A New Perspective

I've written about perspective before, specifically how living with Jeff's spinal cord injury has opened up an entirely new perspective on life for us.

But I've recently experienced another new perspective that I wanted to share.

Last month, just ten days into the new year, I received news that I would put into the category of; "a caregiver's worst nightmare." 

I was diagnosed with breast cancer.

Quite suddenly, I had become "sick." Of course I physically felt fine, but I was now aware that there were cells in my body that were not fine at all. And I would need surgery to remove them. And I would need time to recover. And I would need help.

All I could think about was how am I going to take care of Jeff when I need care myself?

The rest of January was a whirlwind of medical appointments for me followed by a couple weeks of waiting for pieces to fall into place. During the waiting period, I joined an online support group and walked a fine line between doing the right amount of research to educate myself while being cognizant of not going down the virtual rabbit hole of doom.

By the time I met with my surgeon in early February and knowing the tumor in my breast was on the larger side, I was prepared for her recommendation: mastectomy.

Of course it's not at all what I wanted to hear. I wanted her to say the tumor had magically disappeared, that I wouldn't need surgery afterall, and I could just go back to being my husband's caregiver and taking care of my family. But that didn't happen. Instead, she explained the surgery to me, told me what to expect physically afterward, and when I told her about my caregiving responsibilities, she told me that's something I would definitely need help with - for a few weeks at minimum.

When I got home, I shared the news with some close loved ones. And they all asked me the same question: how do you feel about this?

And as I wrote back to them, I found myself saying the same thing over and over - that the last decade of living with Jeff's injury has given me a different perspective than most. I explain it in a response to my dear friend Shannon who has given me permission to share (my comment is in blue):

Here's where I write about my perspective: ... I think I just have a bit of a different perspective than most. If Jeff can continue on with life being paralyzed from the neck down, I can certainly do it with one breast! Our struggles have given me strength I don't think I would have had otherwise.

But that's not the perspective this post is about. 

Here's the rest of our conversation:

Shannon writes: I'm so proud to be your friend with what you've done with your life.

What?? Her words touched me deeply - and also completely caught me off guard. 

What did she mean "what I've done with my life"? Because from my perspective it really seemed like life was the one doing stuff to me - not the other way around. I explained as much in my response:

I so often feel like I haven't done much or enough with life because it hasn't turned out the way I wanted or the way I planned. But your words are a reminder that life can still be meaningful and special even if it isn't the life you always wanted.

And then she dropped the REAL perspective:

What you do is endlessly meaningful because it impacts so many.

And just like that - bam - Shannon let me have a little glimpse of how others see me, see how I - how my family - has dealt with catastrophic challenges and how that's meant something to others. 

She gave me a new perspective and reminded me that not just what I do, but how I do it, is important.

****

My surgery is scheduled for Friday, February 17th - one day after my 47th birthday. I never thought I'd be celebrating a birthday in my 40s by having my breast removed due to a cancerous tumor. But then again I also never thought my husband would be paralyzed just before his 40th birthday, and we would spend the next 10 years rearranging our life to accommodate his injury.

And I would be lying if I said I wasn't nervous. I am. Waves of anxiety wash over me as I think about the surgery, the cancer, the care, the treatment, the healing, the ... everything. There's a lot to think about and process.

So even though we don't have all the details worked out for Jeff's care after my surgery, we do have family who is willing to help, friends who have offered support, and a decade of hard core troubleshooting skills to draw strength from.

And of course that little thing called perspective that helps keep us going.

Caregivers, I See You

November is National Family Caregiver's Month, and it's been a while since I've written about caregiving, so I wanted to take a few minutes to do just that.

Family caregivers aren't "professionals" per se. While many of us have the skills that only years of experience can provide, most of us didn't choose this role. We're simply family members who have rearranged our lives to provide care for our loved ones.

We carry the weight of our family's needs on our shoulders. Our loads are unbearably heavy. And sometimes we drop it all over the place. But we always gather it back together, find a way to pick it all up again, and somehow carry on.

Everyone tells us we are the strongest people they know - and we are. Even at our weakest. Simply because we must be.

Everyone sees us as these solid figures supporting our loved ones ... but that's really just the first layer.

If you are a family caregiver, I want you to know that I see more.

I see the way you care for your loved one just so, so you can make them as comfortable as possible even if you can't take away their pain.

I see your vast knowledge of your loved one's condition, the way you know exponentially more than any medical professional overseeing their care.

I see you expertly connect tubes, administer injections, and handle all matter of bodily fluid with grace, and without hesitation.

I see the way you've learned to navigate a broken healthcare system to get your loved one the services and equipment they need.

I see all the hours of work and sweat and planning that happens just so you can get your loved one out of the house.

I see the way you smile sadly at the photos your friends post during the summer of their perfect families on their perfect vacations.

I see how you never sleep, not deeply, because you have to be ready to jump into action when needed. And you're always needed.

I see you struggle with self-care because sometimes the thought of taking care of one more person is just too much, even if that person is you.

I see the way you step away from it all and take a moment for yourself in the closet or in the bathroom and let the tears fall.

I see the way you step back in, exhausted but capable.

I see how caregiving consumes you because it demands so much of you.

I see that there's more to you than caregiving, and when you take a little bit of time to reconnect with your own passions I see the joy it sparks.

I see your gratitude, your tears, your heartbreak, your laughter, your anger, your relief, your exhaustion, your frustration, and your deep, unflinching love that all make up the impossibly difficult thing you do called caregiving.

I see you because I am you.

And I want you to see you too.

***

Family caregivers often take a backseat role when a loved one's injury, illness, or disability is on center stage. But we're often the ones making it all happen behind the scenes. Keeping the production moving forward. 

