Monday, December 23, 2019


As the holidays approached, I started thinking about what gift I wanted to get for Jeff. We don't usually make a big deal about gifts, but we always give one another our gifts early. We don't plan it like that; it's just kind of happened that way for the last 18 years.

Since Jeff's injury, I've focused on getting him items that help keep him warm. Quadriplegics are notoriously cold - it has to do with his body not being able to regulate temperature. He's already got every kind of beanie imaginable. And a couple years ago I got a him an epic scarf with a pooping moose on it. I wasn't sure how I was going to top that.

So I thought I'd go a different route this year.

I was searching Etsy one night for something that might be a good fit. Jeff's isn't overly sentimental - not by a long shot. So I try not to get him anything too overtly sappy. I thought maybe I'd search for something that symbolized how he's persevered through the last six years of his SCI journey. I searched for words like "determination" and "persistence" to see what came up.

And something caught my eye.

It was a print of a Finnish word along with the definition. I'd never seen this word before as evidently there isn't a direct translation in English.

Sisu: [see-soo] noun: a special strength and persistent resolve to continue and overcome in the moment of adversity; an almost magical quality ... a combination of stamina, perseverance, courage, and determination held in reserve for hard times.

It was perfect.

It was sold in a set with a necklace that had the word printed on it also. And the necklace came with a card with a further definition of the word:

Sisu is a Finnish word describing a reserve of power which enables extraordinary action to overcome mentally or physically challenging situations.

I bought the set - the print for him and the necklace for me. (I figured throughout the six years we've endured this life, I've exhibited my own sense of sisu at times as well. But this post isn't about my sisu. It's about Jeff's.)

The set arrived in the mail, and I quickly framed the print and wrapped both items up together and placed them under the tree. Evie saw the package right away (the kid has radar on new packages as they materialize under the tree). She asked me what it was, but I only told her it was a special gift for both me and dad, and that she would find out soon.

About a week ago, I was working on Jeff in the bedroom. He was in bed and wasn't feeling great. His stomach issues he thought he had under control were flaring back up. He was uncomfortable. And to escalate the situation, he was just having one of those off days. They happen sometimes. Where the heaviness of this life weighs you down. When you feel like no one understands anything of what you experience every day, every minute, every second. Where sometimes it's all just too much.

I got him settled, and I told him I would be right back. I ran out to the living room and grabbed his present from beneath the tree. Evie saw me and knew what I was doing. She asked if she could come in while he opened it. When I turned around, she could see the emotion on my face.

"Not just yet, Sweetie." I told her. "Daddy and I are going to open it together, then you can come in and see it." She nodded her understanding and gave me a quick hug.

I went back into the bedroom and held up the wrapped package in front of Jeff.

"I thought now would be a good time to give you this," I told him. We both smiled. We've never actually made it to Christmas without giving one another our gifts, and this year was no different.

As I unwrapped the gift, I explained that it was a little different from gifts past. I was trying to ready him for what I knew was going to be a gift that held emotional weight.

I crumpled up the wrapping paper and held up the framed print for him to see. I explained it was a Finnish word that had special meaning. And when I came across it, I immediately thought of him.

Then I read the meaning. Usually I can keep my composure with this kind of stuff, but my voice cracked as I read, and soon the words all melted together through my tears. Because as I read him the definition, I thought of all the times I'd seen Jeff exhibit sisu. All the times he'd pulled up a "special strength," "perseverance," and "courage" as he faced the most massive challenge of his life - one filled with an unimaginable amount of heartbreak, frustration, and loss.

I remember watching him mouth his first words to me after he was stable in the ICU when he asked if he would ever be able to hold our daughter again. And I witnessed his quiet resolve when he would have to come to terms with that answer being no.

I remember seeing his terror and disappointment the first time he saw a power wheelchair after his injury when he told me he didn't want to learn how to drive that thing. And I've watched as he's learned to expertly maneuver a power wheelchair, driving it with his chin. I've seen his confidence emerge when he navigates it in tight spaces, and his happiness return when he cranks it up to the highest speed and coasts down the street.

I've witnessed a transformation in him from not wanting to engage with any type of adaptive product in order to use technology to actively engaging his friends on his phone all while holding a 13-inch stick in his mouth which he uses with precision to peck at the keys.

And I've seen him go from a man who was convinced he would never again be an adequate father to a man who has figured out new and inventive ways to interact with his daughter again.

I know people love a good story about where a person with a disability eventually "overcomes" that disability - whether it's through actual healing and recovery or whether it's by giving that disability the proverbial middle finger and doing something sensational like climbing a mountain. All that is well and good if you've got the means and the physical function to make it happen.

But life isn't always about overcoming. Ours isn't anyway. It's been more about shouldering Jeff's disability and trudging forward with it on our backs while we navigate everyday life. That's at least what we've tried to do. That's most definitely what Jeff has done. It's something he continues to do every minute of every day. And it's a pretty incredible thing to witness.

I set down the print, wiped Jeff's eyes, and buried my face in his neck. I told him that I was proud of him. I told him he's a great father, an incredible husband, and always makes us feel loved. And I told him that as close as I am to his disability, I truly don't know what it's like to live like he does.

That even though I take care of him, ultimately I'm just like everyone else on the outside: I can't comprehend what it's like to not be able to move your body or your limbs. Not be able to feel when other people touch you. Not be able to reach out and hug someone you love. But even though I don't know what all that is like, I'm pretty sure it takes an incredible amount of resolve to face life after a devastating injury like his. I know that some days, some really hard days, Evie and I are the only two things in this world keeping him going. That's what makes us a team. And we're grateful he chooses to push forward with us.

After a few minutes, I opened the bedroom door and Evie came in. I was cleaning up a few things in the bathroom, and Evie went up to Jeff and asked what the present was. He directed her to our dresser where I'd put the print right next to our little cactus family I'd crocheted. He told her I framed a word that reminded me of him. She read it out loud quietly. Then she got out the step stool, set it up next to Jeff's bed, and wrapped her arm around his chest. She always gives extra long hugs when she knows emotions are running high. I was able to snap a photo of this special moment.

After she left the room, I stood by Jeff and wiped his eyes once more. He looked up at me, a mix of emotions on his face. "Do you know what most people don't understand?" he asked. "If I closed my eyes just now when Evie was hugging me, I wouldn't even know she was there. Nobody understands what it's like to not be able to feel your daughter hug you."

The heaviness of the moment lingered, but only for a second. Because then he blinked away his tears, adjusted his head, and said, "But I love it anyway."

And if that isn't an example of sisu, I don't know what is.

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."


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.


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.