Sisu

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.

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.

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

Self Reflections: Six Years as a Caregiver

Today is the day that looms large on our life calendar every year.

July 27th - the anniversary of Jeff's injury.

I've been tossing ideas around in my brain on what to write this year. I haven't been blogging as much the last 18 months or so, and I think it's mainly because we aren't experiencing as many firsts as we had in the initial years after Jeff's spinal cord injury.

We're kind of chugging along at this point.

I don't mean to insinuate that things are smooth sailing. In our experience that's pretty much never the case with an injury like this - or at least not the case for a long period of time. There's an enormous amount of work required to keep our family train on the tracks.

And as a caregiver, that's kind of my job description.

In looking back over the last six years, I started to reflect on how the experiences - the challenges as well as the triumphs - have shaped, strengthened, and changed me.

I found some old photos recently - some just prior to Jeff's injury - and when I look at them, I feel I hardly recognize myself.

This photo in particular caught my attention. It was taken about six months prior to Jeff's injury. We were visiting his parents in Las Vegas and were in the greenbelt area of their housing community - the same community we would relocate to just a couple years later. Our daughter Evie - a cute little three-year-old back then - snapped the photos of us. It was one of the first she took that wasn't blurry and didn't cut off our heads.

I look at our smiles and all I can think is, "My god, we had no idea what was coming."

If I had been told then that before I turned 40, I would become the sole caregiver to my paralyzed husband - that I would be responsible for all of his care: bathing and dressing, feeding and personal care, assisting with all bodily functions and maintaining all of the artificial means to keep him alive, I would have said I couldn't do it. There's no way I could handle all that.

But I would have been wrong.

Because it turns out that I can handle all that. And more.

In my self-reflections of the last six years, I think the main thing I've learned about myself is what my true limits are. And while I've certainly discovered a number of things I cannot handle - or perhaps a better way to say it is what I will no longer tolerate given the stresses and demands of this new life - I've learned that the limits of what I CAN handle - what I CAN accomplish - are far greater that I had imagined.

Caregiving requires an exceptional amount of self-sacrifice. And I'm not just talking about things like sacrificing a few hours to spend time doing something you HAVE to do instead of something you WANT to do. I'm talking sacrifice on a whole different level. I gave up my career for caregiving - my immediate income, benefits, and 401k contributions came to a screeching halt. My future retirement income has been stunted. My family's economic stability has been tipped on its side in exchange for me morphing into the role of a caregiver. Jeff and I made this heavy decision together because we felt it was the best way for him to get the proper care he needs to live day to day - and the best way to keep our family moving forward.

It's been a necessary sacrifice, and it's worked for us.

Caregiving has been an incredible teacher for me. And not just the kind that's built me up. Yes, it's taught me confidence - I've learned I can speak up to medical professionals and advocate for my husband's needs, and that I know A LOT about what those needs are. Caregiving has also enhanced my level of responsibility - both to my family and to myself. It's taught me to balance the care I provide for my husband and my daughter with the self-care that is so important for caregivers - and to do it responsibly and practically. (As much as I'd love a week long vacation of doing absolutely nothing, that kind of self-care isn't possible in my world, so I've learned to create me-time within the parameters of this life.)

But caregiving has also given me a heck of a beating. It's piled the duties so high that they've smothered me. And truthfully, there have been moments - days even - when I have hated this new life. I've said it to myself between sobs while hiding away in the bathroom. I've muttered it under my breath in frustration while trudging from one task to the next. And I've even said it out loud - to my husband - when the heaviness of our world is crashing down around us: "I hate this life! I. Can't. DoThis!"

But once again, I am wrong.

Because perhaps the most important thing caregiving has taught me is the importance of persistence. I CAN do this. I DO do this. And I'm going to KEEP doing this for as long as it takes.

Even when it's hard.

Even when I hate it.

Even when I think I can't do it anymore.

I can.
...

So we're six years in, and I think we've finally found a comfortable spot in our new life. And right now, we're okay with comfortable. Self-help articles will tell you that getting comfortable in life will stunt your personal growth, but I disagree. It's taken an incredible amount of change - a metamorphosis of sorts - to get us to where we are today.

And right now - today - is a good day.

Because any July 27th that doesn't involve a broken neck is a good July 27th in my book.

