Nightly routines…

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It is the same process, every single night.

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

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

Pay attention, Theresa!

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

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

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

I give one more hard push…

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

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

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

It’s what we do.

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

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

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

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

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

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

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

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

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

• We worry…all the time.

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

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

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

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

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

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

• We often feel alone.

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

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

• We can’t imagine not trying so hard.

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

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

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

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

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

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

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

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

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

 Matthew Wild

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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