Infrastructure

In addition to the logistics of ALS, there is equipment.
A great deal of it.
Equipment I didn’t know existed. Equipment most people never see.

When people imagine ALS, they picture wheelchairs and walkers. Maybe a hospital bed. Perhaps a breathing machine. Tangible things. Objects. The kinds of devices that appear in fundraising campaigns or inspirational stories—running marathons, cycling centuries, dumping buckets of ice water over one’s head.

But there is another category of equipment. The kind that arrives quietly. The kind no one advertises.

Hoyer lifts. Urinals. Portable commodes. Air mattress pads. Diapers and bed pads. Boxes of latex gloves and wet wipes. Wedge pillows. Auto-lift toilet seats with attached bidets. Cough-Assist and suction machines. AVAP, BiPAP, CPAP. Feeding tubes. Invasive vents. Backup batteries. Redundancies for when something fails—because something always fails.

These are not glamorous objects in anyone’s imagination. But they are absolute necessities. I did not know most of them existed until they began appearing in my house over weeks and months, courtesy of CCALS and E. J would show up at the door on any given day to deliver. Sometimes it was unexpected, but it was always nice to see him.

But ALS doesn’t just require equipment.

As it progresses, it becomes a logistics problem – coordinating care, equipment, people, and timing as the body changes.
But beyond that, it is an “infrastructure” disease.

Infrastructure is what replaces what the body can no longer do on its own. It is not a single device or a one-time purchase. It is a system—mechanical, human, and operational—that must function continuously, without interruption, as the disease progresses.

When people hear “equipment,” they think of objects.

But Infrastructure is what makes those objects work—together, safely, effectively, and exactly when they are needed.

A hospital bed does nothing on its own.
A wheelchair is useless without someone trained to transfer safely.
A breathing machine requires monitoring, setup, backup power, maintenance, and immediate response when something goes wrong.

Every piece of equipment creates a need for human infrastructure to support it.

As ALS advances, the list grows. Mobility support. Respiratory support. Feeding support. Communication devices. Power. Backup plans layered on top of backup plans.

And alongside all of that is the most critical infrastructure of all: people.

And that “people” is usually the caregiver.
The caregiver runs the system. Coordinates it. Troubleshoots it. Absorbs its failures. Pushes through exhaustion until the machinery of their own mind and body begins to break down.

Some people have family and friends nearby who step in willingly.
Some have people who talk about helping, then quietly disappear.
Others—like me—have no one close by. Or have always “gone it alone.” It never occurred to me to ask for help. It never occurred to me that it was okay to do so.

It wasn’t until I realized that I would no longer be able to work to pay the mortgage, or lift my husband safely, or manage what was coming, that I entered the territory of home health aides.

This is not covered by insurance. Infrastructure is the part that insurance claims is not medically necessary. It is all out of pocket. And it is expensive.

I remember telling someone early on—someone I respected, someone I thought would understand—that ALS was an expensive disease. That I was worried about the cost. That it felt money-hungry in a way I couldn’t yet fully articulate. And that I was afraid.

They responded in a way I interpreted as waving it off.

They said they didn’t understand why I was worrying about that. That money takes care of itself.

I was stunned. I didn’t know what I expected, but it wasn’t that. Even months later, I remember it clearly. I wasn’t upset or hurt. I was confused. As I thought about it, this showed me just how little people know about the disease, the logistics, and the infrastructure required to manage it. And that realization came over me slowly and was shocking in the end.

Carl and I are, by most measures, financially secure. We planned. We saved. We insured. And still, even then, I could already see what was coming: the speed, the scale, the way this disease consumes resources relentlessly.

What I understand now—what most people do not—is that the cost of this disease quickly exceeds what most people can earn at a job.

Early on, a few hours of daily help may suffice. But even partial coverage is expensive. In our area, rates ranged from $35–40 an hour to $550 a day for live-in, 24×7 support. And as we all know, live-in facilities are no better. Few people earn enough net income to cover that while keeping up with mortgages, healthcare, and the rest of life.

And the truth is that ALS will not wait. As the body deteriorates, continuous round-the-clock support eventually becomes essential. Nighttime is not a pause in the disease; gaps in care can be dangerous or life-threatening. The costs escalate accordingly, whether you are ready for them or not.

This is why some people quit their jobs.

Not because they don’t want to work.
Not because they haven’t planned.
But because the math collapses.

At a certain point, continuing to work does not preserve financial stability; it accelerates the drain. The income from a job cannot keep pace with the cost of care and managing that care often makes full-time employment impossible anyway.

What remains is an impossible choice: work and lose ground faster or step out of the workforce and survive on less.

Home health aides are not an “extra.”
They are not a luxury.
They are essential infrastructure.
They lift, turn, feed, suction, monitor, and respond. They provide safety overnight. They are there when a body must be repositioned, when breathing changes, when something goes wrong at two in the morning.

ALS doesn’t reduce the need for people.
It multiplies it.

Care must be available twenty-four hours a day. There are no weekends. No holidays. No “we’ll handle it tomorrow.” When the body cannot move, swallow, or breathe safely, delay is not an option.

Infrastructure is expensive not because it is excessive, but because it must be continuous. Because it is necessary for life.

You cannot pause breathing support.
You cannot skip overnight care.
You cannot “stretch” help when someone cannot be turned or suctioned safely.

We did what people are told to do. We built a life with intention and responsibility. The best-laid plans. The long-term view.

ALS doesn’t care.
It consumes infrastructure at a pace no financial model, no retirement plan, no life dream is designed to absorb. Not because families are irresponsible—but because the system required to keep a person alive when their body is failing is vast, fragile, and relentless. And I have come to realize more than ever what the human body can do for itself. It is the definition of miraculous.

Unlike hospitals or institutions, this infrastructure is built inside a home. Quietly. Incrementally. Often invisibly. Paid for privately. Managed personally. Held together by caregivers who are already exhausted.

People see the disease. They do not see the infrastructure it demands—or the cost of holding life together.

ALS takes the future you thought you had planned for.