Caregiver Chronicles: When Hope Is Defunded

I haven’t written here in close to a year.

Not because caregiving stopped—if anything, it intensified—but because I ran out of bandwidth to explain a life that no one seemed to be listening to anyway. I didn’t volunteer last year. I didn’t advocate. I didn’t write. I went quiet.

Caregiving continued almost every day.

What changed was me.

The last year stripped something personal from me—layer by layer. Loss. Grief. The slow realization that while my life had narrowed to schedules, supervision, medications, and contingency planning, the world kept spinning as if this kind of labor didn’t exist.

And then came the policy cuts.

Cuts to Medicaid, which so many families rely on to keep elders housed, supervised, and alive with dignity.

Cuts to the National Institute of Health, which fund the research people like me are told to “just be patient” about—research that might slow, treat, or one day prevent the cognitive diseases quietly hollowing out our loved ones.

I started to spiral.

I began to wonder if any of it mattered.

If advocacy mattered.

If awareness mattered.

If research mattered.

Maybe this is just life, I told myself. People get old. Dementia happens. You ride it out. There’s no cure. No real treatment. Maybe this is what we’re all supposed to accept.

But here’s the thing: acceptance hits differently when hope is actively withdrawn.

Especially when the people making those decisions—politicians, administrators, power brokers—will never compete for care. They will never have to choose between a Zoom meeting and making sure someone hasn’t wandered out the front door. They will never manage medications between classes or shifts or deadlines. They will never fear what happens when they get sick themselves, because there will always be paid help waiting in the wings.

The rest of us don’t have that luxury.

For eleven years, I’ve lived in a long tunnel with no visible end. I’ve given up opportunities—professional, personal, relational—because caregiving doesn’t pause. It doesn’t care about ambition, marriage, or freedom of movement. Life has to be scheduled around someone else’s needs, indefinitely.

Caregiving for an aging parent is often compared to parenting.

That comparison is deeply flawed.

Children are meant to grow up.

Care needs are meant to lessen.

There is an arc, a future you can imagine.

This has none of that.

And I’ve noticed something uncomfortable: people who chose to have children often have the least sympathy. Perhaps because they can’t imagine being drafted into this role without consent, without milestones, without an end date.

I didn’t choose this.

Most caregivers don’t.

We inherit it.

I started Caregiver Chronicles because I felt alone.

And the truth is—I still do.

I had a husband who helped with some of the physical tasks. My mother has a partner. But the day-to-day weight, the vigilance, the planning, the emotional erosion—that belonged to me.

Still does.

This year didn’t make me new.

It made me quieter.

More hollowed out.

Less sentimental about hope—but still unwilling to abandon it completely.

So I’m writing again.

Not because I feel strong.

Not because I think everyone is listening.

But because disappearing helped no one—not even me.

If this resonates with you, you’re not imagining it.

If you’re tired in a way rest doesn’t fix, you’re not failing.

If you feel erased by a system that benefits from your silence, you’re not alone.

I don’t have answers.

I don’t have a rallying cry.

I have this truth:

Caregiving is real.

Caregivers are real.

And hope should not be a budget line item that can be quietly erased.

Even if no one is listening—

I am still here.

And so are you.

If you’re a caregiver and this resonates, you don’t need to comment, share, or explain yourself.

Just know this:

You’re not imagining the exhaustion.

You’re not failing because you’re tired.

And you’re not selfish for noticing what this life has taken from you.

If you’re not a caregiver but you’re reading this, the most meaningful thing you can do is resist the urge to minimize, fix, or reframe what you’ve just read. Listen. Remember. And when conversations about healthcare, research funding, and social support arise, understand that these decisions land in real homes, on real people, every day.

Caregiving doesn’t need more praise.

It needs visibility, resources, and honesty.

Silence has never protected caregivers; if truth makes the room smaller, so be it.