something that you think you would appreciate if you were in that situation.

Sympathy is feeling sorry or pity for another. DO NOT do this.

There is a clear difference between the two.

#4 DO NOT JUDGE!

Many people do not ask for help when it is offered because they are worried about being judged!  If someone came over to my house right now, they would find some dishes in my sink, a stack of clothes on my dresser that I haven’t hung up yet (I absolutely hate laundry, it is my arch nemesis!) and they would find a messy garage, and who knows what else!

However, unless you live my life, you have absolutely no room to judge me! I have woken up 8 times in the middle of the night to adjust my husband. Three times, I had to physically get out of bed and sit him up, and remove his mask, etc etc.  I am often sleep deprived and there are many times that things around the house do not seem like a priority.  If a spotless house is your priority, great! But do not come over to my house and judge me for not taking care of your priorities. Come over because you really want to be with me or offer help. Making me feel judged will only lead to anxiety and more stress.

#5 EXPECT NOTHING IN RETURN!

So, you brought a meal over…Great!  Please don’t expect accolades posted on Facebook or a thank you card in return! If you are doing a gesture to be helpful, remember that it is a gesture that should be given out of friendship or love, not for your own ego or pride!

#6 TAKE THE KIDS!

Okay, this one is purely selfish on my part!  I have three children.  I have a terminally ill husband. While we still get out and about right now, I know that my children do not get to do as much as they used to.  We have to plan absolutely every detail now.  We have to plan showers, bathrooms, and medical equipment back up and battery charging. We have to plan wheelchair accessibility, and ease of travel.  We even have to plan for the weather, as my husband cannot handle extreme temperatures.

If someone offered to take my children along with them to a movie, or swimming or on a fun excursion, that would help alleviate my guilt.  I cannot always take them, and they are often left out of going to places because of this.

#7 BE AWARE THAT THINGS ARE DIFFERENT NOW

No matter what the circumstance is, whether it is a new baby, or an extreme life-altering situation, be aware that this person’s life will forever be different. This person’s routine will be different. The things they were once comfortable doing, may not be as easy to do.  They may not be able to communicate their frustrations or their new anxieties out of fear of judgement or ridicule.  Spending time doing what they used to do may not be as easy. Try to meet them half way.  Your invitations are appreciated, and just because they do not show anymore, doesn’t mean the friendship isn’t valued. It is just different.

Try to communicate how you can make their life easier, instead of expecting them to continue with the status quo!

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 “Let me know if you need anything.”

A phrase that is said with the best of intentions yet grates on my nerves.

Please don’t think I am unappreciative!

I am not!

But this simple phrase fills me with so much anxiety, causing so much stress and frustration. I will default with a smile, say “Thank You” and go about my day.

I am a caregiver, a wife, and a mother, among other things.  However, I cannot juggle it all, and I cannot ask for help!  My pride will not let me lean on others. I am not the only one who feels this way either. My husband is sick, and yet he is filled with dread asking for help as well. We understand how busy everyone else is. We also feel intense guilt if we feel we have added an extra burden to someone else. Hopefully these little tips have been helpful

If you want to be a part of someone’s life, you will make an effort. If you do not, you will make an excuse. It is really that simple…

How to say goodbye again…

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I wonder how they do it?

I wonder how doctors can look people in the eye, and tell them that they are going to die…

The doctor sits down and explains to the patient that they have ALS….and then what?

I know in the ALS community, there are teams of doctors and specialists and therapists who rotate into each room, greeting the newly diagnosed patient and their family member. Every doctor, specialist and therapist have a small window of time to discuss and answer questions, as well as take various measurements with various tools and devices.

These are referred to as an ALS Clinic.

These people are sent into the room to determine how much a patient has progressed.

These clinics are all over the country, the world in fact. And each one does exactly the same thing.

They diagnose…and then they chart the progression of the deadly disease known as Amyotrophic Lateral Sclerosis.

How do they cope with this loss repeatedly?

They meet a family, they get to know them, and they watch, helplessly from the side lines.

How do they find the strength to keep watching?

And they do this over and over with each patient they see.  They may not know when, but they know, just like a freight train that is headed straight towards them, and there is no way to jump out of the way, that death is headed for each of these patients.

Today, Matthew and I learned that we have lost another friend.

