Wednesday, November 28, 2018

The Hypervigilant Caregiver

I've been wanting to write on this topic for some time - a topic that has been wreaking a bit of havoc in my caregiver-heavy life.


Vigilance is defined as "the action or state of keeping careful watch for possible danger or difficulties." We all know what it's like to be vigilant. To spend time deeply focused on a task or action with your receptors up, ready to respond in the blink of an eye.

But if you look up hypervigilance in the dictionary, it isn't there. Or rather, it refers you back to the word vigilant. And while it's similar, it's not the same. There's one small yet monumental difference in definition:

The word "constant."

Where vigilance is the temporary state of keeping careful watch, hypervigilance is the constant state.

"Hypervigilance for the caregiver is not just a state of anxiety and alertness, but a constant state of giving over of oneself for the needs of another." -Dina Diana, The High Cost of Hypervigilance

As a solo, full-time caregiver to my ventilator-dependent husband who is a high level quadriplegic, I live with hypervigilance every single moment of my life. And with the onset of my husband's stomach issues that we've dealt with for the last 18 months, my hypervigilance is at an all time ... well, hyper.

This doesn't necessarily mean that I don't get moments to myself. I do. But when my husband needs me, I don't have a choice not to respond. Sometimes it isn't urgent. Things like, "Can you put my glasses on?" can wait for a minute while I finish up what I'm doing. But other things like, "I need suction," just can't. 

At night, I don't sleep for more than an hour or two at a time. If Jeff isn't waking me up for a need, I find that I wake myself up in a state of panic. How long have I slept? Are you okay? What do you need?

Some days I find myself crashing mid-day and Jeff forces me to take a nap. But the same thing happens. 

I just can't seem to ever relax.

According to a Newsweek article, hypervigilance can have a real, negative effect on a caregiver's overall health.

"The hypervigilant caregiver becomes exhausted, but can’t sleep. Chronic stress turns on a steady flow of cortisol. Too much cortisol shuts down the immune-cell response, leaving one less able to ward off infection. Many recent clinical studies show that long-term caregivers are at high risk for sleep deprivation, immune-system deficiency, depression, chronic anxiety, loss of concentration, and premature death."

I already know what people on the outside are thinking ... why doesn't she get some help? And they're right. Because help would indeed alleviate some of the hyperness of this constant state of vigilance.

My god, I wish it was that easy. I wish getting help - getting real, reliable, and readily-available help was as easy as simply asking for it.

The truth is there's two main reasons why we don't reach out for help with Jeff's care.

The first is financial. Anybody we hire to help with caregiving tasks, we are responsible for paying them (or an agency) out of pocket. When Jeff was newly injured, I went back to work full time for a year. During that time, we hired someone from a caregiving agency to stay with Jeff for 8 hours a day while I worked. We paid said agency forty thousand dollars. I don't think I need to explain further why this set up isn't going to work long term. And put very bluntly, no one - with the exception of our parents for an hour or so here and there - is going to come over and be in charge of my husband's life without being paid. Period.

The second is two fold: training and trust. Asking someone to come over and watch my medically complex husband while I take some respite time isn't the same as, say, asking them to come over and water my plants while I'm on vacation. Not only is there an incredible amount of training that has to take place to teach someone how to care for my husband, there's also the trust factor. Jeff and I must both feel comfortable leaving another person in charge of his care. And we also need to know that that person is confident in their ability to handle whatever may surface while I'm gone. I trained for months to learn how to take care of Jeff while he was in rehab, and I was still a jumble of nerves when it came time for me to be in charge. 

This caregiving stuff is complex no matter which way you slice it. Put another way, if caregiving were a medication, hypervigilance would be one of the side effects.

And I'm experiencing that side effect in a major way.

Please know I'm not writing this to gain sympathy. Yes, our life took a major unexpected turn five years ago, and sometimes things really, really suck. And even though we've lost control of the new direction of our life, we still have choices. We've chosen for me to become my husband's full time caregiver, and hypervigilance just happens to come along with that choice.

I'm writing this to hopefully shed some light on this topic. If you've ever been a caregiver in any capacity, I am sure you've experienced hypervigilance. If you're got the double whammy of being a full-time caregiver in a long-term situation like me, I know you have. And if you're not a caregiver, but know someone who is, maybe this will help you empathize when that person seems out of sorts or discombobulated.

Because caregiving is hard.

It's challenged me beyond what I ever thought I would be capable of handling. Sometimes it pushes me right over the edge.

Before my husband's injury, I held a variety of positions. I was a teacher, an editorial manager, and a technical writer. Sometimes when I would bring work home or respond to emails late in the evening, I felt like I was working all the time.

But I was never truly on-call 24/7 back then.

As a caregiver, those are my new hours.

And that demanding schedule is what breeds the ever-present, all-consuming state of hypervigilance.

Monday, September 10, 2018


This year Evie entered the 4th grade. When she and I went to Open House at her school, her teacher talked about how 4th grade is a transition year. It's when students really start to think independently - to use the skills they've learned in previous years to begin expanding their knowledge.

The teacher said something that really stuck with me: "Your children are no longer learning to read. Now they're reading to learn."

We're also experiencing transition on another level.

This is the first year since Jeff's injury that I haven't written to Evie's teacher at the beginning of the year explaining that she is the daughter of a quadriplegic - that five years ago, her dad's injury forced a massive change in our family life, and that Evie has done a great job of handling it all.

This is the first year that it's been entirely up to her to decide if and when she wants to tell her teacher or her class about her dad.

Some days she wants to, and other days she doesn't.

And we've had to learn to be okay with whatever she decides.

* * * * *
Two weekends ago, Jeff had to spend a couple days in the hospital.

The following week, Evie was chosen in her class to talk about something that had happened the previous weekend. So she stood up in front of her class and said, "Last Saturday my dad had to go to the hospital."

She said over half the class raised their hands with questions. She was only allowed to call on two students.

The first asked, "Is your dad paralyzed?" At this point, there are quite a few friends at school who know about this fact.

"Yes," Evie answered.

The next question was, "Why did your dad have to go to the hospital?"

Here's what Evie said: "He was having AD - autonomic dysreflexia - which means his blood pressure was really high. My mom was trying to get it to go back down, but nothing was working. So we had to call 911."

Several students simultaneously mumbled, "What's auto...rama...flexa?" But the bell rang, and that was the end of her time.

I looked at my daughter - who was eating her spaghetti while she was telling me this story - and realized that I was witnessing a transition moment.

"You said all of that to your whole class?" I asked.

"Uh huh," she answered casually.

"Great job," I said. Not so much because she shared the information, but because of what she shared.

I can remember when she first learned to say "autonomic dysreflexia" and how proud she was to correctly pronounce a complex phrase. But now she wasn't just saying it. She was saying what it meant. She was showing that she understands that when it happens, it's a big deal.

Because in truth, Jeff's injury IS a big deal in our life. This isn't necessarily true for every person or every family who lives with a spinal cord injury. But it is for us. It's still new enough and challenging enough to warrant the label of a big f-ing deal.

I think in many ways, we're still transitioning as a family. We've got a solid understanding of the injury itself and all the side effects that come with it, but we're still learning to make room for it. We're still figuring out how to deal with this big, crazy, cumbersome thing that's pushed its way into our life and taken up permanent residence with us.

And each day we learn a little more.