Traveling As A Caregiver--The trip you didn't pack for

Traveling as a Caregiver: The Trip You Didn’t Pack For

Being a caregiver is no joke. I know because I was my mother's caregiver from the time I was 16 until she passed away when I was 42.

My mother had many of the same health problems I have today, except she didn't have the benefit of many of the treatments available now. Rheumatoid arthritis took a tremendous toll on her body, and eventually she used a wheelchair.

But here's something else about my mother and me:

We traveled.

We traveled all over the United States together. We had wonderful trips, ridiculous mishaps, frustrating moments and adventures that I still laugh about today. Traveling with someone who needs care isn't always easy, but those trips gave me memories with my mother that I wouldn't trade for anything.

That's one reason I want caregivers to know this:

Caregiving doesn't automatically mean travel is over.

It may mean you travel differently. It may require more planning. It may mean you have to throw the original itinerary out the window halfway through the trip.

But different doesn't mean worse.

And neither you nor the person you care for needs to have the picture-perfect vacation for it to be worth taking.

Forget the Perfect Caregiver Vacation

Let's get real about those perfect vacations we see online.

People post smiling families standing in front of beautiful places with captions about how everyone is bonding and having the greatest vacation ever.

What they don't usually post is:

"Mom got drunk at the bar on the cruise ship and embarrassed the family."

Or:

"We had to bail Dad out of jail after he got drunk at Disneyland and was arrested for public urination."

No. We get the edited Brady Bunch version of everybody's vacation.

And when you're a caregiver, looking at those perfect trips can make you feel as though you're doing something wrong when your vacation is messy.

You're not.

Life is messy. Caregiving is messy. Vacations can be messy.

If you're caring for someone who is sick, disabled, aging, chronically ill—or some combination of those things—you can still have a wonderful vacation.

The secret isn't creating a perfect trip.

It's creating a trip that works for the two of you.

Redefine What a Great Vacation Looks Like

Your vacation doesn't have to look like anyone else's to count.

In fact, if you haven't traveled together before, I wouldn't necessarily start with a two-week international adventure. Start small.

Take an overnight trip. Spend a weekend somewhere close to home. Try a three-day road trip.

Think of it as a practice trip rather than a lesser vacation.

You'll learn how your loved one handles long stretches in the car, how much rest you really need, what you packed that you never touched, what you desperately needed and forgot, and how much activity is realistic in one day.

You may discover that your loved one does beautifully in the morning but needs several hours of rest in the afternoon. You may discover that you planned twice as much as either of you actually wants to do.

That's useful information.

Every small trip teaches you how to make the next one better.

If the idea of testing travel before committing to a major vacation sounds helpful, read Get Out There and Practice Travel. A short practice trip can show you what works—and what doesn't—before you're hundreds or thousands of miles from home.

Plan Ahead—But Don't Assume

My mother was a Wild West and Civil War historian. She read about those subjects every day regardless of what else was going on in her life.

So imagine her excitement when we planned an eleven-day Wild West road trip.

We knew which states we were driving through and the major places we wanted to visit, but we were also winging quite a bit of it. There's nothing necessarily wrong with that. Some of my favorite travel memories have come from plans changing.

But when you're traveling with someone who has mobility or medical needs, there are certain things you really don't want to wing.

We were in Denver, Colorado, when we found a Wild West museum nearby. The museum was inside an older single-family home.

We paid admission and started walking through the exhibits.

Then I saw the stairs.

My stomach dropped.

Most of the museum's collection was upstairs.

My mother couldn't get up there.

The employees wouldn't give her a refund, and there wasn't an accessible way for her to see the exhibits. I ended up going upstairs and taking pictures so I could show my mother what was there.

She was devastated.

This was exactly the kind of museum she loved, and she had been excited about seeing it.

The disappointment stayed with her for a couple of days.

It didn't ruin our trip—we still had a fantastic Wild West adventure—but it taught me a lesson I've never forgotten:

Don't assume accessibility. Ask exactly what accessibility means.

A website saying "accessible" doesn't necessarily tell you whether every exhibit is accessible, whether there are stairs, whether a wheelchair fits comfortably through the building, whether an accessible bathroom is available or whether someone using a mobility device can participate in the main experience.

Call ahead when something really matters.

