When Care Becomes the Focus Instead of the Life
Alex living life…riding his functional electrical stimulation cycle.
When Care Becomes the Focus Instead of the Life
As I’ve spent time reviewing support plans, medical records, waiver documents, assessments, and service plans, I have noticed a pattern.
The conversation often becomes centered around care….basically tasks like bathing, and making sure his diaphragm pacer wire site is cleaned.
All of those things matter.
In fact, for many medically complex individuals, they matter tremendously.
But there is a question we should be asking:
What is all of that care actually for?
Because the purpose of care is not care.
The purpose of care is life.
My son Alex sustained a catastrophic injury at age six that left him paralyzed from the neck down.
He requires extensive physical assistance every day.
He cannot reposition himself.
He cannot transfer himself.
He cannot dress himself.
He cannot physically perform many of the tasks most people take for granted.
If someone looked only at a list of support needs, they might conclude that Alex’s life revolves around receiving care.
But that would completely miss who Alex is.
Alex is a writer.
He started a blog in January 2026. https://straightnews100.blogspot.com/?m=1
He studies current events, world affairs, theology, history, politics, and culture.
He doesn’t simply read headlines.
He researches.
He studies historical context.
He compares sources.
He develops his own analysis and conclusions.
Alex enjoys deep discussions about faith, history, culture, and world events.
Each week, at least one elder from church come to visit. On most weeks, another elder comes as well.
What is fascinating is listening to snippets of those conversations.
These are not caregiver conversations.
These are not task-oriented discussions.
These are adults males hanging out talking. What they talk about is varied.
When they are visiting, I usually stay in another room unless I am needed.
Why?
Because Alex is an adult.
He is perfectly capable of directing his own conversations, relationships, beliefs, and decisions.
The fact that he cannot physically move his arms does not mean he cannot direct his own life.
That distinction is incredibly important.
Too often, systems unintentionally reduce people to the physical support they require. Oddly, with the need for extensive physical help often comes a thought that that individual cannot communicate or think.
But Alex is not a collection of tasks.
The physical support exists because his body cannot do certain things right now
The support does not exist because he lacks a life.
In reality, the support exists so he can live life and do the things he desires to do.
The goal is not simply keeping him alive.
The goal is helping him live.
There is a difference.
A profound difference.
One focuses on maintaining a body.
The other focuses on supporting a person.
The best support systems understand this.
They recognize that the assistance being provided is not the destination.
It is the bridge.
The bridge that allows someone to continue participating in the life that belongs to them.
Perhaps one of the most important things we can remember when working with individuals who have significant disabilities is this:
The care is not the story.
The person is.
The care simply helps make the story possible.
#TheGoalIsLife
