For The Caregivers - You Are Warriors Too

Pat - ALS Patient

This morning hit me in the face like a brass-knuckled bastard. I woke to the bugle call of Pat’s TV. Shit! He got himself out of bed and over to the sofa without me again. I scramble down the stairs in my sleep shirt and full bedhead to see if he is okay. I also want to survey what fresh hell awaits me.

Rat-ta-tat-tat! Rat-ta-tat-tat! Slam! Thud! Medic! Medic! I reach the last step. Yep, it’s the opening scene of Hamburger Hill with the disemboweled soldier. At six-o-fucking-clock. A-fucking-M. Pat is up. He doesn’t want to miss the day or the war, or so it seems. He’ll hoist his naked ass up with what’s left of his arms, pivot until his legs dangle off the bed, then haphazardly launch his torso into the wheelchair, hoping the rest of his body will properly follow. It’s pure physics, he says. If his wrecking ball/trebuchet maneuver is successful, he’ll motor over to the living room and select the day’s breakfast matinee. 

This is Pat’s routine when I decide to sleep in until 6:15. A-fucking-M. He gets up without me.

This morning, I fall out, get dressed and hurry down the steps to empty two full urinals before it is time for Pat to fill them again. The moment my right foot hits the first floor, a giant time suck ensues. I won’t make it upstairs to shower until after the urinals are cared for; coffee is made; supervision of the morning bowel movement is over; a breakfast of peanut butter egg sandwiches on buttered English muffins is prepared, served and dishes are collected, cleaned, and returned to their cabinet; the urinal has been emptied again; and a fresh cup of ice water is delivered to the $32 cup holder attached to the $67,000 motorized wheelchair. I am sure there is more to do but that is all I can muster out of my war-torn body. I have not mentioned feeding myself because there is no time for sustenance for the spouse caregiver, or CALS as we are called. Pat is my PALS – person with ALS.

On a good day, I get upstairs to take my shower about two hours after I hit the first floor. Good days are few and far between. Usually, after I complete the first two-hour routine, calls from health care providers start coming in. At the same time, one of Pat’s eight therapists knocks on the door. We have anywhere from fourteen to twenty health care visits every week. Pat has physical therapy, occupational therapy, speech therapy, respiratory therapy, a home health nurse, an aide and two social workers. Sometimes I do not shower until after 3 p.m. or later. Pat’s medical caregivers think I live in my pajamas!

Being a CALS is like landing in a hot LZ during a tornado. You’re in the middle of a blissful marriage and the next thing you know, you’ve been drafted in the war that is ALS. There will be doctors, specialists, therapists, surgeries, hospital-sized medical equipment, prescriptions, a mobility van and a remodeled accessible house to hold it all. The shear velocity of it all will rape you of the person you once were, turning you inside out like the disemboweled soldier in that opening scene. Neither you nor your PALS will return to your former bliss. And you are not allowed to scream from the pain.

People say I am resilient. They say, “You go girl!” and “You got this!” Do they really mean it? What is this badassery they speak of? Do they actually believe I can be a 24/7 CALS dispensing meds, emptying urinals, suctioning with the cough assist, lifting with the Hoyer, turning with the pivot disc, changing the nasal canula, sterilizing the IVAP, scheduling the physician appointments, managing the bills, fetching the water, the cell phone and TV remote, cooking every meal, doing all the laundry and cleaning the house every week? Do they think this perpetually going girl has really got this?

Did I mention there is no screaming? When a CALS complains, it is just selfish. Afterall, CALS are not the ones suffering. We are not the ones dying. We have no right to scream holes in steel walls. We should sit quietly and silently watch our loved ones die, from the inside out, like the disemboweled soldier. ALS is the most horrible death imaginable where the PALS’ nervous system slowly stops communicating with the brain. Your PALS will lose feeling and then function. It might be the feet first but some lose their arms first. Either way, ALS progresses until the PALS is fully paralyzed but fully aware. Towards the end, they cannot use their voice. They cannot breathe. They cease. We as CALS cannot use our voice either. We are expected to work quietly for 24 hours a day, with no sleep, no help, and no complaints.

People might say my husband before ALS pampered me, so I deserve this karma. No one deserves this. Not the PALS, not the CALS, not even Satan.

I say all this from the heart, from my own grieving, angry, tired, turned inside-out, unheard heart. I say this for all the CALS whose voices have been silenced. You are all warriors in the battle that is ALS. With this writing, I have said it for you. I say you are heard. You are amazing. And you are loved.