and still, she persists…

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And still, she persists…

The buzzing of the alarm is heard off in the distance. Her children’s eyes grow large with worry.

“Hurry Mom, dad needs you!”

She rushes into the bedroom, grabbing the silicone wedge off the nightstand. As gently as possible, she pries his teeth open and off of his tongue. All the while, his eyes are burning in anger at her. She didn’t come fast enough. His face doesn’t move, but it doesn’t need to. She can see his frustration in his eyes.

After she fluffs his pillows and readjusts his body, seeing to all of his needs, she can hear the children in the kitchen.
Moving from one fire to another, she rushes out the door to see what the next emergency is.

And still, she persists…

They are crying. Looking up at her with tear-stained cheeks. They want to understand why their beloved pet had to die. Her heart breaks. Not because the cat was killed on the road in front of their house, but because she knows that soon, these faces will be searching for an answer as to why their father had to die. Will she have the right words or be able to comfort them when that time comes?

And still, she persists…

Her eyes are bloodshot. Its after 2 am and finally, the dishes are put away. Her husband is sleeping, the children are tucked in and safe. She remembers that the only food she has had all day are the few bites from a package of crackers her baby had nibbled on, and the constant flow of Zipp Fizz, the only source of caffeine that keeps her moving.

She pours herself a bowl of cereal. Stifling a yawn. Her head heavy with exhaustion. She can’t remember when the last time was that she showered. She contemplates skipping her only meal of the day to take a hot shower, but her stomach is growling, her head is pounding, and she needs to lay down soon. The kids will need her in the morning as they get ready for school. Four blessed hours of sleep, if she is lucky.

And still, she persists…

Pulling and twisting his lifeless and limp body, she maneuvers him to an upright position. Trying hard to avoid pulling the hose that is attached to the mask, that is attached to his face; she uses all of her strength to pull him up and over to the wheelchair. The bedroom is small. So little room to guide the chair around. The bathroom, even smaller and more difficult.

The sweat beads along her brow.

She grunts, using her back, her arms and her legs to pick him up and place him on the toilet. Trying to maintain his dignity, she wrestles with his body, and the damnable hose. Wishing he could remove it for just a moment but knowing that his body no longer takes in air without its assistance. Trying to find a different solution, but knowing he will simply refuse her suggestions, she lifts once again, and repeats the entire process.

And still, she persists…

The voice is monotonous, but it doesn’t matter. She knows him well enough to know that he is angry. He is always angry. He hates this disease. He hates how he feels cheated. He wanted to do so much in this lifetime. It isn’t fair.
He takes out his anger on her. He uses words like a killer wields a knife. Piercing her heart with razor sharp words. He places the blame on her. He points his frustrations out on her. As if she were the reason he was diagnosed with ALS. As if it is her fault that the doctors never took his symptoms seriously. As if it were her responsibility to keep him happy and healthy, and she has failed him once again.

And still, she persists…

Was there a time when they were happy? She can’t seem to recall anymore. She can recall their wedding. She married a man, who was still so much a child in his inexperience, and his desires. Wanting to please him, she put her dreams on hold. Knowing that to make a marriage work, there had to be sacrifices that needed to be made. She never saw that she was always the one making the adjustments, in order to keep the peace, and because she loved him with every fiber of her being. Now, there is anger. She looks for the happy memories. The flashes of happiness, Traveling and exploring, his excitement with every new toy: a gun, a four-wheeler, or even the snowmobile. He was happy when he was out doing things…anything. Now, he lays in his bed, staring at a screen, pushing the world further and further away. She tries to show her love, with a caress, a smile. But still, he pushes her away. Every day, she tries again. Hoping this day will be different, and he will see how much she loves him, regardless of the disease that has ravaged his body…and stolen his happiness.

And still, she persists…

ALS has taken so much from them both, and yet she still searches for joy and gratitude in her day-to-day routine. She is exhausted but smiles when her children are excited in their adventures and discoveries. Her children are happy, and even though their father is bed-ridden, she continues to create a lifetime of happy memories. She manages to keep them occupied and distracted from the world that is just down the hallway from them. She hugs their hurts and washes away their fears. She carries a heavy load, but you will never hear her complain.
Her smile would break your heart if you understood what kind of sorrow and sadness she hides from the world.
Someday, she knows her life will look different. Someday, she will no longer be a caregiver to a man who cannot find beauty in his small world. She tries to encourage him and to remind him that there is still joy to be found, but he pushes her away.

