The Job Nobody Applies For: A Letter to My Future Caregiver

By: Richie Pikunis

If it were possible to send a letter backward through time, this is the one I would write.

Not to my younger self.

Not to the doctors.

Not even to the person who first told me I had Parkinson’s.

I would send it to the person who, someday, will quietly become my caregiver.

The person who will step into a role neither of us fully understands yet.

Because by the time Parkinson’s makes that role unavoidable, it will already feel overwhelming. The learning curve will be steep, the emotions complicated, and the exhaustion very real.

And if I could give that future caregiver anything in advance, it wouldn’t be medical advice.

It would be honesty.

It would be permission.

It would be a warning about the storms ahead and a reminder that they are not crazy for feeling the way they will feel.

So if time allowed it, this is the letter I would send.

_____________________________________

Dear You,

I’m writing to you from a future neither of us fully understands yet.

Right now you may not even realize that one day you will become my caregiver. Maybe you’re a spouse, maybe a friend, maybe a child, maybe someone who simply refused to walk away when things got hard. However it happens, our lives will slowly start orbiting the same strange gravity called Parkinson’s disease.

And I need to tell you some things before we get there.

First, you should know that none of this is fair.

Not for you.

Not for me.

Not for anyone who loves someone with a degenerative disease.

You didn’t sign up to monitor medications like a pharmacist, learn neurology like a medical student, and become a crisis manager at three in the morning because hallucinations decided to stop by for coffee. But somehow, somewhere along the line, you will find yourself doing exactly that.

And you will do it because you care.

But caring comes with a cost no one talks about.

There will be days when you are exhausted in ways sleep cannot fix. Days when you feel invisible because the disease becomes the loudest voice in the room. Days when you will feel guilty for wishing—just for a moment—that life could go back to what it used to be.

Let me tell you something now so you don’t carry that guilt forever.

Those feelings do not make you a bad person.

They make you human.

You are allowed to be frustrated.

You are allowed to be tired.

You are allowed to hate Parkinson’s with the fiery passion of a thousand suns.

I hate it too.

You should also know that Parkinson’s is not just tremors and slow walking like the commercials suggest. It is a thief that steals things in small pieces. Sometimes movement. Sometimes sleep. Sometimes memory. Sometimes personality.

Sometimes the person you knew will seem to disappear for a while.

But here is the part I need you to remember.

Even when I seem different…

Even when I am confused…

Even when the disease makes me say things that sound nothing like me…

I am still in here.

The real me will still be there, somewhere beneath the noise Parkinson’s creates.

So when the hard days come—and they will—remember that you are not fighting me.

You are fighting the disease.

And I promise you something in return.

I will try to laugh whenever I can.

Because humor may not cure Parkinson’s, but it is the only weapon I’ve found that makes the disease nervous.

We will need that laughter. A lot of it.

There will be moments so absurd that the only reasonable response is to laugh at the ridiculousness of the situation. Like when my body refuses to move for no logical reason, or when medication schedules start to look like a NASA launch sequence.

If we can still laugh, we are still winning.

And one more thing you need to hear.

You cannot carry this alone.

Caregivers are famous for sacrificing themselves until there is nothing left. The world praises that kind of devotion, but I’m asking you not to disappear inside it.

Take breaks.

Ask for help.

Leave the house.

Remember who you were before Parkinson’s entered the room.

Because the person you were is still important.

Maybe more important than ever.

If I could give you anything in advance, it would be the permission most caregivers never receive:

You are allowed to take care of yourself too.

And finally, thank you.

Thank you for the patience you will show on days when patience feels impossible.

Thank you for the love you will give when the disease tries to make both of us forget what love looks like.

Thank you for standing in a storm that neither of us asked for.

Parkinson’s may take a lot from us.

But if we face it together—with honesty, stubbornness, and the occasional inappropriate joke—then it won’t take everything.

And that matters more than you know.

With gratitude from the future,

Me