Afterall, the show called life must go on.

If you know a caregiver - whether they are new to caregiving, if they're in the thick of it, or if their caregiving days have passed - please share this. 

Let them know you see them.

Nine: A Year of Powder Blues and Sunshine Yellows

Anxiety always runs high this time of year. 

Even though it's been nine years, I can still so clearly remember the awfulness of that day - July 27, 2013 - the day that started out so perfectly with friends at the beach and ended so horrifically with my husband in the ICU ...

paralyzed from the neck down,

a machine breathing for him.

I'm grateful to have tacked on another year and moved further beyond that day, beyond that first year when everything was so new and so frightening.

And while life is still overwhelming - living with a complex medical condition that requires a constant high level of diligence and care will do that - I'm incredibly proud of how far we've come since those early days when there was nothing ahead of us but despair and doubt that we could ever make a life from the ashes of such devastation.

Year nine has been a mixed bag. 

The lows were very low. Multiple hospitalizations revolving around Jeff's recurrent intestinal infection have frustratingly led to only temporary fixes, not long-term solutions. And when the infection is raging, it's painful for Jeff and frightening for us both. Finding medical personnel who have that magical combination of being both able AND willing to help us with the logistics of navigating a system that isn't built for someone like Jeff has been utterly disappointing. Forward progress is slow on good days and grinds to a halt most other days. We've tried so many avenues and have met many dead ends. And that leaves a heaviness that often doesn't show on the outside, but weighs heavy on the inside.

But if there's one major theme that's constantly run in the background of our life the last nine years, it's the importance of being resilient. How, even through the most frustrating circumstances, we have to find a way to keep moving forward.

So we do.

And that brings me to the highs.

Year nine has surprised us with something new.

Something fun that has helped infuse our days with smiles and laughter.

It all started with a doll ...

Everyone who knows our family knows we love the Chargers. Jeff was born into the fandom, and I became a fan after we met. Last year for Jeff's birthday, I crocheted a doll for him of Chargers quarterback Justin Herbert ... and well, things just kind of snowballed from there.

In a very good way.

Lil Herbie became popular with other Charger fans, and I began making him available through my Etsy shop. Then I joined Twitter where I met a whole slew of fans - collectively known as the Bolt Fam - who are an amazingly supportive community. Some have even become our close friends.

Lil Herbie was soon joined by a few teammates, and incredibly, with help from the Charger community, I was able to get some of the dolls to the players themselves! And I've received hundreds of photos of fans who have received their dolls - taking them to games, taking them on vacation, making them part of their families. All with the sweetest, happiest, most heart-felt messages.

Our family was even featured on an episode of Mills on the Mic, a podcast hosted by the Chargers 2021 Fan of the Year Jen Mills. The highlight of the episode is when Jen showed up at our house with former linebacker Shawne Merriman, giving us all the surprise of a lifetime!

This venture - this something that started out so small for the sole purpose of making husband smile - has turned into this beacon of happiness for all of us: me, Jeff, Evie, even my in-laws. Everyone is involved in some way to help give the Lil Bolts life. 

But really, it's the other way around. 

Because the Lil Bolts are the ones who have opened up life for us. A new door, set ajar, to let the sunshine in on a life that can often be consumed with shadows. The Bolt Fam community has embraced us and has given us something new.

For Jeff, it's given him a level of joy that helps to counterbalance the heaviness of being the one whose needs put an inordinate amount of stress on our family.

For me, it's given me purpose beyond the grind of being the engine who powers our impossible life.

For our family, it's given us something fun, something exciting to look forward to. Whether it's planning silly videos to make or designing the next player's doll.

It might not sound like much, but - my god - my family needed this.

And we are so grateful to have it.

***

I was recently thinking about my Etsy shop name, Yeti or Knot. It's a play on words, a fun little twist on the phrase "Ready or Not." Jeff actually came up with it a few years ago when I reopened and rebranded my shop. And it's perfect because I make fun, whimsical items, and the Lil Bolts fit in so nicely there.

But it's also perfect because - ready or not - life hit us head on (pun very much intended) on July 27, 2013. 

And honestly, I'm glad we weren't ready. 

I'm glad we didn't have a warning.

Because if we would have somehow known what was in store for us, we would have said we couldn't do it. 

We would have said there is no way Jeff could face life as a ventilator-dependent quadriplegic. And there's no possible way I could take care of him and all his high-level needs for the rest of his life.

But guess what ...

it turns out we can.

***

Thank you to everyone who has supported our family over the last nine years. 

We don't do this life alone. 

xoxo

The Sachs Family - Kristen, Jeff, and Evie

Jeff with Lil Herbie - September 2021

Fall 2021

Winter 2021

In the hospital - Feb 2022

Spring 2022

Shawne Merriman's surprise visit - Spring 2022

Nine years
(that's 9 years injured, 21 years together)

All the Chargers players who have received their dolls
(who I have pictures of!)
Derwin James, Keenan Allen, Austin Ekeler, and HOF legend Dan Fouts!

Less is More

It's been almost two weeks since we came home from Jeff's most recent hospital stint, and his recovery has been slow. He hasn't even felt good enough to get out of bed and into his wheelchair, and that's taken a toll on all of us.

We've been through a lot of rough patches during our time living with Jeff's spinal cord injury, and this is one of the tougher ones.

I feel numb, like I'm just alive to try to make him feel better, but nothing I do works. And when these patches crop up in our life, I find myself wanting more.

I want a better life for us. I want something different for us. Something happier, something easier.

 Something that isn't this.

I was thinking about it in depth last night, and after some self inquiry, I discovered that while I might think I want more, what I really want is less.

Less pain for Jeff. Less worry for me. Less time alone for Evie while mom is busy tending to dad. 

