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…
I really want to tell you the rest of the week went without any more issues, buuuut I can’t. In fact, I am pretty sure there is a conspiracy against me. If it can go wrong, can be forgotten or needs to be addressed immediately, then it is going to happen to me…ALL AT ONCE!
After the smoke alarm fiasco, the next day was spent just trying to put out fires…figuratively of course.
That evening was spent with a couple of girlfriends, divvying up some pre-made meals, and some much needed conversations and giggling!
Thankfully, one of those friends happens to be taller than I am, and she helped throw several new smoke alarms in so I wouldn’t have to lug a ladder upstairs. And there was also that pesky problem of my plumbing issue that she helped me get taken care of, lickety split! (four hands are better than two when needing to push two pipes together and tighten the connector together all at the same time!)
I am happy to report the following evening, there was only one more smoke alarm that came to the end of its life….at 3 am…and in my stupor of trying to jump out of bed and figure out which one it was, I ran around the house, listening for the…
Only to find the death had actually occurred in my own bedroom.
Hey, don’t laugh! I was sleep deprived! But I ripped it from the ceiling and would mourn its loss at another time. (To date, they are all now dead…I have replaced 5 of them, there are 4 more. The following deaths happened during the daytime and with little to no fanfare!)
However, Friday morning was spent something like this:
Cell phone rings…its 7:30 am..
“Mommy!!! I hit the curb and my tire popped!”
First, the teenager only calls me “mommy” when she needs something. Second, she claims to have been swatting a bug out of her face when she veered over and smacked the edge of the curb. I find this hard to believe. Third, the teenager has zero patience and was in an absolute dramatic tizzy over this…She was two blocks from school.
Okay, well, I can run over, grab a tire and get it replaced. That should only set me back maybe an hour?
I tell her to just leave her car in the parking lot where she had pulled over, and I would run over to get it taken care of as soon as the caregiver arrived.
Friend meets me there and pulls tire off so I can run it to the tire shop.
Tire shop says:
“You have to buy at least 2 tires, because we can’t sell you just one.”
Of course you can’t…I mean, why make this simple, right?
“Ok, I guess I will take two tires.”
He says, “I need the other tire, so we can mount them.”
I sort of stare at him blankly for a moment. This may be obvious to some, but I am still trying to process the fact that I am being forced to buy TWO tires against my will. I am a bit aggravated by all of this, so it took me a while to process that he would, indeed, need the other tire. I imagine telling him where he can go mount them, but that would be rude…Instead, I run back, where friend takes the other tire off..Oh, and the spare he had put on…yeah, that went flat in three minutes…
So, I take the other tire PLUS the spare to get fixed.
By the way, that will be an hour wait.
This tire fiasco took an additional four hours out of my life that I will never get back….
And that was the rest of my week in a nut shell. Not to mention I had the honor of teaching the incredibly impatient teenager how to put the tires back ON! After all, it’s her car. She should know how to do these things too!
I won’t go into the fiasco of soccer games all weekend that resulted in mass chaos because of the detrimental effects of having the wrong colored socks, or shorts, or (GASP!) the wrong number on the jersey..but that is a story for another time!
I will say this though…
I keep visualizing a moment… at some point in my life… when I am on a giant stage, with my crown perched a bit crooked on my head, accepting my “Mom of the Year Award” for my patience, and perseverance of handling teenage dramatics, soccer clothing mishaps, smoke alarms that end their lives at the worst times possible, juggling everyone else’s wants and needs,as well as all the ALS trials and tribulations, AS WELL AS all of my own drama. I can see it now…my children all cheering wildly for me, nodding their heads and shouting how awesome it was growing up with me as their mother…
I think I’ll just keep that one to myself…its gonna be a long time before ever happens…