And just like that, he is gone.

I can picture his face perfectly. His eyes, and how they twinkled. His smile, and the way he grinned like a little boy with such a mischievous look in them.  I knew he loved his family. I knew he was a proud man, with an iron will and a stubborn streak t least a mile long.

I knew that he had progressed considerably since the last time I saw him.

I hadn’t seen him in months, but I knew.

Of course, I knew.

It was clear that he was struggling when I had seen him last. His shoulders were rising with each breath.  He hated the chair he was sitting in.  He visibly looked uncomfortable.  He hated being sick…

And from the short time I knew him, it was clear he was stubborn and would handle this disease his way.  I could relate to the frustration his wife felt about this.  It is hard to let someone else take the reins of their own life and yet , as the caregiver, be somewhat responsible for their health and welfare.

Matthew drinks Coke.  A lot of Coke..

He still chews tobacco…although now he has moved onto Copenhagen pouches to avoid the choking hazard of the tobacco grains going down the wrong way and causing pneumonia. But he still chews…

He eats too much fast food, and junk food, and he doesn’t care because he knows one day soon, there is a possibility that he will not be able to eat. So, my stubborn husband does as much as he wants to do, and I let him.

The man who passed was stubborn too…

He hated anything that made him weak, and he especially hated all the machines he relied on, and the medicines…and how weak he was becoming.

I am taking a huge liberty writing this, as I hadn’t gone over to visit him in so long.

I will forever feel sorry about that, and yet I hope they understood.

Matthew and I are on our own path of this destructive train wreck waiting to happen.  I know it’s coming, and so does he. Yet, we are still able to find happy moments and to experience joy and laughter. I need to keep my own happy for as long as possible. I am grasping with everything I have on some days…

The years keep going by, and the people we meet have come into our lives, and many have passed. Sometimes suddenly, and others, not so surprisingly.

And I am detaching from it all…

This doesn’t feel intentional, it’s a sort of survival mechanism for my heart.

I meet these families, and I fall in love with them.  And then I watch powerlessly as they struggle to find their new normal, and I am helpless to stop what is happening to them. And I become a bit angrier at each loss.

There are more people who have been diagnosed in our area recently.

Some have reached out to me, and this time, my wall is built.  I am a little less willing to rush into their worlds and learn all about them.  I am a little less willing to fall in love with their families, and then witness their anguish.  I hide behind the walls of our foundation. I stick to the facts.  I offer advice, but I pause before opening myself more.

Matthew is much the same.

This afternoon, he hid behind his screen.  He hid behind whatever would take his mind off what is happening.

The freight train is coming…

We can hear it.

We can’t see it yet. We still have time.  But the dread of what is coming is always there. It never quite goes away…It is dark and heavy, and we can do nothing but accept the path that we are on, and the journey we have been led to walk.

I wish his family peace.

I hope they find comfort in their memories of their time together…

And I hope they understand why I pulled away. Not because I wanted to, but because I needed to.

I am not always as strong as I like to think I am.

We are all cowards from time to time…

Goodbye friend☹

waves…

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It was breezy. The smell of the salty air teased her nose, as the wind moved through the hair that kept escaping from her clip, whipping her hair in disarray. She kept trying to secure her hair away from her face. Ready to give up on any hope of getting her hair under control, she quickly grasped her hair atop her head, pinning it on top. With one last pat, she began observing her clothes.

A black t-shirt and shorts that were ragged and well worn is all she had.  Still, she wiped her hands over her shirt, as if to iron out the wrinkles that the moisture from the sea had created.

She glanced down at her toes, wiggling in the sand. She lifted her toes upwards, trying to allow the cool water to rush in under them. When she lifted her feet up, the sand filled in, only to squish outward when she rooted her feet deeper into the earth.  The foam from the ocean lapped around her ankles as each wave slowly rocked in around her. She noticed how deep the sand felt. It was coarse, and she could feel a tug from the ocean as one wave retreated, before steeling herself against the small waves that were edging first close, then slowly retreating back where they had came from.

Her head turned, looking over her shoulders.  Each direction, she could see people standing along the beach. The sun was in her eyes, and she had to squint to see even those who were closest to her, standing along the sandy shoreline. They were all individuals, standing solitarily along the shore. She wanted to ask why but noticed that she herself was all alone. Her gaze lengthened further along the beach, noticing friends and family she recognized.