Less heaviness for us all.

Because less of all that would mean more life for us.

More time to spend outside. More smiles to share.

More living.

People often tell me how strong I am when they hear our story and how I've taken care of Jeff for the last 9 years. But the truth is I've been hunched over crying in the bathroom alone lately because this is all just too much to handle. Right now it's just piled too high. 

More than once over the last several weeks, Jeff and I have looked at one another with exhaustion on our faces and tears in our eyes from the constant toll of trying to get to a better place and have said quietly to one another, "This is no way to live."

What we need is a little less.

I haven't blogged much lately because this feeling isn't new. It's not always present, and not always quite so heavy, but it's always there. And whenever I write about heavy stuff, I inevitably get comments from people who seem to have all the answers at their fingertips.

You need to get someone to help you. I'm sure your insurance would cover caregiving for someone like Jeff. It won't. We've checked.

You need some time away. Why don't you just go to a nearby hotel for a weekend to recharge. Great idea. Do you want to come take care of my husband while I'm away?

Everyone has an easy peasy solution when it's not their problem to solve.

And while I always strive to maintain a positive attitude even in the face of so much adversity, I am sick to death of seeing bullsh*t sayings like "The only disability in life is a bad attitude."

I get the meaning, and it's probably a little more applicable to someone who has the ability to achieve even the smallest level of independence. 

But really?? Try saying that to my husband's face.

My husband, who relies on everyone else for everything he needs. My husband who depends on a machine to breathe for him. My husband whose privacy is non-existent because he can never be left alone. My husband who will live out the rest of his life unable to touch his face or feed himself or hug his wife and daughter.

He's supposed to just slap on a smile and his disability will melt away?

F*** that.

Even people with the best attitudes and outlooks on life have dark days. 

And right now the days are dark for us.

This isn't one of my happier blogs. It's not a good example of picking myself up from the depths of despair and trudging forward. It's not a reflection of how you can get through any situation with a positive mindset.

But my god it's truthful.

We've been through the darkness before, and we know there's light somewhere ahead. Even today I went outside for a few minutes to put my face in the sun and soak up a little Vitamin D the old fashioned way. And it felt good. 

And that's what we need. 

Less darkness. More light. More warmth to feel good again.

It's coming. I know it.

Lil Herbie and His Shopping Cart

If you're a fan of the Los Angeles Chargers, you might have heard about one of quarterback Justin Herbert's pet peeves: abandoned carts. I'm not talking the virtual kind. I'm talking about the real, physical shopping cart that people push out of stores, unload the contents from into their vehicles, then oftentimes ... just leave right there in the parking lot - or push into those striped lines next to the accessible parking spaces thinking it'll be out of the way (it won't - and I'll get to that in a minute).

In an article for ESPN, analyst Mina Kimes wrote about a time that Herbert's teammate Gabe Nabers saw his usually low-key quarterback's temper flare while they were out shopping. Nabers was manning the cart, and after they'd unloaded their goods, he gave it a gentle push, planning to abandon it in the parking lot. The story goes that Herbert addressed the abandoned cart issue and told Nabers, "No. Take it all the way back."

This story was eaten up by Charger fans - my family included - highlighting another reason to love our new quarterback. He does the right thing - the decent thing - and helps to make sure his teammates are doing it too.

And if this story doesn't make you love this guy even more, then I seriously question if there's a heart beating in your chest.

But beyond the fact that it's the right thing to do, I liked this story - and more importantly this characteristic in our young leader - for another reason.

Abandoned carts are a big deal in the disability community, namely for wheelchair users. And my family happens to be a part of that community. My husband Jeff sustained a spinal cord injury in 2013 and now uses a wheelchair. 

I'm the driver in our family. My husband doesn't have arm function, so he sits in the middle aisle of our accessible van in his power wheelchair. I can't tell you how many times I've tried to park in a space, only to have an abandoned cart in the way.

I'm going to be super honest here. Since I'm able bodied, this type of thing - while frustrating - falls more into the "inconvenient" category for me. Because I can hop out of the car and move the cart.

But I know so many wheelchair users who drive their own vehicles using adaptive controls. And when they encounter an abandoned cart in their way, what is inconvenient for an able-bodied individual simply becomes impossible for them. They don't have the option of "hopping out of their vehicle" to move the offending cart. 

Wheelchair users who drive have vehicles with ramps so they can enter and exit. And oftentimes those ramps are located on the side of their vehicle making it impossible for them to park in a regular spot, hence why they must use an accessible parking spot - the ones I mentioned previously with the striped lines - they're called hash marks - like in football. And like in the sport, they're there for a reason - in this case, to make it possible for wheelchair users to access their vehicles safely.

But what if there's an abandoned cart in those hash marks? What if that cart makes it impossible for a wheelchair user to deploy their ramp and exit their vehicle? What if the hash marks that are often in between rows of cars leading to a store entrance are littered with abandoned carts blocking the path for wheelchair users who can't simply roll around them?

I think I've asked enough questions at this point to drive home my message.

Abandoned carts are a big deal - a huge one really.

So when I saw Justin Herbert's stance on them, it made me like him even more.

I've recently crocheted a Justin Herbert doll for my husband for his birthday, and he's become somewhat of a sensation among Charger fans. It's not something I anticipated, but I've embraced it. People love Lil Herbie because people love the real deal. And it's been a blast to share Lil Herbie's adventures on social media.

I was reminded of the cart story this week from a comment on Twitter, and it prompted me to see if I could find Lil Herbie his very own shopping cart. Amazon came through, and now Lil Herbie stands proudly beside his cart. The cart he's returning. The cart he's pushing back to the store or to the designated collection areas in the parking lot.

