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.

Sunday, August 20, 2017

Our Anniversary - Reflecting and Rebuilding

Today is our anniversary.

Twelve years ago, Jeff and I got all dressed up, hopped on a yacht in Newport Harbor, and invited some family and friends to celebrate our commitment to one another.

I offer you my solemn vow to be your faithful partner in sickness and in health, in good times, and in bad, in joy as well as in sorrow. ... I promise to cherish you, honor you, and to respect you for as long as we both shall live.

Eight years after we said these vows, my husband was paralyzed from the neck down while diving into the ocean.

And now four years later, we are still rebuilding our lives.

When I think about the phrase 'faithful partner in sickness and in health,' I think about what that meant to me 12 years ago. I am embarrassed to say that back then, I thought it meant something like nursing my partner through the flu. It definitely didn't mean anything close to what it means to me today.

I am my husband's caregiver. As a high level quadriplegic on a ventilator, he requires 24-hour care and assistance. While technology has been instrumental in allowing him independence in some capacity, the truth is that he still needs help with almost every single task throughout any given day. And it's my job to provide that assistance.

As a spousal caregiver I often come across the question of "How do you separate being a spouse and being a caregiver?" This is a big topic in the spousal support groups I belong to. One thing I've learned in being a part of these groups is that no one's situation is exactly the same. And everyone has to find what works for them and their partner. I learn from and respect each and every approach. Because figuring out what works and implementing a caregiving plan is a difficult and complex task.

But for me, when asked how I separate being a spouse and being a caregiver to my husband, my answer is simple:

I don't.

Because I'm not either a wife or a caregiver.

I am a wife and a caregiver.

I'm not one or the other.

I am both at the same time. Always.

Because when I'm cleaning Jeff's trach, we're talking about our daughter's school. I have my headlamp on and I'm gloved up, and the rolling table set up next to his bed is stacked with gauze, saline, Q tips, and ointment. And my husband and I are talking about setting up a weekly homework schedule for our third grader.

Because when I start his breathing treatments in the morning, we're already talking about what we'll do for dinner that evening.

Because when I'm transferring him from his wheelchair back into bed and trying to get the sling out from under his body, he is being silly and making me laugh so hard that it takes me three tries to successfully get the sling out.

Simply put, me being my husband's caregiver works for us.

"I truly don't think I could get through this with anyone but you." 

My husband recently said these words to me after we'd been through some difficult days together. And it's one of the best compliments I've ever received.

Jeff and I have developed a bond over the last four years that is hard for me to accurately put into words. It is built on deep trust and respect for one another that developed as a direct result of the trauma we went through as a couple when he was injured.

His injury caused a tsunami that forever changed the landscape of our life. And we are fortunate that we've been able to hang on to one another as the waters receded. We've worked together to make sense of the leftover chaos and have begun to build our life on top of the wreckage.

But it hasn't been all fortune and luck that have gotten us to where we are.

It's been a lot of hard work and sleepless nights. And an endless amount of grace. We've had to learn to allow one another space to be angry with the turn our life has taken without taking it personally. We've had to accept that each one of us copes in our own way and we've learned to support one another within those parameters. We've consoled one another, we've delivered more pep talks that I can count, and we've both taken turns being the bad cop when it was time for the pity party to end.

Our life hasn't turned out the way I imagined it would on this day twelve years ago when we said our "I dos." Back then, my idea for our future was so simple and idyllic. It involved working, raising our daughter, retiring, then traveling. Instead, I feel like we boarded a rocket, were launched into space, and crash-landed on a distant planet.

But it turns out this planet is liveable. Yes, there's some harsh terrain and surprises waiting to challenge us, but there's also rich soil where we can plant some new dreams and watch them grow.

I wouldn't want to navigate this new world with anyone but this guy.