Her arm raised, waving frantically, as she smiled and called out to them.  Faster, her arm, outstretched, pumped from side to side.  Still, no one glanced her way.  She cupped her hands to her mouth and shouted.  Laughing, she bent over, her arms wrapping around her waist, giggling that she was alone, yet could see so many she knew and loved, but they could neither see nor hear her.

The smile on her face froze, as she realized that although there were so many she recognized and knew, some she even loved, she was all alone on this small area of beach and sand. Her head still turning from one shoulder, towards the other, she saw individuals, much like herself, standing and bracing against the waves.  Some were standing back up after having been knocked down by waves. Others appeared to be bracing for waves that seemed to engulf them.  She stood with bated breath, wondering how these waves were not hitting them all along the shoreline.

“Strange, I don’t see any waves near me.”

Again, the woman glanced out towards the horizon.  The darkening clouds were billowing and building upon each other.  She looked down at her feet, as another wave rocked against her legs.  This one forced her to take a step back, as she hadn’t been braced or ready for it.  She was still standing, and for that she was thankful.

She turned to walk away, but her legs wouldn’t carry her. Her heart raced. She realized that there was no turning away.  With some sort of invisible guidance, her body was held tightly facing forward.

She tried lifting her legs against the heavy sand, but each step only pulled her feet deeper and deeper into the wet, rough beach.  She saw the water pull away, and as her eyes raised in question, the wave hit her, knocking her to the ground.

Surprised at its strength and intensity, she looked for others to come help, but no one seemed to notice.  She stood up, this time, bruised and bit battered at the strength of the wave.

Again, she tried calling out to those around her for help. Why couldn’t they see her struggling?  Why did they leave her all alone?

Each person seemed to be fighting their own waves, some higher and some more gentle, only lapping at their ankles.  Again, she glanced out towards the horizon.

If a wave was going to come towards her again, this time she would be prepared.

She bent her knees, leaning heavily on her right leg, as she stepped her left foot backwards.  She would be ready this time.  Chin raised, shoulders back, she was ready for the water as it pulled further away, adding height to an already powerful wave coming towards her.

The sun forcing her to squint, she tried leaning in, as the wave came roaring towards her.  Her focus was intent, looking solely at what lay before her and this time, she refused to look beside her.  She knew she needed to brace against what was headed her way.

The wind in her face, blowing tendrils of hair across her forehead, stilled for just a moment. The mist moistened her face and arms, as she had closed her eyes, too scared to see what was coming towards her.

It was shocking how hard it hit. The air from her lungs was forced out on impact. The wave forcing her backwards. The water, now over her head swirled above her, and she kicked, lungs burning, as she tried to reach the surface for air.

She was sure her lungs would burst from the pressure building, and still she kicked harder and harder, hoping the surface was found just above her fingertips.

When she thought she could no longer hold on, the wave subsided, and she found herself once again, standing…toes wiggling in the sand.

Again, she glanced up.  The sun, that had just warmed her skin only moments before was over shadowed by dark clouds that were moving in.

Her eyes perused the horizon.  The clouds moved slowly towards her, ominously warning her. She wanted to run away, but she knew it was futile.  This storm was meant for her, and only her, and it was headed directly for her.

She watched the speed of the clouds moving. She tried to gauge how fast it was approaching, and she was also trying to prepare. She knew there would be no one to help her, she had long stopped expecting to find someone to lean on. She had no choice but to face what was coming, alone.

She could dig her heels in.  She could brace herself as best as possible, and plan for whatever may come…but in the end, it was up to her to decide if she would find the strength to beat this storm.

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I would like to take just a moment and explain this short story. This story has many metaphors, and I hoped they were easily discovered.  The inability to run away.  The waves are problems that we must all face alone on our journey through life.  Often, when we think we have support and help, when we look around, we find that, we are all alone.

This story is not necessarily a story about my hopes and dreams, it is something that I struggle with more and more as time marches on.  I know what is in my future. I know it looks bleak and sometimes terrifying.  I also am fully aware that this journey is mine, and mine alone.

