Diabetes Essays

The Weight: Caregiver Fatigue And Diabetes

When your kid's life is on the line, caregiving is a 24 hour job. What do you do when that job wears you down?

Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on November 16, it is one of our favorite pieces from 2017.

It’s 2:14 in the morning and a high-pitched beeping is coming out of an iPhone next to my bed. I groggily stand up, trudge upstairs, and save my son’s life again.

My son Henry has type 1 diabetes. It’s an incurable autoimmune condition that, if managed well, won’t have a significant impact on his quality of life. But managing it well presents its own challenges for my wife and I.

Henry Jensen.

The thing with diabetes is that there are two dangers. If his blood sugar goes high, it’s not an immediate threat. Too much of that will cause his eyes to fail and his organs to shut down, but we catch that kind of thing pretty quickly and he’s very responsive to insulin. But if it goes low– and keeps falling–it can result in him falling into a coma and dying. When he goes low, he typically loses 50% of his brain functionality, meaning that he’s not always capable of treating it himself.

It happens all the time. And his sugar can drop really fast. We’ve been out swimming or hiking and he’s plummeted from the mid-80s to the mid-40s in ten minutes. Once he was at school and he dropped so precipitously that he wasn’t coherent enough to take sugar by mouth. The staff had to give him the Glucagon, an injection of sugar that will rapidly spike his blood glucose back up to safe levels. That’s a big needle, a scary needle, and it goes right into the muscle.

So we have a device called a continuous glucose monitor, a little needle implanted in his arm, attached to a Bluetooth transmitter that broadcasts his blood sugar level to his iPhone, and then into the cloud to our iPhones. It’s a wonder of technology, something that would have been unthinkable a generation ago.

Instead of having to take a needle, prick his finger, and siphon blood into a glucose meter every time we need to look inside his body and find out his sugar, we can now see it whenever we want. He’s also wired up with an insulin pump, a small device in his stomach or back that we replace and move every three days, so when we need to bring his sugar down it’s simply a matter of conveniently pressing a few buttons as opposed to prepping a syringe, measuring a pull of insulin, finding a site and giving him an injection.

Things are tremendously better for him than they were for diabetics 20 years ago. But that doesn’t make them necessarily better for me. The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

The downside of having all this information at my fingertips is that I’m constantly on edge, an information junkie for my son’s survival.

Some nights his alarm goes off every two hours, each time asking for more insulin or more glucose to stabilize his sugar one way or another. Some nights his alarm never goes off at all. Even then, I find myself waking up anyways, usually at 2:30 in the morning, and reaching over for his phone in a panic. Did the battery die? Is he OK? He is. He always is. But I still check.

And then there are the nights his alarm goes off, and goes off again, and again, and again. On a particularly bad night I can be up every hour or two to give him a sip from a juice box to raise his sugar, or a unit of insulin to bring it back down. And then I have to get back in bed and try to get back to sleep with the lingering adrenaline from being woken by the alarm still coursing through my system.

It’s exhausting to have Type 1 Diabetes, but it can sometimes be even worse for the parents.

Let’s be clear: it’s not just me doing this. My wife handles an equal share of the responsibilities for his care. Even with two of us, though, it’s a lot. And it’s wearing us down.

Doctors call it “caregiver fatigue.” It’s when you push yourself to the limit every day contending with the needs of your loved one with an illness and it results in problems for your own health.

Common symptoms of caregiver fatigue include irritability, inability to concentrate, appetite issues and vulnerability to sickness. I can only speak for myself, but after a string of rough diabetes days, I can be a miserable person to be around.

After a string of rough diabetes days, I can be a miserable person to be around.

For me, the biggest issue is sleep. There’s plenty of science that shows that cognitive abilities start to decline when you get less than 7 hours of uninterrupted sleep a night. I can only think of a handful of nights I’ve done that in the last four years. I am fully aware that I’m not operating at 100% capacity, and it affects every other part of my life, from my relationship with my wife to my exercise and diet. I don’t have energy to play with my kids, and I start feeling resentful of their very existence. It’s no good for anyone.