It stands next to him as a gentle reminder that taking a few moments to do the right thing - the decent thing - doesn't just benefit you, it helps others as well.

The Sunflower and the Cactus - 8 Years Living with a Spinal Cord Injury

Back in early spring of 2013, we decided to spruce up our backyard. We bought heavy bags of wood chips that Jeff heaved in from the garage and spread underneath the trees lining our little enclosed backyard patio. We also bought two wooden planters that we filled with soil. And I can remember kneeling down with little Evie, who was still in preschool and going to turn 4 soon, and we planted sunflower seeds.

We'd never planted anything before, so we were very excited to watch the sunflowers grow. Evie's patience waned, but I was diligent in checking on those flowers. When the buds started to peek through the soil, I called Evie out so we could ooh and aah at nature sprouting right before our eyes. Within a couple months, we had pretty good size stalks, and by summer, we could see that the flowers would be opening soon.

I would check them every single morning. 

Then one day, July 25th to be exact, one of our sunflowers burst forth. It was almost entirely open, with just a few petals that still needed to stretch out. I snapped a photo before I left for work that day, and I posted the image on Instagram with the caption: "Our sunflowers are starting to bloom!" I was so excited.

Two days later, we went to the beach with friends, and Jeff was paralyzed diving into the ocean.

And just like that, I never thought about those sunflowers again.

In the blink of an eye, everything, every-thing changed. What used to be important to us, what used to make us happy, no longer mattered. We were handed a new set of responsibilities to prioritize that day, and that list definitely didn't include growing sunflowers.

I remember going out in the backyard a couple weeks after Jeff's injury, when I was home briefly with just enough time to shower, pack new clothes and grab some food before heading back to spend another impossible night with my husband in the hospital. I walked out the back step and looked around. Everything seemed so bleak in the waning light of the evening. It was like all the joy had been sucked out of what used to be a place filled with life. Our life. A place where just a week prior, we'd hung twinkling lights on the canopy. Where Jeff had meticulously run a cable from our bedroom out to the patio and connected it to a TV in preparation for watching football while he grilled us dinner. A place where Evie chalked sweet figures on the concrete and ran through the sprinkler giggling.

I turned to see the sunflowers, and they were all wilted, bent over, dry. Completely dead. I didn't even try to salvage them, which would have been impossible anyway. But more than that I remember thinking what's the point? I'd already learned that we'd need to move as soon as possible. The condo we rented wasn't anywhere near accessible for the wheelchair Jeff would need to get around. All of this - all the stuff in our backyard - would need to be stored or sold. It was too much for me to mentally wrap my mind around in the moment. I stepped back in the house and closed the door on our old life.

Because that's what that sunflower was - our old life. Days before everything changed, it was all going so good. Jeff and I had great jobs, we had a happy, healthy daughter, we had friends we hung out with on evenings and weekends, we had everything.

But now that life was gone. 

Yet somehow, through all the difficulty and challenge, we've managed to grow a whole new life. 

Year eight hasn't been easy, which has honestly been a surprise for me. You'd think that having eight years of SCI life under our belts, we'd be pretty good at it. And we are. But this year presented quite a few speed bumps. Last summer Jeff developed a pressure sore which kept him in bed for seven months, and turned me into a wound nurse. Those months of bed rest and constant wound monitoring were very difficult for us both. Jeff missed every holiday last year, just like he had the first year. Evie and I decorated for Halloween, Thanksgiving, and Christmas, and he didn't see any of it in person. And the stress of the wound and so much of the healing responsibility belonging to me almost broke me. It certainly caused me to hit an all time low as a caregiver, which I'm just now climbing out of with the help of some self-care and self-reflection on the stresses I've had to carry the last eight years.

Through all of the ups and downs, the one thing I can honestly say that hasn't disappeared from our old life - the one thing that has actually grown stronger - is the love between me and Jeff. I am so thankful for who he and I are together. How we have pushed through even the darkest of days to find light again. How we've refused to let a shitty situation destroy us.

Sometimes I think about our old life - that sunflower - how beautiful it was, and how we'll never have that again. But I'm quickly reminded that there's still beauty to be found in our new life as well. 

Just this past spring, Evie and I tried planting seeds again. We'd picked a spent flower from a barrel cactus and opened it up to find hundreds of seeds inside. We planted several in the front yard and in the back yard. And even a few in little pots that we put on the windowsill in the kitchen. And just like the sunflowers, I checked those seeds every day. For so long I didn't see anything. Then something happened. Jeff was hospitalized, and of course I was by his side the whole time. And I forgot all about those seeds. So imagine my complete surprise when after 11 days' absence, we came home to find that one of those seeds had sprouted. And a tiny little barrel cactus bud was pushing up out of the dry soil, resilient and strong. 

Just a little reminder that life still finds a way even through the harshest of conditions.

Here's to 8 years!

Year One

Year Eight

A Caregiver's Struggle

 This picture was taken earlier this week when I took our daughter to an outdoor mall for her birthday. She was beaming - so excited to be spending time outside the house with mom who was poised and ready to spoil her for her 12th birthday.

And while my smile is genuine, there's a lot hiding behind it.

Earlier that morning, my husband woke up in extreme pain from a stomach issue that has recurringly plagued him for the last several years.

An hour before Evie and I left for our outing, Jeff looked at me and said, "We're probably going to have to go to the hospital this evening." I nodded silently, closed my eyes, and walked out of the room.

This is going to sound horrible, but I was pissed. Every other year since 2017, Jeff has been in the hospital on our daughter's birthday. And it looked like the cycle was going to continue.

