Monday, October 7, 2019

Caregiver Burnout: You Can't Avoid It, But You Can Get Through It

Image by Ulrike Mai via Pixabay

I recently experienced a pretty nasty bout of caregiver burnout. In fact, I'm still trudging through the final stages of it.

And I want to talk about it.

Caregiver burnout isn't necessarily a "taboo" topic in the caregiving world. It's been written about over and over again. But most of the articles I see about it are centered around how to avoid it. And while some of the advice I've read in these articles is helpful, the stark truth about caregiver burnout is that it can't be avoided.

If you are a caregiver - particularly if you're a full time caregiver for someone who needs care 24/7 - you WILL experience caregiver burnout. And you'll very likely experience it more than once.

Caregiver burnout isn't this one-time-only, exclusive experience where you hit rock bottom. And the path to recovery often doesn't involve a work out regimen, a complete overhaul of your diet, or an impromptu getaway. That's all a glamorized version of how it works.

Because caregiver burnout is messy. And coming out of it usually means just getting back to a place in your life where you're juggling chainsaws instead of dropping them all over the place.

Caregiver burnout is like falling into a pit of lightning sand, clawing your way out, only to find that you're still living in the Fire Swamp.


I am a full-time caregiver to my husband Jeff who has a spinal cord injury from a diving accident in 2013. I have been his hands and feet for the last six years. I think that by nature, a caregiver's life is overwhelming. If you're taking care of someone else, that means you're also taking care of yourself - or trying. And taking care of everything else like meals, cleaning, bills, kids, pets, appointments ... you get the idea.

Caregivers learn to live with - and operate within - the overwhelming. Burnout happens when the overwhelming becomes too much.

I absolutely despise quotes about not being given more than you can handle.

"God won't give you more than you can handle."

"It is not more than you can handle. It is more than you thought you could do."

"This is your reminder that you can handle whatever this week throws at you."

Really?

Let me tell you how well I handled my most recent breaking point.

It was last week. I could feel the burnout coming on. My husband hadn't been feeling well. His stomach issues were acting up again. He was talking about the possibility of having to go to the hospital - again. Hoping this time we could convince doctors to try more tests. Hoping for answers. I was going about my daily overwhelming caregiver routine with the extra weight of anxiety about a possible hospital visit.

I need to make a list of what to pack. I need to make sure Evie is prepared. She wasn't understanding her math last night. We need to go over it tonight so she doesn't fall behind in school. I need to do laundry. I don't have clean socks. The last hospital visit I had to wear the same pair of socks for four days. I need to check the pool chemicals in case we're gone for a week. I don't want to come back to a green pool.

My caregiver brain was on overload. I couldn't seem to calm it. And I couldn't find any time for myself either because my to-do list just kept growing.

But then Jeff had an afternoon where he was feeling a little better. I got him up in his wheelchair, and he joined us for dinner and watched TV in the living room into the evening.

And when it was the usual time to get him back to bed, he said he wanted to stay up a little longer.

Suddenly I found myself with thirty minutes of that rare gem that so often eludes caregivers ... time to myself.

I sat down in the bedroom with my crochet (my "me-time" activity) when it happened.

Our daughter Evie called from the bathroom. "Mom! The toilet is clogged." I closed my eyes and tried to push down my rising anger. I told myself I'd plunged the toilet a million times. This would only take a minute.

I plunged. The water started to recede - a bit. But not all the way.

So I flushed. And plunged some more.

The water started rising. I was plunging furiously. When it was an inch from the top, I knew there was no way to hold it back. And by the time it started spilling over, splattering all over the floor, my tears were already streaming down my face.

I wasn't just crying. I was sobbing. Loudly.

My thirty minutes to myself were gone. They were replaced with:
- sopping up toilet water with towels
- mopping the bathroom floor
- cleaning the toilet
- starting laundry

I did it all through chest-racking sobs. I smashed the mop into the wall so hard that I broke it. I wanted my thirty minutes back, but I couldn't have them because I knew what was waiting for me on the other side of this sh*t show. I had to get my husband back to bed, charge his wheelchair, feed him a snack, do two breathing treatments followed by suction, empty his urine bag, change his colostomy bag, brush his teeth, give him his night time medication, then get myself ready for bed.