The Backup

A couple months ago, I took these pictures of Evie providing care for Jeff when she participated in “take your child to work day” for school. She stayed home from class that day, and together we took care of Dad. We made and fed him breakfast. We did breathing treatments, and trach care, and changed the circuits on his ventilator. She even watched me change the dreaded colostomy bag – because the stark reality of caregiving is often having to do a lot of yucky things.

Evie has taken part in Jeff’s care since the beginning – that’s just kind of how it is when you have a family member that requires 24/7 assistance. As she’s gotten older, she’s been able to understand and handle more complicated tasks. And aside from a couple more intimate tasks like changing a catheter or cleaning certain areas of the body, she’s helped or at least watched me do almost everything there is to take care of her dad.

We’ve never hidden what is involved in taking care of Jeff from her – and that’s partly because she’s the closest thing to a backup caregiver that we’ve got.

As a solo caregiver to someone who needs full assistance, one of my biggest caregiving fears – besides something bad happening to Jeff – is something happening to me where I’m not able to care for him.

I haven’t been feeling the best lately. And it’s gotten to the point where I need to seek medical advice. From my symptoms and the research we’ve done, we think there might be something amiss with my gallbladder, but without medical tests we can’t know for sure. Jeff and I have been trying to approach this with a level head – which can be tough sometimes when we get caught up in “what if” scenarios. We’re hopeful that the pain can be alleviated with minimal time away for me. But we have to be prepared for me to be away for more than a few hours should I end up needing surgery.

And thus why the concept of a backup caregiver has been on my mind lately.

But here’s the hard truth about that: In family caregiving situations like ours, there are no understudies. No one waiting in the wings who is shadowing me. No one fully trained to provide the detailed, complex care I perform every day. So the thought of me being out of commission is terrifying.

Yes, we have our amazing 10-year-old daughter who has stepped up to the plate and has proverbially hit it out of the park with her competence in the tasks she’s learned and performed. But full-time caregiving brings with it a weight of responsibility that is not fair for a young child to shoulder.

We’ve reached out to Jeff’s parents for additional help above and beyond what they already provide for us. I’ve trained them in some more in-depth tasks that will help keep Jeff healthy and thriving should they need to step in for me.

I really hope it won’t come to that. Honestly, we’re all hoping it won’t come to that. But being prepared is just another aspect of what being an effective caregiver is all about.

So I will say with honesty that the day Evie stayed home to help take care of Jeff, I had more on my agenda than just “showing” her what I do all day. I made her do tasks herself, even when she was hesitant or a little nervous. Because that’s how I was taught. And the only way we master is by getting in there and doing it.

Ask any caregiver for a wish to be granted, and I can guarantee the majority of them would wish for the same thing: a clone. But since reality hasn’t caught up with science fiction yet, the next best thing is our back up.

And right now, Evie’s okay with being the backup. In fact, she takes pride in it. There’s not a lot of other kids her age who have the knowledge and skill she does when it comes to taking care of another human being.

She’s got a big role to play in our family. We depend on her – sometimes heavily – to handle some pretty complex tasks. And she does an incredible job.

She’s one amazing backup.

Caregiving and ... : When Caregiving and Life Collide

When I was learning how to take care of Jeff, learning how to be a caregiver, all of my initial lessons were at Rancho los Amigos, the rehab hospital Jeff was at for 5 months. During that time, I learned so much. I gained an incredible amount of medical knowledge in a short span of time. I learned how to move a paralyzed body without hurting my own. I learned about catheters and trachs and skin breakdowns and side effects ... and I learned it all in a bubble. The bubble of the hospital.

So once Jeff came home, and I was able to put my newly acquired skills to use, I quickly learned about a new aspect of caregiving that I hadn't readied myself for. It's something I've termed "caregiving and ...."

While the caregiving tasks themselves were certainly challenging and demanding, it wasn't until I had to re-incorporate other aspects of my life into the caregiving routine that things became truly overwhelming.

When we were in the hospital, I was mainly focused on the hands-on care. But now that we were home I was faced head on with caregiving and ...

caregiving and parenting
caregiving and being a spouse
caregiving and working
caregiving and cooking
caregiving and cleaning
caregiving and being a daughter
caregiving and being a friend
caregiving and taking care of myself
caregiving and managing every aspect of our life

It was all so much.

Too much, sometimes.