I can only hope to make it through to the other side, without drowning from the sorrow of what life has chosen to throw in my path.  Maybe, although I cannot turn away from my path set before me, or the storm that is clearly coming my way, I can at least prepare for it, brace for it. Really, that is all any of us can do on this journey called “life.”

Exclusive Members Only…

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I am a member of a club that is unlike any other club you have ever heard of. It is one of those exclusive types. I say this with more of a shake of my head than with excitement. I have never really belonged in a group before. I am not sure I feel any urge to be in one again. I guess I should explain why.

I don’t really fit in, I never really have.  I wanted to be one of the cool kids in high school, but I always ended up just feeling like a loser.  I was never the athletic type.  Although, I was good at volleyball, my mother decided the one time she would parent me on any issues in my teenage years, it would be about this particular sport. She was too worried that the ball would hit me in the face while I had braces. She refused to sign the parental form saying that the high school would not be liable if something happened to me while playing sports or being transported to and from those games.

That meant that my freshman year I would not be playing any sports, and in an incredibly small town, there is only one way to stay out of trouble in high school.

Extracurricular Activities…AKA Sports

But my mother had put her foot down. That was my freshman year. So, I chose to get into trouble instead.  Again, I was a bit of a loser back then.

By the time my sophomore year came along, it was too late. My English teacher, Mr. Wheeler hated me, and he also just happened to be the girls’ high school volleyball coach. I had formed a fairly big chip on my shoulder by that time and walked around as if I could care less what people thought of me and I certainly wasn’t going to go out of my way to be some sort of jock. Teenage angst was in full bloom, along with a full disregard to authority. When tryouts for volleyball were in full commencement my sophomore year, I thought I would be brilliantly sly and smoke a cigarette in the dark room!  (Hey, don’t judge me.  There were several of us who smoked pot in that room almost daily, and Eve Stuckey, the small and fierce teacher who I could never quite figure out what she taught, never seemed to be bothered to use her authority in those moments. It was only when I decided to smoke a cigarette, that suddenly, I was the bad kid and needed detention!)  It also meant I had no chance in hell of making the volleyball team either.

Fast forward to adulthood. I have never worked a normal occupation, so I have no strong ties with any of my co-workers, in any of the states that I have lived in. Therefore, I don’t belong to any special groups of people there.  Needless to say, even as an adult, I have never really belonged anywhere or to any one group of people.

I am a mother, but I could never quite fit into mommy groups. I was either too happy (AKA to ditzy) , too young, too old, or too laid back about my children climbing trees and eating dirt.  I am divorced now, but I refuse to try to fit into that group. Nope, no groups, clubs or sororities for me. That was then…this is now.

When I think of those really cool clubs I would want to be a part of, I always think of sorority sisters, or fraternity brothers. Those people on campus who are impossibly sophisticated and elegant and can hold their liquor all while looking beautiful and composed. They wear their perfect little Abercrombie and Fitch sweaters, beautiful tan legs, and white teeth.  By the way, this is not the kind of club that I am a part of either.

Try not to imagine the golf course types. I am not classy enough to fit in with that kind of exclusive group. No, this club has no type of dress code or prerequisite to join.  You are automatically in the club once you meet one simply criteria.  It is literally that easy.

I didn’t know this club even existed. Yet somehow found myself as a member.  There was no initiation, no drinking goats blood or running around a campfire naked to prove my worth. Although, when I think about it, maybe I would have preferred having to prove my bravery or self-worth to be in this club. Then I would know I was in the right place.

I would have liked to have passed “the test,” and known that I would be a fitting match or been given a code name as a way of fitting in.  I certainly don’t remember having a friend refer me or that someone put in a good word for me. This club is incredibly selective, and few people are allowed in.  Yet, here I am.

Now….

Now I belong in a club! But not just any club. This is a type of club that has so many perks, I don’t even know where to begin. This club is unique in its membership.

I remember the day it all happened.  The man walked into the room.  I was so nervous. I had never seen him before, but I knew his type. He was kind and gentle and intelligent eyes. He was balding, and his glasses sat on the bridge of his nose. He was getting close to retirement, and one could almost tell he really didn’t want to be in the room with us.