I mentally began to prepare myself for the hours ahead: spend time at the mall with Evie, come home, immediately pack for the hospital (there's A LOT to pack for a ventilator dependent quadriplegic), maybe shower if there's time, wonder if the hospital is even going to let me in, should I call an ambulance or try to get Jeff into his chair and drive him there myself? Once they realize he can't pay, they'll have to let me in, right?

With all these questions swirling around inside my head, I set off for the mall with Evie while Jeff's parents stayed with him.

I snapped the picture above right when we got to the mall. We were walking in and were both so excited to spend time together shopping (even though I loathe extended amounts of shopping, it was worth it since I love my daughter). But behind my smile in this picture is all the worry of the morning. All the anticipation of what's to come. All the disappointment that my daughter's birthday might end with mom and dad in the hospital.

I texted Jeff every hour while I was away. At one point I got a text from him asking where some medication was. After sending instructions on where his dad could find it, they still couldn't locate it. So I asked, "Do you need me to come home?" I was met with a "No" answer and that they eventually found the medication. Still, I was rattled. In the middle of Old Navy, trying to find my daughter some new jeans that fit her properly, my worry for my husband was running over.

After several hours out with our daughter, plus a stop at the grocery store to pick up a cake, we made it home where I immediately switched into caregiver mode. Jeff informed me that since he didn't feel worse than earlier that morning, he didn't think we would be heading to the hospital. 

We were both able to breathe a little easier.

The next day he felt better.

The following day he felt worse.

And now it's today. He still feels like crap. And it's Friday, so I have to round out the week with homeschool as well as care for a quadriplegic who's in constant pain.

Evie and I made it till 10am before I had a breakdown. Summer is looming, and Evie's got a major case of senior-itis even though she's only in 6th grade. Combine that with a quad dad whose pain I absolutely cannot fix, and you've got one caregiving mom who blows her top.

Being needed is a wonderful feeling. Being torn between the complex medical needs of a quadriplegic spouse and the educational needs of a reluctant pre-teen daughter is not.

And at 10 am this morning I was SO. FUCKING. OVER. IT.

Maybe it's the time of year - as a first-time homeschooling mom, I've never been so excited for summer. Maybe it's 8 years of caring for my paralyzed husband. Maybe it's the pandemic.

I'm pretty sure it's all of it.

Today was not a good day. I cried off and on, which I rarely do. I teared up while making dinner, which I never do. I've been in a funk all damn day.

Jeff and I are awaiting our second shot of the vaccine, and we've been talking about how excited we are to finally be fully vaccinated. And as pro-vacciners, we are. But sometimes I wonder ... why? It's not like we're going to suddenly start going out once we're vaccinated. My husband hasn't gotten out of bed in a week because of his pain. For every five days of pain he endures, he gets one good day - sometimes only several hours - in return. 

What kind of life is that?

If you are among the people who are counting down the days until your favorite restaurant re-opens so that you can be there when it does, what you should be counting is your lucky stars. That means your normal is about to return.

But when my normal returns, my husband is still going to be paralyzed. And probably still in pain. My daughter is still going to need all the attention of her mom who can't adequately give it to her. And I'm still going to be stuck playing monkey-in-the-middle to both of them while marginally succeeding at maintaining my own sanity.

At this point, I have no desire to go out to a restaurant. I just want to sit out in our backyard and enjoy the evening breeze with both my husband and my daughter. I don't think this is too much to ask. So why is it so hard to achieve?

This blog post isn't happy. It doesn't have the life lesson or the positive wrap up I usually put on it. But it is 100% honest. And sometimes honesty is all I've got. 

I'm not looking for sympathy or encouragement or anything like that. I think I just needed to use my blog space to get some stuff out. To acknowledge a series of bad days. To be real and authentic about what it's like to be a spousal caregiver who is also a mother, a teacher, a problem solver, an individual.

I know things will get better. I'm sure we'll find something to laugh about tomorrow. 

And that will go a long way.

Family Caregivers and the Legal Loophole

In Nevada, it is a felony to practice medicine without a license. It is illegal and punishable by fines and/or imprisonment to perform unlicensed nursing in our state.

And yet, this is what I do every day.

This issue was recently brought to my attention through a Facebook post written by a woman who I don't know personally, but who I respect deeply for her unyielding advocacy for her medically complex daughter. 

Dawn Oates' voice resonates loudly for all families who are forced to provide skilled nursing care for their loved ones, and who do so without pay, without recognition, and to the financial benefit of government programs. Her point in writing her Facebook post (at 1:30am no less - a time acknowledged by many family caregivers to be the only time of day such productivity is available) was to advocate for family caregivers to be included in Phase One for Covid vaccinations. But she also discusses a variety of other issues that directly affect the daily lives of family caregivers and the ones they provide care for.

A huge issue for Dawn's family is an inadequate supply of qualified nurses to provide care for the hours her daughter qualifies for (an issue that existed before Covid, but is now exacerbated by it).

The issue for my family is different, but related.

My husband Jeff is a C4, ventilator-dependent quadriplegic who requires 24/7 care. He can't move his arms. He can't breathe on his own. He needs assistance with every aspect of life. And yet he doesn't qualify for nursing care.

Most people (those who are not family caregivers) are so surprised to learn this. How in the world can someone with such a severe disability not qualify for any nursing care? It's because as an adult, the disability is not the first factor in determining whether someone qualifies for care. It's all about work history. Jeff worked for 20 years before he was injured. And because of that, he qualifies to receive Social Security Disability Insurance benefits. And the monthly amount he receives is just over the threshold for what is allowable by Medicaid, the only government program that provides nursing care. In essence, my husband makes "too much money" to qualify for nursing care - though of course that statement is ridiculous because his income in no where near adequate to survive on AND pay for necessary care, equipment, and supplies required for his medically complex situation.

Enter the family caregiver. 

