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.
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
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.
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!
The dealer looks to each player at his table. Shuffling, he asks for their ante. The sound of the chips as they bounce in a pile is all the indication the dealer needs. He shuffles…eyeing each player as he slides the cards along the felt table top.
The players duck their heads low. Holding their hands over the top of their cards, they peek at what has been dealt to them.
Some of them silently groan.
Their cards don’t offer much. They will have to discard many of their cards, and hope for something better.
Other players are inwardly giddy. Their hands are set. It won’t take much to win.
Each player discards a portion of their hand. Looking across at each other, some for the first time, they take in what each player is doing. Looking for each other to show emotion, a tick, a nervous twitch, anything to show or tell them what hand the other person has, as the dealer gracefully pulls the discarded pile away, and swiftly thumbs the new cards.
The players shift in their seats.
Some players had poor hands, but the newest cards have given them an advantage.
Some players had a fairly decent hand but would have preferred a better one.
Others, hanging their heads in shame, they throw their cards down with a heavy sigh…not willing to bet, or even try to bluff for a win.
The dealer raises his eyebrows.
Who will raise the stakes? Who will show their “tell” and give it all away by a twinge of their mouth or a tap of a finger?
Most players throw a few chips in.
Not a word is said.
The tension is building. Spectators have crowded around the table. Not brave enough to join in but enthralled with the daring and recklessness that these players have.
It is time for the reveal.
Who will win?
One woman holds a pair of nines.
An older gentleman, he had bet everything he had left…on his straight.
It was the young man though. The one who had been quiet and unobtrusive the entire time. He was holding a Royal Flush, yet to everyone’s surprise, he didn’t gloat. He stood, accepting the round of applause for his strategy and discipline. He then, walked away, leaving all his chips on the table.
A young woman, her eyes bright and sharp, chased after him. She yelled, “Sir, you forgot all the money you won!”
He turned back, and said, “It was never about winning. It was simply for the joy of playing.”
Which player are you?
How are you playing the cards you have been dealt? Sure, you could hand in a few cards and hope for a better hand. But if you can’t find happiness and the thrill of living in what you have, what makes you think you can with an entirely different hand.
Can you play the game simply for the joy of living, or are you still searching for different cards to make you happy?
Something to ponder…
There is not much more he can do these days, but to wait.
He knew the disease would slowly take his ability to move. A few days after his diagnosis, every website that explained the disease in gruesome detail explained to him what to expect. He would steadily become a prisoner in his own body. There would be no cure, no treatment to slow this process down, and no one with answers as to why this was happening.
The days would pass, as they often do. Lives go on, people come in and out of his world, but still…he waits.
He is locked inside what was once a six-foot two-inch frame, of broad shoulders and the strongest of legs…legs that had easily ran up mountains, swam in oceans, and walked with confidence through any door. His fingers have curled, the tendons and bones are all that are left to show hands that had once caressed his wife’s body. His arms lay at his side. He no longer fights the urge to raise his arm to scratch an itch.
Instead, he calls out for someone to come wipe his eyes, to reposition certain body parts, to adjust and to maneuver.
And he waits…
His legs spasm, not in pain, but in the normal progression of the disease. He glances down at his feet.
There is nothing normal about this.
His toes are beginning to resemble his fingers as they too, curl inward. The disease has ravaged his feet. He stares at his toes, willing them to wiggle, to move, anything to prove that he hasn’t lost that small little ability.
Nothing. No movement.
He glances up.
Rolling his head from side to side, he feels the heaviness that is slowly taking hold. He knows what is coming.
Soon, the weight of his head will be too much.
He stares out the window.
There is a bustle of noise coming from the kitchen. Pots and pans clanking, the scraping of spoons as they are stirred by someone else. Someone else who can move easily from one task to another.
The familiar pang of sadness at his loss begins to creep into his consciousness. He closes his eyes.
He has been waiting. Waiting and wondering when the time comes that the smells that come from the kitchen become intolerable. He wonders how long he will have to wait before he can no longer chew the food that someone else places into his mouth. His jaw is already sore. It is getting harder to speak, and to chew.
Someone calls out his name.
The footsteps grow louder. The door opens.
He has been waiting.
Waiting for someone to come and wheel the metal arm closer to the bed. To hook each loop into the bar, and effortlessly pick him up.
He glances at the reflection in the mirror.