And still, she persists…

Someday soon, she will have to look for a new routine, and find new dreams to dream. Hard work doesn’t scare her. In fact, she looks forward to the day when she can leave the walls of the house she is trapped in, and to have goals and aspirations once again. She catches herself feeling the familiar twang of guilt when she imagines the life she might have after…She stops herself just short of going too far in her daydreaming…knowing what that means for her husband.

And still, she persists…

She is the strongest person I have ever met. Her heart is pure, and she is beautiful, both inside and out. She doesn’t realize her strength, and she can’t see her potential. But someday, she will look back on these moments and realize that she accomplished more than most people will in a lifetime.

Long after the ALS memories and painful struggles associated with the disease have subsided…only then will she see what I have seen all along. No matter what life throws her way, I know that she will continue to do remarkable things. Her children will one day understand her sacrifices, and they too, will stand in awe of the strength of their incredible mother.

And hopefully one day, when they are grown and living lives of their own, they will know their own strength because of one woman who continued to push and fight for them, regardless of the incredible task set before her. Until then, she continues to get up, weary and almost to the breaking point.

And still, she persists…

 Matthew Wild

 

dinnertime…

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It’s my favorite part of the day.

The evening is winding down.  Books are scattered across the table as my studious child is bent over a book, brow furrowed in concentration. The other one is running in and out, doors slamming, as he tries to sneak past me once again. The dogs are watching, waiting for a small morsel to drop. I am laughing as I try swatting at my son to stay out of the pantry. He rushes just out of reach, a triumphant smile across his face.

It’s almost time for dinner.

The sound of onions and mushrooms sautéing in the pan. Fluid motions of chopping, the rhythmic sound of the knife slicing and dicing. With the flick of a wrist, the food is absorbing the heat and sizzle and beginning to meld into a meal. The smells are wafting into the house, and the sounds of laughter are mingling with the sounds of footsteps. My children are gathering around the table. Dinner is almost ready.

Matthew sits patiently, quietly. His chair turned towards me.  He loves to watch me cook. I know this about him.

Even on days when I barely have the energy to move, if my children are gathered around the table and I am cooking, I am in my happy place.

It was a subtle sound.  I didn’t even hear it at first.

As I am setting the table, my back is turned as I am dishing up pasta into a serving bowl.  My focus on gathering everything to take to the table.

There it is again.

I glance up, twisting my neck to see behind me.

Matthew’s face is red. His eyes are bulging.

He is sputtering.

Kaden and Peyton’s eyes widen.

My son jumps up.

Matt, are you ok?”  I can hear the panic in his little voice.

I set everything in my arms down, but Kaden is already rushing off towards the bedroom. Peyton is standing up out of her chair, unsure of what she can do to help.  I am walking quickly towards the bedroom, ready to grab the machine if Kaden is struggling.

Matthews face has gone from red to purple. He is trying to cough, but there is no sound.  A small wheezing gasp is all that can be heard.

Kaden comes running towards me, cough assist in hand. I can see the look of terror on his face as he glances from Matthew to me.

I smile, trying to reassure him that Matthew will be fine.

I press the “on” button, balancing the machine against my thigh, as I juggle the hose and mouthpiece.  It is taking forever to switch on.  I slowly count to three out loud. More for Matthew’s sake, to help him to remain calm and that he will be able to breathe again soon, than for myself.

One….Two…Three

Finally, the “swoosh” sound begins, indicating it is ready.

Matthew leans towards me, pushing his face into the plastic covering that encompasses his nose and mouth. The familiar sound as the machine forces the air in…then out fills the air.

After several deep breathes, Matthew leans back into his chair, relief across his features.  His face is still red. Tears streaming down his cheeks.  Snot dripping from his nose.

I set the machine down, grab a rag and begin to clean him.

This is automatic.  This is not the first time he has choked on his own spit….and it will not be the last.

I glance at my children, frozen in place. I give Peyton an encouraging glance and ask her to keep telling me about her day. Looks of terror on their little faces slowly dissipate and I can see their chest begin to rise.  They are only now realizing that they were holding their breathe.

And just like that, life returns to normal.

Our normal.

“So” I say, “What was the best part of your day?”