Ask specific questions based on the needs of the person you're traveling with.

That five-minute phone call can prevent a lot of disappointment.

And sometimes it can save you money, energy and precious vacation time.

A Little Help for the Caregiver

If you're taking a trip with someone who depends on you, you don't have to keep every medication, emergency number, backup plan and tiny detail in your head.

That's why I've created a Caregiver Travel Kit to help you organize the important information before you leave home.

We'll talk more about it at the end of this article, where you can download your free copy.

Because the caregiver deserves a backup plan, too.

You can get my travel workbooks and much more by joining the Single, Sick and Broke Traveler community! Click the button below.

Before You Go: Plan for the Things You Hope Won't Happen

When you travel as a caregiver, preparation isn't about expecting disaster.

It's about making a problem easier to handle if one happens.

Before leaving, make sure you have:

- A written medication list, including dosages and schedules.
- Enough medication for the trip plus extra in case you're delayed.
- Important medical information on paper—not only stored on a phone.
- Emergency contacts.
- Insurance information.
- Information about mobility equipment or medical devices your loved one uses.
- The locations of nearby hospitals, urgent care centers and pharmacies.
- Transportation options that can accommodate mobility needs.
- Refundable or changeable reservations whenever the budget allows.
- A backup plan for activities that may become too difficult.
- Enough downtime built into the itinerary.

And there's another question caregivers don't always think about:

What happens if you get sick?

You're the person doing the helping, but you're still human.

If you're suddenly unable to drive, push a wheelchair, manage medications or handle another essential task, who can help?

You don't need to anticipate every catastrophe imaginable. You just need a reasonable Plan B.

If medications are part of your travel responsibilities, my article Traveling With Chronic Illness Part 1: Managing Medications goes into more detail about keeping medications organized and accessible while traveling.

Pace the Trip for the Person You're Actually Traveling With

It's easy to build an itinerary based on everything you could do instead of what the two of you can comfortably do.

Those aren't necessarily the same thing.

One major activity a day may be plenty.

You may need an afternoon nap. You may need a day with absolutely nothing planned. You may need to leave an attraction after an hour even though you paid for the whole day.

That's okay.

Build rest into the itinerary before somebody needs it.

Keep everyone hydrated and fed. Know where the bathrooms are. Pay attention to heat, cold and long periods of standing or sitting. Give yourself more time to get from one place to another than you think you'll need.

The goal isn't to squeeze every possible experience out of every day.

The goal is to come home with good memories rather than needing a vacation from your vacation.

Make Memories, Not a Performance

Remember why you're taking the trip.

It's for you and the person you love.

You don't need to prove anything to the people watching from home. You don't have to visit every attraction. You don't need photographs showing that you were smiling every minute.

Spend time together.

Eat something good.

Sit somewhere beautiful.

Laugh when things go wrong.

If your loved one needs to spend an afternoon resting in the hotel room, maybe that's exactly what that afternoon needs to be.

A vacation isn't successful because you completed the itinerary.

Sometimes the best part is simply being somewhere different together.

Expect the Unexpected—and Don't Take It Personally

I can't tell you how many times something has gone sideways during one of my trips.

One of the more memorable examples happened when I planned an East Coast vacation for my mother and me.

I had saved for months to buy her a collapsible mobility scooter. I thought it was brilliant. It would be easy for her to get in and out of the rental car, and we could break it down and put it in the trunk.

The idea was good.

The execution?

Not quite.

This scooter was one of the early models, and it had bugs.

The seat had to be replaced three times.

They sent us replacement seats to two different hotel rooms.

Then the battery died too quickly.

At one point, my mother and I were sitting in a plug-in area on the side of a skyscraper in Manhattan trying to recharge the scooter so we could get back to our hotel.

The company even sent a mechanic to our hotel to try to fix the crazy thing.

I had spent a considerable amount of money on that scooter. I had planned carefully. I expected it to work.

And I was angry.

The more things went wrong, the more frustrated I became.

Then my mother told me something I needed to hear.

My attitude was making her feel guilty.

She knew I had spent money on the scooter. She knew how much work I had put into the trip. And now she felt as though her need for the scooter was somehow responsible for my unhappiness.

That stopped me.

She wasn't the problem.

The broken scooter was the problem.

And my frustration wasn't fixing it.