I knew what he was going to say before he even said it, but I guess I was hoping for a different outcome.  He set his file down on the desk.  I was so focused on his shoes. As silly as that sounds, I couldn’t look him in the eye.  I stared at the sole of his shoes and wondered if they were real leather or the cheap version at Target.  Probably real.  I glanced up, gulped air in to my lungs as quietly as possible as I squeezed Matthew’s hand, and sat up straight.

No matter how hard you try, you will never be prepared to hear this. I thought if I looked on the internet and knew all about it, it would lessen the shock.

It didn’t.

I thought I could somehow prepare myself.

I couldn’t

“Matthew, I’m sorry to have to tell you this, but I believe you have ALS.”

 

I held his hand, and in that moment, I was immediately sworn in to the exclusive club. I just didn’t know it at the time.

I am his person.  I am his caregiver. Not just any caregiver. I am now in the club of people who care for someone with a terminal illness.

Not just any terminal illness, but ALS.

Amyotrophic Lateral Sclerosis.

A disease so devastating, that most people turn away with fear and trepidation when they see us coming.  Apparently, we make people a tad bit uncomfortable. But it’s okay. I’ve grown used to those people who lower their eyes and walk past. We are in a club that I hope they are never invited to be in. So, they can ignore us if it makes them feel better.

It has taken me a while to wrap my head around this drastic and sudden change in my life, but now, Matthew and I are a team.  Where I go, he goes.  We are a unit, a duo, a set, a pair.  I am his person, and he has become mine.

I belong to a Facebook support group. Again, this club is so exclusive, we even have our own online support groups.  I belong to a group for caregivers who are spouses.  I know what you are thinking? They have support groups online?

Yes!

Yes they do!

I get the pleasure of reading messages meant only for myself and the club members. Those of us who are in this club, we are there for each other. We support each other.  There is no judgement, no ridicule, only love and support.

Every day I read messages like this one:

“I know its been a while since I have posted, but I just want to tell everyone thank you for always being there for me when I needed to vent.  My husband, my hero, my PAL, is at the end of his journey.  He will be taking his last breath soon, and when he does, I don’t know if I feel comforted that he will no longer suffer, or if I am scared to be all alone.”

 Or like this:

“I JUST WENT OUTSIDE BY MYSELF AND I CRIED, I CRIED BIG CROCODILE TEARS, WHY , OH WHY , OH WHY …….!!!”

 

One of the more memorable posts recently was by a man who has had ALS for 30 years!  He decided he could no longer go on living. The stress of trying to find a caregiver to care for him, ways to manage money as well as his health, and maintain some semblance of a life, all by himself, with little to no help, and only his eyes left moving in his body to communicate, was simply too much. So, he went online, said his goodbyes, and had the tube in his throat he used to breathe with, removed.

He didn’t want pity, so I won’t dare give him any. The sad part was that he didn’t have a person. He had to be in the club with no partner…

Being in this club isn’t all sadness and death and tears. There are times we laugh, and funny moments we share with each other about being a caregiver.  We talk about poop….a lot! We comfort each other when one of our own has had to put their PAL on the toilet for the tenth time that day, or when their oxygen mask doesn’t fit properly and it takes 20 tries to make them happy. We rejoice when there are happy moments, and we cry when we feel helpless and too far away to be of much help. We all feel lonely at times.

Of course, many of us also get the added bonus of being caregivers while working full time, and/or raising children.  This club has a vast array of people, of all ages and life experiences.

And for some strange reason, this club seems to alienate all other family members.  It’s as if ALS is a great way to let all other family members off the hook.  They get to go on vacations, and play on the boat, and go dancing, while we, in our exclusive club, sit with our person, and we stay.

Yes, this is an exclusive club…

I pray you are never invited to join.