Legs dangling, a large sling wrapped around his body, as he hangs helplessly from the air. He looks away. He knows what he looks like. He is naked, in the most vulnerable way a man can be. There is no covering him. He is long past embarrassment, but the vision of seeing his reflection staring back at him and being incapable of covering his most private of areas, is difficult to see, even for him.
Someone pushes and grunts and pulls to maneuver his body back into his wheelchair.
He waits patiently for the metal arm to slowly place him into a sitting position in his wheelchair. A blanket has been laid gently on his lap, his teeth are brushed, and his pills have been swallowed. One of the pills catches on the way down, causing him to cough and choke.
Quickly, someone grabs the small machine and hose that is never far from reach. The machine is meant to simulate a person coughing.
He waits and tries not to feel claustrophobic as the mask is tightly pressed against his mouth and nose. He couldn’t protest if he wanted to. The machine forces air so hard into his mouth and lungs, his cheeks swell against the mask. A click of the machine, and the reverse happens, as the air is pulled, almost violently from his body. It is the only way his body can cough. Over and over again, this procedure is done, the machine straining, as it forces air in and back out again.
His airway clear again, he can breathe.
The momentary adrenaline rush at the lack of air moving fluidly through his body slows as his heartbeat returns to normal once more.
He is wheeled out into the kitchen. Someone has prepared dinner. His meal looks less than palatable. Soft foods so as not to choke again. He sighs…He waits while someone sits down next to him, grabbing a fork and begin to gracefully place the food onto the prongs and then lift it to his mouth. He opens his mouth…chews the food, moving it around his mouth, a bit of anxiety and hope that he can swallow this bite without choking again. Small bites. Slowly….he swallows.
He needs a drink. Watching, he leans forward with his head, lips outstretched towards the glass.
The effort is exhausting. He shakes his head. His jaw is tired. The water dribbles down his chin.
He waits for someone to grab a napkin and wipe up the droplets hanging, threatening to spill beside the bits of food he had been unable to hold in his mouth, that are now laying in his lap. He waits for everyone around the table to finish their meal.
He maneuvers back into the bedroom to watch television. Someone else needs to get ready for the day. The children are all running, a cluster of excitement as they get ready to leave and go about their busy lives. He positions himself in front of the screen.
He waits for everyone to say “goodbye” as they run out the door. A quick kiss to the forehead, and the door slams behind them. He listens to the stillness of the house.
The caregiver walks in. She swiftly picks up the remote, points it towards the wall, and clicks on the tiny buttons to the channels he prefers. The television has become his only outlet and escape from this disease. It is all he can do to pass his time now. He can lose himself in make believe for just a while. For just a moment, he doesn’t have to think about what he needs, what others do for him. He wants to go out. He feels trapped…trapped inside the house, and inside his body.
He watches the hours pass. Eight more hours before someone else comes to tell him about their day at work or running errands. Nine more hours before the kids arrive. Ten more hours and everyone will gather for another meal around the table. Twelve more hours and he can go back to bed.
He waits for a text message, an email, a phone call. Anything that shows that he is still participating in his life. He seldom hears from those who had once been so close to him. He wonders if they think about him. He understands that the world kept turning, he just isn’t turning with it.
He waits for visitors that never come. He wants to ask them to stop by, to sit and tell him about all the new experiences they are having. He supposes they feel guilty. He knows he makes them uncomfortable now. If, and when an old friend pops in for a visit, it is always the same. Big smiles to hide the awkwardness as they lean in for a hug. They complement him on his inspirational strength, but the smile falters. They fumble for words, for stories, and things to talk about. They feel guilty for still living, as they sit across someone who has so little time left. They glance at their watch. They need to go soon, but they promise to come again soon…But they won’t, and they both know it.
He waits for conversation…but the caregiver is busy taking care of him. The caregiver is not there for companionship. They sit out in the living room, staring at their phone. Too busy counting the hours before their shift is over so they can leave. He understands…he is counting down for their shift to be over as well.
He has to use the restroom again. He calls out for help. He waits until someone is finished doing their chores before they stomp in to help…again. He tries to hold it and tries desperately not to lose his patience. He hates asking for help, but there is no choice. He wonders what is taking so long this time.
He waits for hands to touch him, but the only caress comes in their efforts to be efficient. He misses reaching his arms around a loved one for a hug. He misses breathing in their scent.
He doesn’t want to ask for help again. It feels as if it is constant. The need for something, the constant requests for drinks, food, adjustments. He feels like a burden. Time is ticking by, and his requests grow more frequent with every passing day.
He wonders how his life came to this moment. The limbo of wanting to live but waiting to die.
He looks out the window…