I was furious.

I was defeated.

I was falling apart.

I definitely wasn't "handling" any of this.

That was my burnout moment. The moment where overwhelming became too much. Funny how the moment itself didn't have anything to do with caregiving. It usually doesn't.

I spent the next day in a fog, exhausted from my emotional breakdown. I spent the next week in a funk. I did everything I had to do as a caregiver - as a mom - as the able-bodied adult for our family and our home. I didn't miss a beat. But the moment one speck of extra tipped my full plate, my emotions raged.

I wasn't on my period. I wasn't PMS-ing. I wasn't being irrational. I wasn't acting hysterical.

I. Was. Burnt. Out.

So what happened? How did I turn this burnout barge around? Let me tell you, it wasn't instantaneous. But there was a definite shift once I did a few things.

I slowed down a bit. I let some things fall off my plate, and I didn't freak out about not picking them back up.

And for a couple days, Jeff and I did something we don't normally do together. We binge-watched one of our favorite TV series. In a block of a few hours each day, we finished season 3. We talked about it and analyzed it. We reconnected with one another. And I recharged my fizzled out batteries.

It wasn't easy. I kept saying out loud to my husband how guilty and lazy I felt sitting there just watching TV when there was laundry to do and a kitchen to clean. When his toenails needed clipping and his hair needed washing.  But he was adamant in telling me that I wasn't being lazy. That I was doing exactly what I needed to do in order to keep going.

Sometimes caregivers need to be reminded of that.

I'm not a medical or mental health professional, so if you're a caregiver, I can't officially offer you advice on the topic of burnout.

But I am a caregiver. And I've experienced burnout on several occasions. If you're a caregiver, chances are you have too. And I'm here to tell you that it's okay to burn out. It's okay to break down. It's okay to not handle it with grace and dignity.

I honestly think that going through a burnout is kind of a right of passage as a caregiver. I really don't think you can avoid it.

But I know you can get through it.

I'm not going to list the ways because so much depends on individual situations and comfort zones. But I'm hoping that by sharing what's worked for me encourages you to find something that works for you.

Sometimes just knowing you're not alone can help begin to pull you from the weight of the ashes.

xoxo

p.s. If you're wondering what the TV series was that helped lift me from the pit of burnout, it's about a woman continually pushed beyond her breaking point who charges forward despite her abysmal circumstances. Here's a two-word hint: Praise Be.

Thursday, September 19, 2019

The Painting

Fourteen years ago this month, Jeff and I honeymooned on the island of Kauai. We spent a week in paradise, and it continues to be one of our most treasured memories together.

About half way through our tropical getaway, we drove to the northern most point of the island to Ke'e beach, and we embarked on a short hike. I can still remember the way the sun felt on my skin and how the dirt crunched beneath our feet as we climbed the trail. Soon we came to an open area of grass, rocks, and trees that provided us with a most magnificent view of the ocean.

I snapped a photo so we could remember this moment.


When we got home from our honeymoon, I printed and framed that photo. It quickly became a favorite, and it hung in our bedroom for many years. Every time we looked at it, it seemed to transport us back to that day where the weather was warm, the breeze was light, and the sound of the ocean was calm and comforting.

It was so perfect.

Eight years later, we would have a very different experience on a beach - one that would turn our lives completely upside down. One that would make us balk at the sound of waves crashing on the shore. One that would make us never, ever look at the ocean the same way again.

Jeff sustained a spinal cord injury on July 27, 2013 on the shore of Huntington Beach in California. And our life was catapulted in a new direction that day. We didn't know it at the time, but that abrupt change in our life's path would eventually lead us to finding another family whose lives are impacted by the same injury - one that happened in a similar way, but eighteen years earlier.

Glen Dick was injured in 1995 when someone playfully pulled him off a dock into the water. Like Jeff, Glen is a C4/5 quadriplegic. Nearly a decade after his injury, Glen met and married Monica. And a few years after that, their daughter Elaina came along.

Our families' lives intertwined when I met Monica on social media in 2017. And since then, we have gotten to meet up twice in real life, and we're planning to do so again later this year.