The first couple months Jeff was home were among the most challenging for me while I learned to incorporate caregiving into everyday life.

Over the last six years, we've made adjustments to our life and fine tuned our schedule, but like any caregiving situation, especially a spousal caregiving arrangement, sometimes things pile up and fall by the wayside.

And one of the things that's fallen further and further down the priority list for us has been range of motion exercises. Since Jeff can't move his body, he has to have somebody move it for him, particularly his arms and legs. Like anything with joints - a body, a machine - if the joints aren't moved, they freeze up. And that can cause a lot of problems, and pain.

I was taught how to range Jeff's limbs when we were in rehab. The exercises aren't difficult to administer (though I will say that paralyzed legs are a lot heavier than you'd think), but they are time consuming. And time is something I tend to run short on.

We've turned to Jeff's dad for help with ranging Jeff's arms, and he comes over twice a week to do that. It's super helpful, and he does a great job. And Jeff feels the positive benefits from it. I try to keep up with ranging the legs and some additional arm ranging, but the truth is, most of the time there's more pressing items to tend to. And if it's not something we've mindfully inserted into our daily routine, it's often forgotten.

So when Jeff's nurse practitioner came to visit him after he'd been released from the hospital just a month ago, she told us that he was eligible for some home health visits, which included physical therapy. Normally Jeff's insurance doesn't cover therapy of any kind, but if you've recently been hospitalized, there's a window available for some temporary help.

And we've learned that when help is offered, you take it.

Jeff and I were really looking forward to the sessions because it would mean getting two things done at once, which is a rare treat in our world. Jeff would be getting care, and I would be free to finish up some things around the house.

The first therapist arrived and proceeded to ask the "getting to know you" questions required for onboarding a new patient. He asked about Jeff's injury, his pain, his medications, etc. Then he asked about physical therapy, particularly therapist-assisted range of motion he's had in the past. We told him that since Jeff's initial stay in rehab after his injury, he hadn't had any formal therapy.

Then came the million dollar question.

"And your wife can't do this, why?"

I was still in the room, so I answered. "I do, but I'm not able to do it enough. He's got a lot of other things going on that I handle, and most of the time those take precedence." I gestured to Jeff's ventilator in an attempt to subtly point out what I feel is an obnoxiously obvious indicator that my husband has medically complex needs.

I know the therapist had to ask the question for documenting purposes. But it just didn't sit right with me. I left the room as the therapy session got underway and tried to put the question out of my mind.

A couple days later, another therapist arrived at our house. Another round of questions, and - you guessed it - another humdinger.

"So you aren't able to do range of motion for your husband?" The question was directed at me, but this time Jeff answered. "My wife is my full time caregiver. She knows how to do all of the range of motion on me. She's been fully trained. But there's a lot of other shit she has to do with me. Plus she works part time. And she takes care of the house. And she's raising our 9 year old daughter. So she's pretty damn busy. We just need some help with this so she has a little bit of time to do some other stuff."

Jeff wasn't angry when he spoke. He simply laid it out.

Later that afternoon, hours after the therapist left, I finally let out the tears I'd been holding in. I was getting a fresh roll of paper towels from the garage when they hit. I stood there on the wheelchair ramp that spans the gap from the laundry room into the garage and shook my head as the tears fell. The frustration, the anger, the humiliation all came forward at once.

As a solo full-time spousal caregiver, I am often met with people and articles telling me that I can't do this alone. That I need help. So when I do finally reach out for help with an aspect of our life, and instead of help I'm met with a response of, "Why can't you do this?" it's so entirely defeating.

Jeff and I canceled the physical therapy sessions. They were only temporary anyway, and we were't likely to be granted many more.

While I certainly don't think that either one of the therapists meant for their questions to paint me in a negative light, I also don't think they were aware of how questions like that can negatively impact someone who is putting all the time and energy they have into taking care of everyone else. Someone who is worn out. Someone who is constantly trying to maintain the delicate balance of caregiving and life.

Jeff and I are still trying to figure this one out. It truly is a constant tweaking of the scales. And as hard, frustrating, and overwhelming as it all is, I am so grateful I have Jeff in my corner. That I have a partner who, while lying in his hospital bed, stands up for me. A partner who sees the demands that tug me in every direction. A partner who knows I'm doing my best to juggle the challenges of caregiving and ... .