When angels have to leave…

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“Mama passed away”
 
It’s six am, and I am eight hours away from home. This is the text message I wake up to. I set down my phone and lay there.
The hotel room is modern, with sharp edges and a cold surface. It seems colder now.
I turn my head. Laying next to me is my baby boy. He is not so little anymore, but when he sleeps, he still reminds me of the baby I held all those years ago. His little upturned nose, long dark lashes laying across his sweet face. His mouth is open slightly, and his hand is near mine. I reach over and gently touch his cheek.
 
She is gone.
 
The thought seems foreign to me for a moment.
 
I didn’t get a chance to say goodbye.
I had seen her the month before, but it was a whirlwind of people and activity, so visiting with her was short. Matthew said she was having difficulty breathing, but I still refused to accept that she could be close to the end.
 
I quietly rolled over to glance at Matthew.
He is laying in his wheelchair, pillows tucked around him. Blankets piled on top of him. Not much is seen except his head poking through. His mask moving in and out with each breath the machine pumps into him.
 
How will he take this news? A tear slides down my cheek, and I flash through the memories of when I had first met her and her family. So many smiles, so much laughter, even in the painful moments.
 
Anticipatory grief is knowing what is coming, being helpless to stop it, yet still feeling the heart break, even after you have prepared for it.
 
This time is no different.
 
I knew she was in Hospice. I knew she was tired of fighting. She was in pain. She was hurting. And selfishly, I wish she would have held on.
 
She was so loved by so many. A mother to many, and a woman who was known for her friendship as much as for hard work ethic, her love of family, and her laugh. Her sweet and caring nature was easy to love.
 
I doubt I will ever be immune to the sting of hearing when someone has passed. I have seen it almost daily on Facebook for years now, another angel has gotten their wings from this disease called ALS. This may be why I don’t visit the support groups anymore. I meet them, grow to love them, only to lose them.
 
This family is another one I have come to know and love, and it makes the loss that much harder.
 
I had the honor and the privilege of watching a family come together during chaos and sadness and hold each other up.
To say I was jealous would be an understatement.
The strength this family possesses, and the love they have for one another has been inspiring to watch.
I witnessed a man, weary and worn down, still get up every day. Even at times where he probably felt he couldn’t muster up the strength to continue, they circled around him, supporting him, so that he could care for her in her last years. Eyes that hold pain, but shoulders that continued to carry the burden and grief of it all.
 
Her daughters cared for her with comforting hands, helping with showering and dressing. But more than, they were pillars during times when the disease became too emotional for her to hold in. They allowed her her tears and her grief, so that she could show a courageous face outside the walls of their home. Grandchildren that wanted to be with her all the time, no matter that towards the end, there was a constant reminder of her illness wrapped across her face to help her breath.
 
I am not naïve to think they did this perfectly. There is no perfect. And there is no right or wrong way to deal with a diagnosis like this. But if I could look to a family who handled this with grace, support and love…this family came together during the most difficult of times and I am in awe of their strength and determination to walk this journey together, side by side. I wonder if they know how truly lucky they are to have each other. So many other families are torn apart, but this family seemed to huddle even tighter together.
 
I can’t help but hurt for her family now. This woman was giving and kind. She wanted to support others as they traveled the same road she was on. She wanted to lend comfort and wisdom and she wasn’t shy in schooling those about the ins and outs of ALS.
I have no doubt that those who walked away, or lost touch with her after those three letters consumed her life will have guilt. Somehow, I just know she wouldn’t want that though. She has found peace. She is no longer trapped inside a body that refuses to move, and the pain is gone.
 
I lay there for a while longer, staring at Matthew. Do I tell him? Or do I wait?
He must feel me staring at him because he turns his head and opens his eyes. I begin the process of hitting buttons to move wheelchair plates down, and seat positions up, and more buttons for machines that I still hate, the beeping always so loud in my ear.
 
I sit next to him on the bed.
 
“Kathy passed away last night.”
 
Matthew winces. We are both silent. What more can be said? Our eyes fill with tears, but no words are spoken.
 
Our drive home that day was filled with quiet solitude. There is nothing else that can be done. And that is the hardest part of all.
 
And our hearts are broken once again…

slowly, they all just disappeared…

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You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.

Slowly, so slowly at first, it seemed almost as if you might be imagining it all.

First, the words of condolences.

“I am so sorry you are going through this.”

“I heard about the diagnosis. I am so sorry.”

Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.

It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.

The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.

You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.

You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.

The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.

You do everything in your power not to click on that icon, you try so hard to stay away from social media.

You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.

You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.

The connection is gone.

Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.

The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.

You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.

If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.

You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.

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.

sorry you had to see that…

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I’m sorry you had to see me like that today.

I try to keep that side of me hidden from the rest of the world. Well, except Matthew. He has seen it a few times. If only I had known you were going to walk in, I would have pulled it together before you saw me. You seemed shocked to see me like that.

Sorry.

It doesn’t happen all the time. Well, actually, that’s not true… it seems to be happening more frequently lately. Maybe it’s the holidays? Maybe it’s my birthday that is fast approaching? Maybe it is all the what if’s, the why’s, or the somedays….Trust me, if I could figure out how to get it under control, I would. I would do anything to numb this…to make it stop…I wish I could make it go away.

I wish I could describe what it is like. It is so strange, especially in the moment. One minute, life is fine and then, before I know it, I am just so angry.  I didn’t mean to let it happen. Sometimes these emotions just seem to overpower me.

Today though…today was different.

I was so tired this morning.

I just wanted to sleep.  Matthew wanted to sit up.  It wasn’t even 6 o’clock in the morning. Then I remembered…the house was a mess and my list of to-do’s is piling higher and higher.  I know, I know…I will always have so much to do, but today….today, it just seemed overwhelming.  My wrists and hands were already aching..and I remembered that it’s a “Shower Day.”

Matthew wants to sits up, but less than ten minutes later, he wants to go back to sleep. I am sorry. I know I shouldn’t be complaining. After all, I can still sit up. He can’t.

I know. This isn’t about me. I am not the one dying….There is no reason for me to be so irritated, right?

Sometimes, with every little need, from him…from my children…from everyone around me, I feel selfish for wanting something for myself. I want to ask what happens to me when I need something? What then?  But I shouldn’t think like that…should I?

I am the one who must get up, take his mask off…then wait till he decides if he wants to go back to sleep or not.

I am the one who has to reach for the cup to give him a drink.

I am the one picks him up and transfers him.

I am the one who helps him use the bathroom.

I am the one who feeds him.

I am the one who covers him when he is cold.

I am the one…

Today wasn’t any different than yesterday. And it won’t be any different than tomorrow.

But today, with each little need, and want or request, and with each thought of what I should get done: the shopping, the cleaning, the errands, the bills, the appointments, the kids, the animals, the cooking, the showering, rearranging the garage, finish the Christmas decorations, the homework….

It just seemed like so much.

And I snapped..

I never said a word. No outward reaction could be seen. But inside, I was seething.

I became so angry.

So angry, that if someone had said something to me in that exact moment…I could see myself going insane!

There was a big possibility that would have seen my face splashed across the newspapers, “Caregiver and wife of man with ALS has gone BESERK! Aggravated Assault and Battery Charges have been filed!”

I laid there, trying to force myself back to sleep. But soon the kids were running through the house, the doors were slamming,.the footsteps were stomping…and then with a quick kiss, they were gone.

Too quiet. Too easy to think, to remember, to analyze, to contemplate, and then over-react.

What was it my therapist told me?

“Anger is really just a mask for sadness and fear. It’s easier and more powerful to feel anger. Imagine when you finally admit what you are really feeling.”

I check with myself.

Yep, that is a whole lotta anger, ready to come pouring out of every cell in my body.

Instead of the rush of endorphins…the rage…instead, I realize…he is right.

I am not angry…I am sad

I am so unbelievably sad, and scared.

And just like that…I begin to cry.

I fall into a million pieces.

I am sorry that you walked in during the part where I was trying to put myself back together.

That probably wasn’t a pretty sight for anyone to have to witness.

It’s okay though.

I spent the day gluing all those cracks and crevices together.

I can’t say that I am back to my usual self.  There were a lot of pieces today.

And I can’t say I am going to sit in the emotion of sadness anytime soon. Apparently, that is a powerful emotion.

Instead, I turned it back into anger.

Anger I can manage.

Anger I can control.

Anyway, I just wanted to tell you I am sorry.  I hate when someone sees that side of me. It feels far too vulnerable, and too much to have to burden someone else with. And I just wanted to apologize for bothering you…

Let’s just pretend this never happened…what do you say?

 

❤ Matthew Wild