The unpaid, untrained loved one who is forced to provide essential, highly skilled, life-saving duties. Day in day out, we slip right through a legal loophole and perform care that is otherwise denied to our loved ones. Care we would be imprisoned for is we tried to provide it to anyone else besides our family members.

Yes, my husband does receive some nursing care. He's on a program where a nurse comes out to our home every couple months to check his vitals, refill prescriptions, etc. And he is allotted some hours per year for a nurse to come out and do things like change his catheter.

But here's the catch. If we have a nurse come out to change his catheter and that catheter leaks (which it usually does during a cath change), and urine spills down the front of my husband's pelvic area soaking his skin and sheet and mattress, that same nurse is NOT going to spend the next hour cleaning him up, turning him to one side, ensuring his wound dressing is still intact, cleaning the mattress, changing the sheet, putting his limp body back into a semi-comfortable position, propping up his arms with pillows, and putting his soft boots on to prevent sores on his heels.

She's just not.

Whenever we have nurses visit, especially if it's a new nurse, they always ask the same questions: Who changes his catheter? Who changes his trach? Who manages his colostomy? Who does his wound care?

The answer is always the same: Me.

Because who the hell else is going to do it?

Of course I'm not actually a felon. I'm not posing as a healthcare professional nor am I attempting to pull the wool over anyone's eyes. Rather, I'm trying to enlighten. The issues family caregivers and their loved ones face are deep and vast. I think people on the outside see our family and think what a bummer it must be for my husband to need someone to help him do everything, and what a burden it must be for me to have to feed and dress him.

The real issues we face are so, so much more complex than that.

I could write forever on this subject, but the truth is, I have to go do my husband's wound care right now. Yes, we have a nurse that's coming out twice a week to check and dress the wound, but the the other five days it's my responsibility. So in about 30 minutes, I'll be looking into a tunneling wound, cleaning it, packing it, dressing it. Hoping it doesn't get infected. Hoping it's smaller the next time I check it because if it isn't, I won't know what to do. Because my training consisted of watching a nurse do this. One time. Then it was my turn.

But no matter how scary it is, how uncertain or hesitant I am, how inadequate I feel in providing these highly skilled, life-saving measures for my husband, I will always dive right in and do them. I will never not do them.

Because if I don't, who will?

****

Please check out and share Dawn Oates' Facebook post where she advocates passionately and articulately for family caregivers. 

https://www.facebook.com/dawnoates/posts/10221797360656560

Seven Years: Perspective Through Pandemic

July 27, 2020 marks seven years since Jeff's spinal cord injury.

I don't think I will ever be able to shake that feeling there on the beach, watching my husband be pulled limp and lifeless from the water. The terror of thinking he was dead, the relief when I heard him talking, the confusion as to why he couldn't move, and the heavy realization that I'd just witnessed my husband break his neck are feelings embedded deep within my being. Those feelings resurface now and then, but in truth, we've moved beyond them being a part of our daily life.

As with any life-changing incident, you go through stages as you begin to move forward. It's hard to classify what stage you're in when you're still living it, but I think we've finally moved from "we're still adjusting" to this life to "we've adjusted."

People often ask if this life gets easier as time goes by. I'm not sure if you can define it like that. There's certainly nothing "easy" about living with a spinal cord injury or taking care of someone who has one, especially when the injury is high up in the neck and results in no movement from the shoulders down and requires a ventilator for breathing. I think as time goes on, you definitely get more used to this life, and you get better at dealing with the demands and handling the urgent situations that crop up. But I don't think it ever gets easier.

When your life is changed by something like a spinal cord injury, it's almost like living in a parallel universe. Like living on one side of the glass where everything is different, everything is strange, everything is so confusing. And you're using every ounce of energy you have just to stay afloat. But on the other side of the glass, life continues as normal. You watch as your family and friends shed the shock of your injury and resume their regular lives. You see them celebrate milestones. You see pictures of them on vacation, and watch their kids grow. It's like watching what your life could have been like - should have been like - if this horrible thing hadn't happened. 

You adjust, like we have, and you move forward, but in a very different way from everyone else around you.

And that never really changes much year to year. 

But this year, something did change. Something happened that no one saw coming. Something that affected everyone.

I am, of course, referring to the COVID-19 pandemic. I feel like it came in slowly - we heard about this illness and watched as more and more people started getting sick. Then it hit with force and life on a global scale was turned upside down. 

And for the first time in seven years, I felt like that glass between our world and the one outside started to dissolve.

When the quarantine orders were given and lockdown began, I started to notice a shift. People were no longer able to do what they had been doing all along, and I was intrigued by the way they reacted to this. Some rolled with the punches, some dug in their heels stubbornly, others completely lost their minds.

I watched as people traded new routines for old ones, shifted to staying inside instead of going out. They had to ration essentials and plan ahead to when they would go shopping for more instead of going on a whim. The had to turn everything inward and learn how to make it through isolation. Many worked harder than ever, putting the needs of others before their own. Many lost their jobs and scrambled to make sense of their new realities.

For the first time, I watched as the collective public struggled with adversities similar to what Jeff, Evie, and I have experienced for the past seven years.

And I'm going to be very honest here, observing how some people have reacted to change has been really difficult for me to witness. 

I've watched videos of people fighting one another over a carton of toilet paper on the same day I've been told by the vendor who supplies Jeff's ventilator equipment that the tubing he uses to breathe is on backorder due to increased demand for people in hospitals infected with COVID-19.

I've seen people lamenting about how they can't breathe when they wear a mask while I remember back to when Jeff was newly injured and a nurse was cleaning his inner cannula. She removed the air, and I told her he couldn't breathe for more than a few seconds. She wasn't fast enough, and I watched as he gasped for air, his eyes rolled back into this head, and he passed out from not actually being able to pull air into his lungs. He woke up a few seconds later, crying, telling me he thought he had died.

