The Caregiver No One Names

To everyone touched by transthyretin (ATTR) amyloidosis; through diagnosis, genetics, or love, come sit with me for a moment.

There is a version of caregiving that often goes unnamed.

It does not always look like daily care.
It does not always happen under the same roof.
It does not always come with a title.

But it is there.

Are you the one your family turns to?

I have spent my career in roles that require clinical understanding.

Not a clinician.

But close enough that when something happens in your family, people turn to you.

What do we do?
Is this serious?
Should we go in?

You become someone others look to.
While still being a daughter.

Adult children as caregivers to parents living with ATTR

In 2019, we were in Indiana for my grandmother’s funeral.

It was hot. Emotions were high. Stress layered into every moment.

My dad and I were talking like normal.

And then suddenly, he said my name, lunged forward, and everything shifted.

It took me a second to understand what was happening.

Then instinct took over.

We got him seated.
I asked for a cold compress.
I checked respirations, heart rate, oxygen.

And said, we need to call emergency medical services (EMS).

When they arrived, I gave history.

He chose not to go to the hospital.

They agreed, but told us to call if anything changed.

One of the EMS providers looked at me and said,
“Good job, young lady.”

I nodded.

Said thank you.

Traveling home after a crisis

And then we went back to being a family navigating what had just happened.

As a family, we decided to delay our flight home by a day to make sure he would be okay to travel.

On the plane, my dad and I sat in aisle seats in the same row. I kept glancing over, making sure he was okay.

The entire flight, I counted his respirations in my head.

Over and over.

Because his breathing was labored.

And I needed to know he was okay.

How adult children serve as caregivers to parents

At the time, I did not think of myself as a caregiver.

I did not go to every appointment.
I did not manage medications or daily routines.
I did not live in the home.

My mother carried the day-to-day weight and the anticipatory grief that comes with being there every day.

Mine showed up differently, in moments when it was acutely needed, in crisis.

Caregiving in our family did not belong to one person. It moved between us, depending on what was needed.

I often stepped in during the acute moments, alongside my family,

through emergencies,
through conversations with the care team,
through points where decisions had to be made.

And at the end…

I was the first to check for signs of life when there were none.

Caregiver roles can feel undefined

Looking back, I understand something I did not have language for then.

That was caregiving.

When you are the adult child of someone with a rare disease, your role can feel undefined.

You are their child. But also, one of the people your family leans on.
You are watching one parent decline.
While also watching the other carry the weight of loving someone through illness.

You are holding grief before it has somewhere to go.

I think now that is part of why I did not immediately grieve when my dad passed.
For six years, I was in a constant state of readiness.

Waiting.
Watching.
Responding.

When you live in that space long enough, your body does not always know how to stop.

A space for adult caregivers

The amyloidosis community is still building space for caregivers.

And even within that, there are caregivers who do not always see themselves reflected.

Adult children.
Those who do not live in the home.
Those who are there every day.
And those who step in when a crisis unfolds.

If that is you, I see you.

Tips for adult children of parents with ATTR

These are some things I have come to understand along the way:

Talk things through before you carry them alone

Whether it is a partner or a trusted friend, having a space to process decisions before bringing them to your family can make those moments feel less heavy. You do not have to stay in “decision mode” all on your own.

Support exists, even outside of your specific diagnosis

Mental health professionals may not always know amyloidosis, but many understand caregiving, stress, and anticipatory grief.

Responsibility can come in moments, not just routines.

If you are the one people turn to in critical times, that role matters, even if it is not constant.

Let someone care for you, too

Even the ones others rely on deserve support.

Navigating the space between being a child and caregiver

Caregiving is not one thing.

It is not one role.
It is not one definition.

It is love, responsibility, fear, and presence... all at once.

And for those of us who live in that in-between space, between child and caregiver, there is both weight and meaning in how we show up.

You are not “just helping.”

You are holding something that matters.

And that deserves to be seen.

Let’s continue the journey together.