In the same year that we first met, Glen started a new journey of his own. He began to paint. Twenty two years after suffering a life-changing injury, he decided to put brush to canvas. Glen has some bicep movement in his arms, so he first started out by holding the brush in an adaptive cuff attached to his wrist. But because he doesn't have hand or finger function and therefore lacks fine motor skills, he wasn't satisfied with the paint strokes produced using this method. Then his art instructor suggested he try holding the paint brush in his mouth.

And that's when Glen became an artist.

He could now paint with dexterity and precision. He practiced his art, and Monica began sharing his work on social media. I was blown away by what I saw. I remember scrolling through several photos of Glen's paintings and showing Jeff, and we both looked at each other with "are you kidding me" expressions on our faces.

They were truly remarkable.

Here's a couple examples.

Bucks County Covered Bridge by Glen Dick
The Ghosts of St. Elmo Colorado by Glen Dick

So in early 2018, I had an idea. I knew Glen, Monica, and Elaina were coming to visit us later in the year, and I asked if we could commission a painting of our favorite photograph - the one I took on our honeymoon.

Glen agreed, but only on the terms that it would be a gift - a token of the friendship our families had developed.

Fast forward several months to the night they arrived. After initial hugs and settling in, we all gathered together and opened the painting.

I was trembling with anticipation. I knew it would be an incredible piece of artwork.

But it was beyond anything we expected.


It wasn't just the picture I'd taken thirteen years earlier. It was so much more. The texture, the colors ... they all popped making it seem like the trees were swaying in the breeze, and the ocean was foaming on the shore.

I remember looking at the painting and thinking - for the first time since Jeff's injury - I can finally see an image of the ocean and not cringe - not instantly think about the danger that lies beneath the blanket of waves - not have any negative connotations associated with it.

Glen even added some special touches. He included our initials on the rock in the foreground. And near the middle of the image, far out from the viewer's perspective, he added a person sitting on the rocks watching the ocean. He told us it was Jeff.

Glen added Jeff sitting on the rocks in the painting. Though this, he gave us both a new perspective of the ocean.

What an incredible gift we'd just received.

***

The painting now lives on our bedroom wall surrounded by photos of our family - some taken before Jeff's injury, and some taken after. We look at it every single day. And really, there couldn't be a better place for it.

Because when you or a loved one experiences a traumatic injury, your life - both literally and figuratively - fractures. There becomes a distinct "before" and "after."

When Jeff and I look at the photo I took on our honeymoon, all we see is the before. We see life from the perspective of an able-bodied couple on one of our best days: we were carefree, strong, independent. We see all the good and all the happiness our old life gave us - we see the convenience of a life without disability. And if I'm being extremely honest, we see a life we both miss immensely.

Our honeymoon - I snapped this selfie just after taking the original ocean scene photo.
But when we look at the painting Glen created for us, we see a much different scene. The before is still there, of course. But what we mostly see is the after.

We see a treasured moment of our life re-imagined by someone we might have never known if it hadn't been for the horrific injuries both Jeff and Glen endured.

We see a talent that blossomed only after tragedy struck, after all hope had been lost - twenty plus years, at that! We see that it is never ever too late to try something new.

We see a friendship with a family that mirrors our own in so many ways. A family whose experience in living this SCI life has helped push us forward in our new life - who has helped us see that even with a broken piece, the family unit can still thrive.

While I am not a subscriber to the "everything happens for a reason" philosophy, I do believe that good things can come from terrible tragedies.

And meeting Glen, Monica, and Elaina has been one of the best things that's happened to our family since we started this journey down our new path.

Me, Jeff, Monica, and Glen with the Painting

Our sweet girls not wanting to say goodbye!

***
If you'd like to see more of Glen's incredible artwork, learn about the motivation behind his paintings, and purchase prints of his art, please visit his website: https://gdick.artspan.com/home

In addition, check out the Mouth & Foot Painting Artists organization that Glen became a member of last year. You can find him under artists from Pennsylvania: https://mfpausa.com/

Lastly, enjoy these planning and progress photos that Monica shared with us as Glen created our one-of-a-kind treasure.

Initial drawing phase
First layers are almost done
Adding the final touches