This photo was taken a few days after Jeff came home from the hospital following his injury.
I was just starting my journey of learning how to juggle the demands of caregiving and life.

The Caregiver's Education

Before my husband's spinal cord injury, I was - what you might call - book smart. It's a self-imposed label I apply to the years in my life that led up to July 27, 2013 - the day my husband became a quadriplegic. The day that one period of my life ended, and a new one began.

When I first met Jeff in 2001, I had just completed a master's degree and was teaching English at a community college. My degrees combined with my experience in working with words landed me a job at a legal publisher where I worked for the next decade. That experience of creating documentation led to my next career as a technical writer. All in all I was happy with how my job experience had progressed. My resume flowed logically from one position to the next. I could say with confidence that as a teacher, an editor, and a writer, I was using my education and building a solid foundation of employment history.

On July 26, 2013 I had a good job. I was making good money. I was contributing significantly to my family's security, and I was stashing away funds for retirement.

On July 27, 2013 I was standing at the foot of an ICU bed watching doctors and nurses intubate my paralyzed husband. And in that moment, none of the education, none of the work experience I'd built up over the prior 15 years ... none of it mattered.

It was as if Jeff's spinal cord injury had just deleted all of the carefully worded bullet points on my resume.

CTRL+A, DELETE

It was time for a new education.

But this learning experience wasn't in a classroom. And it wasn't about hypothetical situations I might encounter in the future.

It was hands on, and it was happening right now.

Because family caregivers like me don't take semester-long courses on how to become a caregiver. We become caregivers the moment our loved ones are injured. Sometimes we don't even realize at first that we've stepped into this role. Most of the time we don't even have a choice.

I can remember a physical therapist showing me how to stretch Jeff's legs just a few days after his injury. I can also remember wondering why she was teaching me how to do this when it was her job. I didn't realize back then that she was training me to keep my husband's legs limber because in the long haul, this would in fact become my responsibility.

A few months later, my formal training would begin while Jeff was in rehab. I was taught how to clean and change my husband's trach. I was taught how to flush his catheter. I was taught how to transfer him from a bed to a wheelchair and back again. Doctors, nurses, and therapists were my professors, and they all gave me passing grades so I could graduate.

My first true caregiving job started in mid February, 2014 when Jeff came home from rehab. The EMTs wheeled him out of the ambulance and transferred him into his bed. The respiratory therapist made sure the ventilator was working properly.

Then everybody left.

It was like bringing home a newborn and suddenly realizing that YOU are in charge, but you're not entirely sure you know what you're doing.

And while that may have been the day my new role as a caregiver formally began, my education was really just starting to ramp up.

I learned that caregiving isn't just hands on. It's also about advocating for your loved one to get the medical care he needs. It's learning how to communicate with medical supply vendors and insurance companies. It's understanding there's a major difference between Medicare and Medicaid and which one - maybe both - your loved one qualifies for and how that will impact your life.

And the troubleshooting - oh the troubleshooting. It ranges from deciding how to fabricate a stylus holder out of medical tubing, zip ties, and adhesive velcro to figuring out, in a panic, the most efficient way to get urine out of my husband's bladder during a life threatening episode of autonomic dysreflexia. Truly, sometimes I feel like my life has become a combination of Mythbusters and Untold Stories of the ER.

But thus is the life of a caregiver.

When I was in college mapping out the different ways my life and jobs might go, this caregiver gig wasn't even on my radar. And now that I'm five years into this new life, I admit that it's hard to look back at my old life at the years I spent learning, preparing, and working just to be forced to drop it all and start over.

But the last five years have more than rounded out my book smart years. I've discovered that education doesn't just come in the form of letters after your name. That real life experience - I'm talking the stuff that fractures you and drags your broken self down the path of life - is one hell of a teacher. And that like in my old life, I am still continually learning.

So while the skills I've acquired in my new role as a caregiver - like efficiently changing bed sheets with someone IN the bed, expertly dealing with all matter of bodily fluids, and gently wiping away tears on days that are just too much - might not be impressive to a traditional employer, I happen to know a guy named Jeff who is very much in need of someone with these skills.

And he'd hire me any day.

The early caregiving days. I was smiling, but I was scared to death.

A confident and experienced caregiver. I'm lucky to be able to take care of this guy.