I've watched people complain about being bored. About how they are at their wits end with spending so much goddam time with their family - the people they have CHOSEN to go through life with. About not being able to do what they want when they want. And all I can think is, "My god, these people wouldn't last a day in our life."

But for every person who has temper-tantrumed their way through this pandemic, there are others who have forged ahead and redefined what everyday life means. They've gained new skills. They've picked up old hobbies and found new ones. They've done something in their own life that has changed the lives of others. Even through adversity, they've continued moving forward. 

I want to note here that there is no right or wrong way to react to a pandemic or to a life-changing event for that matter. But I do believe some reactions keep you stuck where you are, and others propel you forward. Believe me, Jeff and I have experienced the entire range of reactions during our seven years of living with his paralysis. There are days where all we want to do is complain and cry and scream at how unfair life has turned out for us. Then there are other days where we absolutely dominate this life with a confidence that only exists because we've triumphed through adversity.

We're still in this midst of this pandemic, and I don't know how any of this will turn out. My heart aches for the people who have become ill and for those who have lost loved ones. I don't believe that everything happens for a reason. But I do believe that good things can still be possible even when bad things seem to have taken over. 

I think what it boils down to is attitude.

And that's what Jeff and I have tried to focus on the last seven years. Moving forward with a positive attitude. Sometimes that doesn't happen. But most of the time it does. And I think that's a big factor in how far we have come as individuals, as a couple, and as a family since his injury.

My hope is that going through something as challenging and life-changing as a pandemic will help make us - the collective us - more empathetic, less selfish, and more willing to face change with a positive mindset. Not everyone will be able to do that. (I am a firm believer that you can determine a lot about people by the way they handle change.) But if most of us can, then maybe we can be the wave that carries all of us forward.

Cheers to my husband for enduring the unimaginable for the last seven years. 

Cheers to our daughter for handling more through your growing years than you know. 

Cheers to me for keeping it all on track.

Let's keep moving forward. 

More Than a Papa

It's Father's Day here tomorrow, and I want to dedicate this post to the first man I ever loved: my Dad.

* * * * *

Neither Jeff nor I grew up with grandfathers in our lives. Jeff never knew his, and by the time I was five years old, both of mine were gone.

Evie is lucky to have four grandparents who love her - and she loves - very much. 

But there's one who holds a very special place in her heart and in our life.

When he pulls into the garage and opens the door to come into the house, he is met with a greeting from Evie that no one else receives. No matter where she is in the house, or what she's doing, she ceases all goings on, and screams, "PAPAAAAA!"

She knows that when Papa arrives, she's going to get some very special one-on-one time with him.

I happen to know all about this special one-on-one time. Because when I was Evie's age, I got that same special treatment. But back then he wasn't known as Papa. I simply called him Dad.

My dad has been there for us from day one of Jeff's injury. He was the first person I called after Jeff had been loaded into the ambulance. He met us at the hospital, and he drove Evie back to our house that night while I dealt with the shock and confusion following Jeff's accident.

A couple years later, when my family moved to Las Vegas to be closer to Jeff's parents, my dad followed suit. And over the last few years, I've not only grown closer to my father, I've also watched him develop special relationships with both Jeff and Evie.

He's not just a father-in-law to Jeff, he's also a great friend. And that means so much more than I can express - to both me and to Jeff. While Jeff still has his buddies in his life, he mainly interacts with them online. So face-to-face interaction is rare. That's where my Dad comes in. They watch sports together, and love talking about football, basketball, and golf. If there's days where Jeff can't get out of bed, my Dad pulls a chair into the bedroom so they can watch TV together. A couple years ago, Jeff got my dad hooked on Game of Thrones, and while Evie was at school, and I was busy doing work around the house, they binge watched the entire series! They talk about everything, even things you aren't supposed to talk about like politics and religion. Their views might not align exactly, but they respect one another and can have a level-headed discussion. My Dad's ability to intelligently engage with Jeff on a variety of topics is invaluable. And it's something Jeff needs. It's the type of interaction that fills Jeff's tank and keeps him looking forward to another day. 

And then there's his relationship with Evie. They are two peas in a pod, and have made some lasting memories together over the past few years. On the issue of full transparency, Evie bosses him around something fierce. But that's what I love about my Dad. He lets Evie decide what they do. He lets her call the shots for once. He does things with HER in mind. Some days they swim. Some days they bike ride. Some days they paint. Some days they do all of these, and more! And on those days, my poor Dad is worn out by the end of the day. And so is Evie. But on those days my and Jeff's hearts are so full.

Because on days where my Dad spends a lot of time with Evie, those are the days Jeff and I can't spend time with her. Those are the days when Jeff needs me by his side - either because I have a lot of maintenance work to do on him, or because he needs extra care, like this wound that has been pestering us of late. There is nothing - and I mean nothing better - than when Jeff and I are stuck inside, forced by necessity to put his SCI first, and we can hear Papa and Evie laughing in the backyard together. There's no better feeling knowing that your child is happy. And on the hard days, Papa makes that possible for us.

About a week ago, I was putting Jeff back to bed. We'd had a great evening with my Dad. He'd played with Evie earlier in the day, then we had dinner together, and watched a movie as a family. And as I was putting the sling around Jeff to transfer him into bed, I noticed tears welling up in his eyes. I grabbed the tissue and wiped. He looked up at me with so much emotion on his face and in his voice. "I'm so thankful for your Dad," he told me quietly. "I mean, you're my hands and feet in a way that you keep me alive every day. But he's my hands and feet in a different way. He plays with Evie in ways I can't anymore. And I'm so grateful for that."

