Tuesday, September 26, 2017

The Toll of Constant Caregiving: Sleep Deprivation

Today I'm writing about something that's hard for me to admit.

I'm overwhelmed.


I am the glue that holds my family together. I provide all the care for my paralyzed husband. I engage in all of the hands-on, physical aspects of parenting our daughter. I work part time. I maintain our home. I manage our finances and all of the administrative aspects of my husband's disability. And now and then I work in some time for myself so I don't lose myself in the acts of providing for everyone else.

And most of the time I do everything without batting an eye.

Most days I am a machine.

But lately my machine hasn't been performing optimally.

For the last 7 months, Jeff and I have not been sleeping through the night. Not one night in more than half a year have we gone to bed without waking up at least once to address his needs. Most of the time we're up two to three times. Sometimes it's just for 5 or 10 minutes. Other times it's for an hour or more.

And while I don't know precisely how much lost sleep time we've accumulated in the last 7 months, it's safe to say we aren't sleeping enough.

Getting adequate sleep is important for both of us. But Jeff and I agree that it's essential for me since I need both the physical and mental stamina to get us through each day.

Lately I've felt like I did way back when our daughter was born. I think any new parent will agree that the first couple months of parenting are utterly exhausting. And much of that deflated feeling is due to lack of adequate sleep. According to a study titled "Interrupted Sleep Can Be As Harmful As No Sleep," researchers found that interrupted sleep is the equivalent of no more than four consecutive hours of sleep. And that a lack of adequate sleep can result in, among other things, "compromised cognitive abilities."

And when your cognitive ability is compromised, mistakes can be made.


A few weeks ago, I almost made a serious mistake in Jeff's medication. And the only reason I avoided the mistake is because I got lucky.

Since we'd been waking up so often in the middle of the night, I decided to try to make our morning routine go a little quicker by pre-loading his morning medication in a small cup I kept on the bathroom counter. While I already have his daily medication sorted into a pill organizer, I always keep his pain medication separate. But I had been adding in the pain medication to the pre-loaded cup so I could dump everything in his mouth all at once.

Only I wasn't being consistent with adding the pain medication. Sometimes he'd need a pain pill in the middle of the night, which meant he wouldn't need it with his morning meds. So my system of adding the pain pill to the daily meds wasn't set in stone.

One morning, after a long sleepless night, I was on autopilot. I grabbed his pre-loaded cup of meds, added in a pain pill, and put them all in his mouth.

As soon as he swallowed them, my eyes flew open. I immediately felt sick, and I started trembling.

"Oh my god." My voice was raspy and shaking. "I might have just given you two pain pills at once."

I put my hands over my mouth and started crying. My head was spinning, trying desperately to recall if there was already a pain pill mixed in with his pre-loaded meds.

The pain medication Jeff takes is strong and potent. He typically takes two each day, about 8 hours apart.

And I may have just given him a double dose.

The next four hours of our life were filled with an incredible amount of anxiety. We researched information on overdoses. We thought about calling 911. I rocked back and forth on a stool next to Jeff's bed - the guilt eating away at me.

Finally after four hours passed, we determined that I hadn't in fact given him a double dose. He didn't feel any different than he did with just one pill.

Still, I know that we are extremely lucky this scenario ended the way it did. It so easily could have ended differently.

And if all this wasn't bad enough, a few days ago we had to cancel a morning appointment with a specialist that we'd been trying to secure for the last month for Jeff's stomach pain, because I once again hadn't gotten enough rest. And this time I had an anxiety attack on top of it, knowing that there was no way I could muster up the physical, mental, and emotional strength to get myself ready, our daughter off to school, and Jeff dressed, fed, transferred, in the van, and to the doctor all by 9 am.

It was all too much.

I had been continuing with the constant, demanding pace of this life, but I had been running on the fumes of my reserve tank.

Caregivers can't provide proper care on an empty tank.


So what do we do? Jeff and I have been talking about ways to get more sleep. For starters, we're getting to bed earlier. That means pushing pretty much everything we do after dinner up a half hour. But if that's what it takes, that's what we'll do.

And a dear friend of mine, who also happens to be my boss, recommended a few minutes of mindful meditation and reflection each day to help calm the constant buzz of my brain.

I've been overwhelmed before. And I always find a way to rebalance. But I've never had such a close call with a serious error, nor been the reason we couldn't make a medical appointment.

So I'm working on making changes.

I'm taking cues from recent events, and I'm in the midst of redistributing the weights right now.

2 comments:

  1. Great piece. I was particularly struck by your experience with the potential double dose of pain meds: I make micro-mistakes like these throughout my day (like accidentally leaving something on the stove too long. I honestly can't imagine what would happen to my anxiety levels if suddenly any one of my daily micro-mistakes could lead to a medical emergency for someone else. And I ESPECIALLY can't imagine making the right calls on

    Makes me wonder the same thing I do when I hear about medical staff members who are in the midst of 28-hour shifts.

    Are people like you, who survive and deliver under pressure, exceptional? Or do exceptional circumstances make you into someone who is exceptional?

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  2. With me, and most others, after just one sleepless night we feel like zombies the next day. So I have no idea how you keep going after so many disturbed nights.

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