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The ending of a song…

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The music makes my body sway. The upturned faces, smiling, as they nod their head to the beat. Music fills the room, and the old, young and everyone in-between, are caught up in the moment, and their energy. Parents have their phones out, trying to video tape and take pictures in a darkly lit room. Grandparents are singing along, not bothering with capturing the moment on film, they are content to watch. Matthew and I had snuck in, half way through the show, standing along the edge of the auditorium, as there are no seats for those who have arrived late.
Finally, her choir comes on stage…
She is in the very back. ..the back of the stage where I can’t see but the tip of her head. The songs are sung back to back, with little to no break in-between. The singers are smiling, all wearing ridiculous renditions of what they think the 1970’s and 80’s styles were. I suppose a few of them aren’t too far off. Their dance moves are more for themselves than to show their skills, but they have pure joy on their faces.
I feel it.
I see it.
It engulfs me.
The audience has come to watch these children perform one last time.
I begin searching, reaching back into my memory. Was I every so carefree at that age? I can’t remember ever feeling like that, feeling so much joy? I must have, but it seems so foreign to me. I can’t remember my high school years being very happy ones. If anything, I was in such a hurry to get it over with. I often felt alone, as if I didn’t fit in. I suppose I often feel like that still.
Suddenly, I see my daughter’s face. It is lit up, blissfully radiant, as she has completely let herself fall into the rhythm and song.
When was the last time I saw her like that?
I am struck with fear and regret and shame and guilt. Every emotion comes rolling into me. She will be a senior in high school next year! But when I look at her, all I see is that sweet, innocent baby toddling down the pathway, her little pigtails, and her excitement at every new experience before her.
I can’t remember if I was ever so happy when I was her age, but I want to hold this moment for her. I want to tell her to lock it deep inside of her. To pull from it when she has lost her way. I want to hug her, and tell her that I will always love her, that I am so proud of the woman she is becoming.
I need time to slow down.
It’s going too fast! Please… I haven’t had enough time with her!
I haven’t gotten to enjoy who she is today yet!
I need to tell her how much she means to me, how much her laughter makes my heart burst with happiness and pride. I need her to know that I am harder on her, not just because she is the oldest, but because she has such naïve innocence, and such a trusting and open heart, that I am afraid that if she doesn’t learn fast enough, the world will swallow her up…and I am scared she will make choices out of fear, instead of searching for choices that suit exactly who she is, and who she will become. I simply want her prepared… because those were the choices I made. I was scared…and I was alone…and I didn’t know how wonderful the world could be…
I want her to know that I am here for her…even when she doesn’t do “life” the way I want her to. I want her to hold on to this moment..this exact feeling of freedom, and take it with her, to let it guide her on her way.

So many children, almost grown, all in the spot light, with their fresh faces and youthful innocence. I can see pieces of who they are, and who they are going to be. Some are so confident, yet others have no idea yet the strength they possess. The coming weeks, many of them will walk on stage again, this time to be handed a piece of paper that signifies the end of their childhood. They are rushing towards an unknown, and doing it with such excitement, I don’t have the heart to burst their bubble.
Each of them will fail.
They will fall again and again, and it will hurt. Most of them will stand back up, wipe the dirt off themselves, and take another step forward. The world is wide open for them, and their paths are unknown. I am excited for them… and I am scared for them. Mostly, I am scared, because this is the first time I have felt the intense sadness that this time next year, my daughter will be walking towards her own unknown.
I don’t understand. I am standing there, and I can remember being that exact age. Did I look like that? Did I have confidence, or was I simply placing a smile one my face, trying not to fall to pieces, as the world was suddenly larger than I thought, and there was no one I could fall back on when I failed.
Does my daughter smile, hiding her fears, trying to be brave…for me? Or for the world around her? Or both?
She gets that from me….because I am smiling as I sway along to the music. The song is almost over, as they begin slowly moving and bending, arms outreached, as they softly lower their voices and slow their tempo down. The song, “Stairway to Heaven” is almost over…and with it, the ending of a part of their childhood.

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…

Hey babe…

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Imagine….

Imagine laying on the bed, a small blanket covering you to your waist.  You try to pull it up, but it is too heavy.  Your hands can’t grasp the edge and pull.  You feel your arms getting colder. You lay there, forcing your eyes shut, trying to ignore the chill.

The blanket is warm against your legs, but it feels so far away.  Such a simple thing, to reach down and pull it up, and to snuggle back into the pillow.

Finally, you can’t take it anymore.

“Hey babe….Can you cover me up?”

They reach over, pulling the thin, electric blanket up, and the soft snoring can be heard again within minutes.

Soon, you wake again.  This time, as you are laying on your side, your hip begins to ache.  You need to move to your back.  You know that you have already woken the person beside you several times and its only been a couple hours.  You stare at the back of their head, see their body move ever so slightly with each breathe.  How long can you hold out?