Caregiving is a 24 hour job. And I already have a job. You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

It all came to a head earlier this summer, when my wife left for a week on a business trip. Everything fell apart – Henry got hand foot & mouth disease at a party (please don’t bring your kids to parties when they’re sick) and it made his blood sugar extra volatile as it covered his extremities with blisters. I should have dropped his carb intake, but I didn’t have the time or energy to cook so we did one pizza night too many. Every night was awful, and every day was full of too many things to do. I took great care of my kids, but at the same time I was stretched to my limit. And then I broke.

I wound up spending a week in a mental hospital, dealing with issues that went beyond caregiver fatigue but my exhaustion definitely exacerbated. I was put on an antidepressant and met with some doctors to learn new coping mechanisms. And most importantly, I was forced to admit that I can’t keep doing this without help.

And then I came back to my family.

You can’t take a smoke break or slack off at your desk playing Minesweeper when your kid’s life is on the line.

The biggest issue with type 1 diabetes – and really most chronic illnesses – is that you can’t control them. You can only manage them, and that takes constant effort. And my only real job on this planet is making sure that my children grow up as happy and healthy as humanly possible.

The Jensen family.

Every day is a new challenge to navigate, to learn how to take care of myself as well as I take care of my children. But it’s the same challenge that every parent out there is dealing with. I just have a few additional layers of stress on top of it.

There’s no magic bullet for caregiver fatigue, no medication that will make you care just enough and no more. Just like my son has to learn to listen to his blood sugar and feel if he’s low or high, I need to listen to my joints ache and my head buzz and know that I need to rest. And just like I help my son, my family can help me. One of the best ways for me to manage that stress is to put my work down and sit and play LEGOs with him, or read comics. To let myself experience his childhood unencumbered with him.

I’m going to be caring for Henry until he’s 18, and probably longer. What makes it worth it is knowing that he’s also caring for me. Thinking of him, and my wife, and my daughter while I was in the hospital made me realize that I need their strength as much as they need mine, and together we can do things for each other – and the world – that we could never do alone.

Disability Essays

My Brother’s Keeper

The hardest thing about marrying off my brother was trusting his new wife could care for his multiple sclerosis.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.

When I remember it, the sound my brother’s head made as it struck the foyer wall still makes me cringe.

This, the same cowlicked head I nuzzled up against as a child. This, the same head I consoled, close to my chest, after formative teenage breakups. This head, which bobbed gently in time with mine on summer nights, as me and Matt drove home, singing along to the radio at the top of our lungs.

That sickening thud: How could Matt’s skull make such a sound? And will his new wife–the one who will need to take care of him from now on–know what to do when she hears it?

It was after midnight, a day or two before New Year’s Eve in 2014. Although our social lives were happily intertwined, we’d made different plans that evening. By the time I came home, Matt and my parents were both asleep, so I sat down in the living room to watch TV.

Dan & Matt Hajducky at Jones Family Farms in Shelton, CT

Out of the darkened hallway he came, his legs wobbling beneath him. There was untold helplessness in his ashen eyelids and pallid cheeks.

Matt was 23 at the time, a former high school linebacker who had gone on to play Division III football at Springfield College. He was the type of player that anchored a defense, a team leader who caked his cheeks in eye black before the game, who threw down heavy weights with cacophonous aplomb. He seemed to dream about Friday night lights all week long. Weakness, mental or physical, was simply not in his DNA.

So I assumed he was drunk. But I should’ve sensed something else was wrong.

“Been there, buddy!” I said, prepared to tuck him into bed with a bottle of Advil in the nightstand.

Sweat glistened on his forehead, his body hot to the touch.

“No, no. I didn’t have…anything…to drink,” Matt whispered through shallow breaths. 

Hunched over the sectional, cushions clenched tight in each fist, he glanced around the living room. “I don’t feel…so good, Dan,” he gurgled, a far-off look in his eyes. 

Then he released the couch cushions, stood upright, and lost consciousness. I caught him.

There’s a terrifying heaviness to caressing the forehead of an unresponsive family member. I put a pillow beneath Matt’s head. He was disoriented; his eyes were fluttering. He wasn’t speaking. I screamed for my parents, then called 9-1-1.  

There’s a terrifying heaviness to caressing the forehead of an unresponsive family member.

At the hospital, Matt had a CAT scan for a possible concussion and was treated with fluids for a bacterial infection. While the IVs dripped, we passed the time watching Nickelodeon until morning, talking about anything but what had happened. 

