Taking a Step Back: Adjusting to the Caregiver Title

I don't even know what's going on.

You may not have absorbed the fact that your parent or loved one is getting older and may need help even if they don’t want it. Maybe they don’t seem that old. Maybe you don’t seem that old. If it’s not (really-really) broken, don’t fix it.

But you’ve started to hear things you didn’t hear before. One of your parents saw a doctor about low levels of something or another in their blood, but they sorted it out, so there was no cause for alarm.

Your other parent sleeps more than they used to, like, most of the day, but it’s just a temporary thing because of that one busy week or after a long vacation.

There was a fall in the bathroom, but they laughed when they told you.

Your parents don’t tell you the details of any of this. They don’t even seem to know the details themselves, waving off any concern you express, so you move on.

But some things you can’t unhear.

Shifting Your Mindset

At this point, you don’t even know what you don’t know. And you completely trust the healthcare system because that’s what they do, right? If your parents have worked their entire lives, paid for health insurance, and have all their Medicare supplemental whatnot, then they should be golden, right?

The chronic diseases your parents may have been diagnosed with along the way were just lower-case descriptions, not the prelude to bigger issues. Lots of people have blood pressure issues, loads of folks have type 2 diabetes, and small strokes are really small: these were one-off announcements. Phew!

Or is there something more?

Things might be fine. Or maybe this is just a blip. It’s absolutely possible. But what if things do get worse?

Things can happen. I mean, to be honest, things do happen.

They say that major health events are what prompt many to change their lifestyle. Major health events also prompt families to wake up to a new reality.

All it takes is one phone call, and everything is different. If you’re lucky, it won’t be the last phone call. If you’re lucky, this is an invitation to participate in a type of growth you’ve probably never imagined or wanted, but that’s for another conversation.

When You Get That First Call

Let’s say you get a call that your parent is in the hospital’s intensive care unit. (I got that call.) You speak to the parent not long after that and they are lucid, conversational, and say that it’s nothing life-threatening. (They were internally bleeding and had vomited blood all over the ambulance.)

The nurse tells you their vitals are stable, which seems reassuring even if you’re not really sure what that means and aren’t they still in the intensive care unit for a reason?

You wonder who you’ll be in that moment.

“But things can change fast, right?” you ask the nurse.

“Yes, they can,” the nurse responds without a moment of hesitation.

“And I would never regret showing up, right?” you ask, wondering what was on your calendar for that day.

“No, you wouldn’t,” they say just as quickly.

Okay, I know what to do, your brain says, telling your fingers to type out those meeting cancellations and whatever suddenly non-essential items are on your calendar. Then, you pack a bag and head to your car.

Or maybe you don’t.

The Rubber Meets the Road

Here’s the thing. It’s not always clear what to do.

The severity of an incident may be enough information for you. Or maybe you’ll need to spend more time assessing your own life before hopping in a car. Maybe you’re panicking because you don’t really know what to do once you show up, so maybe it’s better not to show up and just let the professionals do their thing.

On a higher level, this is a good time to start thinking about your responsibilities and your desires. Many of us grew up thinking that the healthcare system was a well-oiled machine that would take care of our health and related logistical needs without needing inventions from loved ones.

We assumed that medical care professionals followed every detail of our loved one’s health history as if they were their own family.

We thought that specialists coordinate closely with each other. Maybe they all have coffee together in the mornings or regularly talk by phone after seeing a mutual patient.

We thought that primary care providers were paid as well as any physician since being a doctor is prestigious.

We thought the incoming physician would certainly read all the notes taken by the previous one.

We thought there was no need to ask questions or make suggestions.

We were wrong.

These are all great ideas, but that’s not how it consistently works. I say this with respect to medical care providers. In fact, I do this in partial service to them.

They have 100 patients. You have one.

Only in rare instances have I seen a nurse or physician bristle in defensiveness from a follow-up question, providing more context about a parent’s health conditions or commenting about the care.

It is a conversation, not a monologue.

Their insights, in many cases, are based on what is right in front of them. Your insights are part of an arc of experience.

Not every person wants to track the details of their own health. The blood panels, the monitoring, the suspected diagnoses, the treatments: all the words. So many incomprehensible words.

If left on his own, my dad listed nothing on intake forms. I would later inform the specialist of his chronic and terminal illnesses, which was important because they often do not read the records, either because they are in a separate healthcare system or the competing demands on their time.

Real Talk

It is entirely possible that you will be the expert in your parents' health—not the doctor, nurse, specialist, or some guy on the internet. You may be the person with the most information about their specific case.

That may freak you out, or it may empower you, or a little of both, but you have entered a new reality. Good thing you're on top of it.