Thursday, January 10, 2019

The Caregiver's Education

Before my husband's spinal cord injury, I was - what you might call - book smart. It's a self-imposed label I apply to the years in my life that led up to July 27, 2013 - the day my husband became a quadriplegic. The day that one period of my life ended, and a new one began.

When I first met Jeff in 2001, I had just completed a master's degree and was teaching English at a community college. My degrees combined with my experience in working with words landed me a job at a legal publisher where I worked for the next decade. That experience of creating documentation led to my next career as a technical writer. All in all I was happy with how my job experience had progressed. My resume flowed logically from one position to the next. I could say with confidence that as a teacher, an editor, and a writer, I was using my education and building a solid foundation of employment history.

On July 26, 2013 I had a good job. I was making good money. I was contributing significantly to my family's security, and I was stashing away funds for retirement.

On July 27, 2013 I was standing at the foot of an ICU bed watching doctors and nurses intubate my paralyzed husband. And in that moment, none of the education, none of the work experience I'd built up over the prior 15 years ... none of it mattered.

It was as if Jeff's spinal cord injury had just deleted all of the carefully worded bullet points on my resume.


It was time for a new education.

But this learning experience wasn't in a classroom. And it wasn't about hypothetical situations I might encounter in the future.

It was hands on, and it was happening right now.

Because family caregivers like me don't take semester-long courses on how to become a caregiver. We become caregivers the moment our loved ones are injured. Sometimes we don't even realize at first that we've stepped into this role. Most of the time we don't even have a choice.

I can remember a physical therapist showing me how to stretch Jeff's legs just a few days after his injury. I can also remember wondering why she was teaching me how to do this when it was her job. I didn't realize back then that she was training me to keep my husband's legs limber because in the long haul, this would in fact become my responsibility.

A few months later, my formal training would begin while Jeff was in rehab. I was taught how to clean and change my husband's trach. I was taught how to flush his catheter. I was taught how to transfer him from a bed to a wheelchair and back again. Doctors, nurses, and therapists were my professors, and they all gave me passing grades so I could graduate.

My first true caregiving job started in mid February, 2014 when Jeff came home from rehab. The EMTs wheeled him out of the ambulance and transferred him into his bed. The respiratory therapist made sure the ventilator was working properly.

Then everybody left.

It was like bringing home a newborn and suddenly realizing that YOU are in charge, but you're not entirely sure you know what you're doing.

And while that may have been the day my new role as a caregiver formally began, my education was really just starting to ramp up.

I learned that caregiving isn't just hands on. It's also about advocating for your loved one to get the medical care he needs. It's learning how to communicate with medical supply vendors and insurance companies. It's understanding there's a major difference between Medicare and Medicaid and which one - maybe both - your loved one qualifies for and how that will impact your life.

And the troubleshooting - oh the troubleshooting. It ranges from deciding how to fabricate a stylus holder out of medical tubing, zip ties, and adhesive velcro to figuring out, in a panic, the most efficient way to get urine out of my husband's bladder during a life threatening episode of autonomic dysreflexia. Truly, sometimes I feel like my life has become a combination of Mythbusters and Untold Stories of the ER.

But thus is the life of a caregiver.

When I was in college mapping out the different ways my life and jobs might go, this caregiver gig wasn't even on my radar. And now that I'm five years into this new life, I admit that it's hard to look back at my old life at the years I spent learning, preparing, and working just to be forced to drop it all and start over.

But the last five years have more than rounded out my book smart years. I've discovered that education doesn't just come in the form of letters after your name. That real life experience - I'm talking the stuff that fractures you and drags your broken self down the path of life - is one hell of a teacher. And that like in my old life, I am still continually learning.

So while the skills I've acquired in my new role as a caregiver - like efficiently changing bed sheets with someone IN the bed, expertly dealing with all matter of bodily fluids, and gently wiping away tears on days that are just too much - might not be impressive to a traditional employer, I happen to know a guy named Jeff who is very much in need of someone with these skills.

And he'd hire me any day.

The early caregiving days. I was smiling, but I was scared to death.

A confident and experienced caregiver. I'm lucky to be able to take care of this guy.

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.