The doctors told us there was no concussion, but there was an awful lot of smoke for there to be no fire. Matt wanted to get an MRI. But it took months to get any answers.

In May, I was five months into a new job when Mom asked if I could leave work early. There was finally news with Matt, and it was better discussed in person. Sitting on the same living room sectional Matt had fainted in front of that night—the “bad news sectional” where, in previous years, I had learned of Mom’s breast cancer and Nana’s Alzheimer’s—Mom and Dad said that doctors had found lesions on Matt’s brain. The tingling fingers he’d complained about off-and-on, which we had all long assumed were pinched nerves coming from football, were actually the warning sign we’d all been missing.

Matt had multiple sclerosis, or M.S.

Matt Hajducky, seemingly the picture of good health.

My father is a stoic man, not one for tears; to see him sobbing rattled me. But my mom, a cancer survivor who comforted her mother through dementia, was more optimistic. 

I digested and asked the necessary questions:

“Did they catch it early enough?” (“Yes. He’s young. Usually M.S. isn’t caught until later on, which is when things get complicated.”)

“Will he have to get treatments?” (“Once-a-month injections for now. Later, depending on progress—his and modern medicine’s—hopefully just a pill.”)

“How’s he doing?” (“Really, really well. Although his doctor says he shouldn’t have gluten anymore—so your homemade pizza nights might be tough.”)

With that, I nodded, hugged my parents, and went out to water my garden. I pulled weeds and plucked cucumbers and tomatoes from their vines. I stockpiled basil for pesto I would make later. In some strange way, I thought that if I could tend to fruits and vegetables, maybe I could tend to what was wrong with Matt,.

 Matt came home from work a few hours later with the same all-encompassing, room-illuminating smile as always, as if nothing had happened. He took his diagnosis in stride, adapted to his circumstances. Must be in the genes.

From then on, our entire family came together to take care of Matt. We did our best to make dinners sans gluten. (Admittedly, gluten-free pizza dough was a trial-and-error process.) Matt started running 5Ks and dove into his—admittedly new—workout regimen: less weightlifting, more cardio. One weekend in April of 2016, we gathered a crew and went to a walk for M.S. in Baltimore. Hundreds of people, all affected by the same unpredictable illness, smiling and laughing while brandishing t-shirts that read: “Together, we will end MS forever.”

In its own way, MS had drawn our family closer around Matt, while simultaneously bringing us into a larger family in the multiple sclerosis community.

In its own way, MS had drawn our family closer around Matt, while simultaneously bringing us into a larger family in the multiple sclerosis community. Yet when it was time for me to welcome another person into our family, and turn over caregiver duties to someone else, I paused.

Matt and his new wife, Courtney.

In October, Matt got married to his long-distance girlfriend of more than half a decade, Courtney. I like Courtney; I know they’ll be happy together. But even as I gave my best man speech, the emotions I felt were bittersweet. I’ve always been my brother’s keeper, but now, our life together was seemingly ending. Yet could Courtney really take my place, especially with Matt’s M.S. as a factor? Will she know what to do if Matt loses consciousness? On the bad days, when he feels everything and nothing, will she be able to make him laugh? When he feels disillusioned with the hand he was dealt, can she bring him back down to earth?

Time will tell. These aren’t questions to be answered in haste. But Matt still makes it to movie and board game nights, he’s still a regular at trivia, and pumpkin picking has never been so competitive. Only now, my sister with the Southern drawl comes and I’ve never seen my brother happier. For the first time in more than six years, the woman he loves lives a fingertip away. The other night, we gathered for dinner and the Patriots-Falcons game at Mom and Dad’s house. Around the beginning of the second quarter, Courtney started to nuzzle into Matt’s shoulder and fall asleep. But Matt kept on talking football with me, laughing his full-bellied chuckle, discussing Halloween costumes and making plans to see Justice League.

It was then that I realized how wrong I’d been. A new chapter didn’t mean ours was over. A chapter is, by nature, forever entwined with the ones that come before and after. We might be older, one of us married, but we’re still the same boys who played Whiffle Ball at Nana and Papa’s, basking in the sun’s glow after sliding into home. We’ve just got some tread on our tires now.