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.