So I changed my attitude and changed my expectations.

And you know what?

We ended up having a pretty amazing vacation.

Flights get canceled. Weather changes. Equipment breaks. Somebody wakes up exhausted on the day you planned the biggest activity of the trip.

That doesn't automatically mean the vacation is ruined.

Sometimes the story about the thing that went completely sideways becomes the story you laugh about years later.

You're on Vacation Too

This is the part caregivers often forget.

You're so busy making sure medications are packed, transportation works, the hotel is accessible, everyone eats, everyone rests and everything gets done that suddenly you realize:

You haven't had a vacation at all.

You're just caregiving in a different ZIP code.

And sometimes taking care of yourself means changing the plan right then and there.

I remember being on a road trip with my mother and reaching the point where I was simply exhausted.

I didn't need another cup of coffee or another hour of telling myself I could keep going.

I needed sleep.

So we pulled into one of the rest areas along our route, and I took a nap while my mother sat there and read.

That was it.

There was no reservation. It wasn't on the itinerary. We didn't have to rearrange the entire vacation. I listened to what my body was telling me, stopped somewhere safe and rested.

When I woke up, I felt refreshed, and we continued our trip.

That's something caregivers need permission to do.

If you need a break, take the break.

You don't have to wait until the scheduled rest day. You don't have to push yourself until you reach the hotel. And you certainly don't get extra vacation points for arriving somewhere completely exhausted.

When you're the caregiver—and especially when you're the driver—your well-being is part of the safety plan.

Sometimes the smartest thing you can do for everyone is pull over, rest and start again when you're ready.

When I traveled with my mother, I also sometimes took a walk while she rested. I went sightseeing on my own for a little while. It gave me time to breathe and gave her time to rest without worrying that she was keeping me from doing something.

Your break doesn't have to be dramatic.

Read a book while your loved one naps.

Sit with a cup of coffee by yourself.

Watch the sunset.

Walk around the hotel.

Spend half an hour doing absolutely nothing.

If circumstances allow it, take turns with another family member or caregiver so each of you gets some time away.

Taking a little time for yourself doesn't mean you're abandoning the person you care for.

It means you're remembering that you are a person on this trip, too.

And if you're struggling with the idea of taking time away from caregiving altogether, read 15 Ways Caregivers Can Take a Vacation Without the Guilt, Stress, or Chaos and How to Take a Vacation When You're a Caregiver and Someone You Love Depends on You.

Sometimes caring for someone well also means figuring out how to let someone else take over for a little while.

A Final Word From Someone Who Gets It

Traveling with someone you care for can be wonderful.

It can also be exhausting.

Sometimes you'll be the caregiver, travel planner, driver, medication manager, luggage handler, problem solver and emotional support person before breakfast.

There may be moments when you wonder why you thought taking a vacation was a good idea.

Then there may be a moment when you're sitting somewhere you've never been before, laughing together about something ridiculous that happened that morning.

That's the part I remember.

I don't remember every hotel room my mother and I stayed in. I don't remember every restaurant. I certainly don't remember every item we packed.

I remember her.

I remember the adventures.

I remember watching her experience places she'd read about for years.

And I'm grateful we went.

So no, you don't have to travel perfectly with someone who depends on you.

You don't have to travel often.

You don't even have to travel far.

You just have to find the version of travel that works for the two of you.

Make travel fit your life—not somebody else's.

Remember:

You are doing the best you can.

You are allowed to enjoy the trip, too.

You are allowed to change the plan.

You are allowed to rest.

And you and the person you care for are allowed to see the world together in whatever way works for you.

Get Your Free Caregiver Travel Kit

You already have enough to remember.

Let me help with some of it.

I've created a free Caregiver Travel Kit to help you organize the important information, preparations and backup plans that can make traveling with someone you care for a little easier.

Left-click the Caregiver Travel Kit below to download your free copy.

And if you'd like more realistic travel help for caregivers, spoonies, solo travelers and anyone trying to make travel work around real life, click the Join the Tribe button below and become part of our community.

No perfect vacations required.

Just real people finding ways to travel despite whatever life has handed them.

Get there your way.

The Single, Sick & Broke Traveler

Travel stories for the brave and budget-conscious.

Contact Me!

nessa@singlesickbroketraveler.com

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