Sleep is not coming.  Instead, your mind wanders.  Back to past memories.  Like a black and white sitcom, you play them over and over.  Remembering the smiles, and hugs from family members. The holidays.  All those firsts. Then it turns to the sadder times. You remember scenes from each moment as if they were on repeat.  The angry words thrown at loved ones, in anger and in pride.  Suddenly those moments that seemed so important, now seem trivial.

Your hip is throbbing.

Still, you refuse to move.  You try to make a deal with yourself.  You won’t call out until they move first.  Remember that game?  The one where you would stare and not blink first? Doing anything and everything not to blink or look away. You always won that game!  You can do it again.

Whoever moves first, loses.  Ignore the pain.  Ignore the tingling and sharp needle like pains running down into your leg.  You can win.  Just don’t think about it.

Tick..Tock….

Has it been an hour? It feels like it. You can’t take it anymore. You break.

“Hey babe…Can you roll me over?”

Damn…you lost.

They groan slightly, moving so slow. Please hurry…

Finally, they sit up, legs go over the edge of the bed, they stand. Why are they moving so slow?  Don’t they know how long you have laid there, in excruciating pain? Don’t they understand how long you held out?

The floor creaks, as their feet shuffle.

Finally, they come to the other side, taking the blanket off of you, and grab onto your legs and shoulders, to roll you.

Oh no…

Your bladder sends a message to your brain.

Quick!

Decide….now!

Do you have to pee or not?  Because they are up, and if you do and they lay down, you are going to have to hold it…

They turn to go lay back down.

“Hey babe?  I need to pee.”

You hear the feet stop.  You can tell they are irritated.  They turn, mumbling.  You don’t ask.  You can tell its not something you want to hear anyway.  The blanket gets whipped off, a little less gently this time.  They grab your leg and shoulder again, this time rolling you the opposite way, and if they aren’t steady, you’ll fall to the floor like a bag of potatoes. Something cold touches you. It’s the cold plastic as they press the urinal against you.

Damn.  It doesn’t just happen like that!

You need a few minutes.

Finally, right when you are sure their patience can’t possibly hold on much longer, you feel your bladder cooperate.

Several more minutes later, your pillow has been readjusted, your legs and arms are covered, and they lay down again.

You immediately feel guilty.  You know they have to get up soon. You lay there thinking about how much is happening for the day.  You know each day the work load gets heavier and heavier.  Your guilt builds. How much more can they handle?  How much more sleep deprivation and stress can they take.

You can feel your skin itch. You try to move your arm, but your hands aren’t strong enough and it only makes it worse.

You lay perfectly still, trying to breathe through it. Trying to think of another childhood game where you can’t move, you think of freeze tag.  Don’t move or you are out…

The back of your head itches.  That one is easy enough.  You shake your head from side to side, digging your head into the pillow.

Sweet relief for just a moment!

Damn!

Now the mask over your face has moved from your damn spastic head shaking.  Before you can decide if you should call for help, the alarm sounds next to you.

You look to your side, just in time to see them jump out of bed, running over.  Their face full of worry.

“Sorry babe, the mask needs adjusted..”

Their eyes go from worry to irritation.

They reach over, pushing the off button. Fiddling with the straps, they get it placed back on, and before they turn, you ask if you can lay on your side again.

With the finesse of a WWE wrestler, they quickly roll you to your side.  Adjusting your legs, and blankets and pillows, they stomp back to their side of the bed.

You lay still, trying not to make any more noise than you have to.

You wonder what time it is?  How much longer before you can have them get you up and put you in your wheelchair?  At least then, you can move a bit more. You hate being in bed.

You hear them snoring again.

How can they do that? How do they fall asleep so quickly? 

Then you remember. It’s been years of this. Every night.  Some nights are better than others, but every night, you wake them up.

Your mind wonders to Chinese torture practices. Is this how they do it?  Wake a person up every twenty minutes?  Can a person go crazy?

How long can a person go without sleep? You wonder if you are going crazy?

You giggle, because this isn’t funny, but it is either laugh or cry.

Then the giggle turns to a groan.  Okay, this definitely isn’t so funny anymore.

Your hip starts hurting again. You wait.  You really try to.  Until you can’t handle it anymore…

“Hey babe?…”

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…

 

**********