Photo Credit: Christy Morgan Photography

How peaceful it felt to drive along a road that glides right into the sunset.  One that makes you feel like a bird atop trees, wings glazed by the dripping colors of the setting summer sun. This was a stark contrast to how I felt just twelve hours earlier—an evening that changed everything.

It was a late night and I’d just gotten the babies to bed. I had a one-year-old, a four-year-old, and a 14-year-old at the time, and my husband Chad’s disease had progressed to the point that he could no longer get himself up out of a chair. In fact, he could no longer do much of anything on his own. 

Chad had ALS, Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s disease, and a death sentence by all medical standards. You see, there are no therapies, no vaccines, and no preventative measures to stop this monster from rearing its ugly head and devouring a person one bodily function at a time. The life expectancy after onset is two to five years. When it was all said and done, Chad made it a little past three.

At this point in time, we were approximately a year-and-a-half in. Because of the lack of movement and spasticity he experienced in his muscles, his feet would often swell. A foot bath would always make him feel better. 

This particular night I was exhausted, and in a bad mood. Actually, I was in a horrible mood, if I’m honest. My life was disintegrating in my hands and there was nothing I could do to stop it. As is the nature of neurodegenerative diseases, my husband was dying a little more each day right in front of me, and my children were about to lose their father.  My daughter would never get to walk down the aisle with her dad. My sons would never again play catch or get to have “the talk” with him. My bank account was in the red and my car wasn’t handicap accessible, which left us mostly isolated at home. After battling this disease-monster for a-year-and-a-half, I was still the sole caregiver for a border-line quadriplegic man and three kids.

Looking back now, I can clearly see how God was sustaining me in ways only he could, but during this time, my light was fading quickly, growing dimmer with each passing day. I was quickly becoming a Jonah—a wanna-be escapee of suffering.

ALS is a cruel disease. It takes the afflicted person down piece-by-piece, slowly imprisoning them inside their own body while their mind is still fully alert and cognitively whole. It’s torture to watch and even more torturous to experience. By this point Chad’s voice was gone, and his arms and legs were almost completely deadweight. 

With every piece of him that died, a piece of me died, too.

That night I had just sat down to catch my breath. It was usually between the hours of 9:00 and 10:00 p.m. that I could actually sit, maybe take a bath, or do whatever I needed to do before my next shift started—Chad’s bedtime routine. 

The clock was always ticking and on this particular night, it was approaching ten. I’d gone hard all day. 

You see, caregiving is a non-stop job and when someone you provide care for loses their hands and feet, you become their hands and feet. When they lose their voice, you become their voice. When they need a shower, you do all the washing. When their teeth need to be brushed, you grab the toothpaste. When they need to get dressed, you do the dressing. When they need to be changed, you do the changing. When they need to eat, (in Chad’s case, through a tube) you become the administer of tube feedings. When meds need to be pushed, you push the meds.  When the urine bag needs to be drained, you drain the bag—never mind what you must do to attach the bag in the first place. When saliva needs to be suctioned, you become the one who suctions, and when it’s time to go to bed, you’re the person who tucks them in.

Caregiving like this is more than just giving care—it’s literally giving every molecule of yourself away in exchange for the wellbeing of another.

Chad’s bedtime routine took approximately one hour from start to finish. So that meant if we started at 10:00 p.m., it was at least 11:00 p.m. before I got him to bed. 

Before living this nightmare, I had no idea what ALS or this kind of caregiving looked like. If you’re in the same boat but desire to understand our world a little better, here’s what Chad’s bedtime routine entailed. It began with me strapping a gate belt around his torso, while leveraging my weight against his to stand him up out of the recliner. I would then grab around his mid-section and slowly lower him into a motorized wheelchair. Next, I would crush up the last of his nighttime medications and push them through his feeding tube. These medications were crucial to ensure Chad received a decent night’s sleep.  Then, we began the trek back to the bedroom, me driving his motorized wheelchair using a joystick wired to the back.

Once we landed in the bedroom, the chair had to be locked and placed in a specific position beside the bed. Then I would unscrew his eye-gaze computer (his main source of communication) off the wheelchair, laying it aside, and hooking it up to the charger to be ready for the next day. From this point on, we had to communicate using the blink system.

One blink meant yes. 

Two blinks meant no.

Before using my weight to leverage him out of the wheelchair and onto the bed, I would undress and then re-dress him into his bed clothes. After getting him onto the edge of the bed, I would then place one hand behind his neck and the other behind his knees, slowly moving him into a flat position. Once Chad was down, we used the blink system to make sure he was comfortable. I started with his head and scaled his body from top to bottom. If he wasn’t comfortable, he’d blink twice, and I’d begin the task of trying to figure out the source of his discomfort. Sometimes this part alone took thirty minutes before he was comfortable and ready for the night.

Lastly, once all questions had been asked and answered, I would secure the non-invasive ventilator to Chad’s face so he could breathe easier through the night. When the mask was comfortable and secure, I could finally tuck him in.

That night as I stood up next to the recliner, mustering all the strength I had to begin his bedtime routine, Chad asked for a foot bath.

A FOOT BATH? At ten o’clock at night?

How could he ask me to give him a foot bath after he knows what kind of day I’ve had? How could he expect me to do this, adding at least thirty more minutes onto his already excruciatingly long bedtime routine?

I was livid! Furious! Mad as fire—as we say in the south. 

Regardless of my reluctance, I began the process of filling up his foot bath—but I wasn’t nice about it. I wish I could tell you I joyfully filled up his foot bath and lovingly placed his feet inside, but I cannot. What I can tell you is that I not-so-patiently waited for him to finish and when he was done, I didn’t say a word. I angrily slung the couch blanket onto the floor like a two-year-old child and proceeded to grab the towel I’d sat by his chair.

As I huffed and puffed and began pulling Chad’s feet out of the water, something happened. I actually looked at his feet, and for the first time, I really felt them in my palms. They were red, puffy and looked like they’d been the source of so much pain. 

Of course, I knew Chad’s body was failing, but as I lifted his feet out of the water, I realized for the first time I was in fact holding a dying man’s feet.

A man who would soon be walking in heaven. 

A man who had walked so many miles to provide for his wife and children. 

A man who was a precious child of God.

Something massive shifted inside my heart. It was a shattering I hadn’t previously felt. Sometimes we must shatter before we take shape. In that unexpected, shattered, shape-shifting moment, my anger was replaced with compassion; I realized I wasn’t just giving my husband a foot bath—I was beautifully washing his feet. 

Instead of being served, I was serving.

Instead of being selfish, I was stewarding.

Instead of helping myself, I was helping another human who was no longer able to do so for himself.

Like a damn bursting, tears pooled-up and ran like a river, flooding the cracks and crevasses of my face. It felt like a pilgrimage, this moment did. A coming home of sorts.

With his feet in my hands, my long-traveled will surrendered. And with the next breath out, a white flag of my soul raised­—a sign of my willingness to walk, crawl, or kneel my way to seeing this journey through. 

That exhale was my “yes”.  My handshake with the pain.

Yes, the exhaustion of caregiving still felt crippling to me, but I was the one who could walk.

And I vowed then and there that even with his feet in my hands, we would walk this path together.