My Dad has often told me that being my father is one of his life's greatest accomplishments. Learning from him and applying characteristics he instilled in me like responsibility, independence, and compassion are among mine, especially in recent years. We always try to tell my Dad how much we love him and how much we appreciate his company and his help. But I don't know if he realizes he's so much more than that. 

More than a Dad.

More than a Father-in-Law.

More than a Papa.

We love you so much, Dad.

xoxo

I'm a Caregiver and a Wife and a Mother - Here's What I Want

I wish I could say that the new year has started off with a bang - that we're all feeling good and heading into this new decade with smiles on our faces.

But writing that would be a lie.

This month has been hard. This last week has been incredibly trying. Maybe it has something to do with the heaviness felt, especially here in the US, since the tragic helicopter crash. When things like that happen, life for everyone else is supposed to take on a new perspective. Make us feel grateful for the things we have.

And I am. My god, I am truly and deeply grateful for my husband and my daughter.

But even with tragedy looming large, that doesn't mean my family's difficulties are any less. I wish I could sweep our stresses under the rug. I wish I could take off my husband's spinal cord injury like an old worn out suit, put it in the trash, and watch it be whisked away every Monday morning.

But stresses like that, caregiver stresses in particular for me - cannot be discarded so easily.

I've been so angry lately - my emotions so close to the surface. Quick to cry, quick to let out a defeated sigh - with even the smallest provocation.

Jeff spent a week in the hospital in mid-January, and even though he's home now, he still isn't feeling great. He came home with a wound on his rear end from his hospital stay, and it took us the last two weeks to get it to the point where it's almost healed. That's a lot of extra patience for him (he's only got out of bed twice in the last fourteen days) and a lot of extra diligence for me (daily wound care, propping of legs, checking for pressure relief, etc.).

In addition, I've finally admitted that I'm drowning in the administrative side of Jeff's care. And things like self-care, quality time with our daughter, and sleep have all gotten lost in the goulash of life.

Last night I had a breakdown. As a caregiver, as a wife, as a mother. I cried in front of Jeff and Evie. I told them bluntly that I need more from them.

I absolutely hate turning the spotlight on myself. I am acutely aware that I am not the only person in this family suffering. We are all trudging down our life's path, each saddled with more than we can handle.

But one of my jobs is to keep us all on track. And one of the ways I do that is by asking my husband and my daughter every single day, multiple times a day, "What do you need?"

Last night I stood in front of the two people I love the most and told them I feel like a broken record. I am constantly asking them "What do you want? What do you need?" And If I'm not actively asking the question, I'm anticipating what their answers might be, and I'm acting on it.

Then I told them something else. My voice was shaking and my tears were held back only because I was angry too: "No one ever asks me that question."

I sat there in silence for a moment, then said out loud, but really more to myself, "Honestly, I don't even know how I would answer it."

An hour later we all went to bed. But I spent several hours that night thinking about what my answer to that question might be. What do I need?

I immediately thought of the essay "I Want a Wife" by Judy Brady. I first read this essay in college. And my 19-year-old self naively thought upon reading the title that the author was making a statement about her sexual preference. She wasn't. She was making a statement about feminism, particularly listing all of the things a traditional housewife does to keep things running smoothly. The message goes much deeper, but this isn't the post to expand on that. The reason I thought of the essay is that the thing this woman wants isn't too far off from the things that I want.

So as a caregiver, who also happens to be a spouse and a parent, here are the top five things I want:

- I want to stop time so I can catch up on everything that is half done, that's come undone, that hasn't even been started yet. Time is the nemesis of a caregiver, the one who has to be the arms and legs of not only herself, but of another person as well, so being able to manipulate time would be at the top of my list.

- I want five hours of uninterrupted sleep. Just five. I don't want to be greedy and ask for eight. That would probably be too much anyway. I can't imagine what five straight hours of sleep would do for my physical and mental well being.

- I want a clone - an actual physical copy of myself that could do the things I don't have time for. She could schedule and attend my overdue mammogram appointment. Or earlier this month when I was in the hospital with Jeff, she could have kept the follow-up appointment I had to cancel with a cardiologist to check on the status of the fluid around my heart that was discovered on an ultrasound a few months back. She could deal with the stress of this kind of important self-care appointment, then she could come back home and tell me that everything is okay, all while I spend the afternoon tending to my husband and getting him out of bed.

- I want someone to keep me on track. Someone who knows every medication I take, when I take it, and who gives it to me at the right time. I want someone who asks me if my phone is charged before I leave the house. I want someone to remind me to wash my hair. I want someone to tell me when the toilet is going to break and when I'm going to need to schedule in extra time to fix it. I want someone to tell me I need a nap because I've been extra grumpy and could use a little lie down.

- I want someone who worries about me as much as I worry about my husband and my daughter. I want someone who can't sleep at night because they're not sure they're doing everything they can to make sure I am happy and safe. I want someone who puts me first and themselves last because they know they are strong enough to be the engine that pushes me forward.

As you can see, my list is rather preposterous because none of these things exist in my current life. It might be outlandish, but it's true. Because the things caregivers need often aren't tangible. Yes, I can always use help with things around the house, and errands, and dinners, etc. But what I really, truly need is listed in detail above.

Right now though, I would settle for things to go back to the way they used to be. I'm not even talking pre-injury. Jeff and I have fully accepted that his SCI is here to stay. What we'd really like is for things to just get back to him being paralyzed and stable.

This morning as I was getting ready to take Evie to the bus stop, she came up to me and quietly said, "Is there anything you need right now?" I looked into her eyes and smiled. She was listening, and she was trying. I told her, "The only thing I need right now is a hug."

And it helped.

Here's hoping that 2020 starts looking up.

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.