One never knows when they might be called upon to take on the very challenging role of caregiver. Without warning someone you love may suddenly need you to provide the most intimate and relentless form of selfless duty imaginable. Did I mention relentless? It doesn’t really matter if it is a parent, a spouse, a child, or a best friend who needs your love, help, and support. When duty calls we must answer.
Love is, in its very essence, sacrificial. Sure, we all know this if we were paying attention in catechism class learning about how Jesus suffered horrible torture and death out of His love for us. Safely tucked away in our intellect, we grasp the concept and embrace the sheer magnitude of the sacrifice of all sacrifices each year when Passion Week arrives. But, wow, when it comes time for us to live sacrificially out of love for someone who desperately needs us, we might find ourselves woefully ill equipped for the challenge.
I can only speak for myself, of course. Many who read this piece may wonder what my problem is. What’s the big deal about taking on the role as a caregiver? Geez, man up, Eileen, they may quip. I get it. Maybe I am just a bit of a wimp. But who knew how challenging, physically, mentally, and spiritually it would be caregiving for my fiancé through his battle with AML leukemia?
As I stated above, these awful life-changing events can literally come out of nowhere. This beautiful man was fit as a fiddle, strong, active, and very health conscious. One week in 2013 he was participating in a rigorous mountain bike race, and the next week he was in a hospital undergoing tests to identify the mysterious malady that had suddenly leveled him. After 10 days of tests we finally received the devastating diagnosis of leukemia.
When you love someone the way I loved this man there is no hesitation when something like this injects itself rudely into your formerly blissful existence. My engines fired and I took on the role of caregiver without missing a beat. Of course, our goal was to lick this thing, this foe—the leukemia could not be allowed to win. Period.
Little did I know what exactly this new role would entail! The Reader's Digest version would include two road trips to Stanford to get the best shot at quality care, so many hospital admissions it is impossible to count, being trained on how to manage post- stem cell transplant care; months upon months of sitting with this lovely man in the hospital rooms, clad in gown, mask and latex gloves, expending so much energy just to try to look like I wasn’t worried as his weight plummeted by 40 pounds; managing 18 medications, breathing treatments, hooking up TPN to his port every night post-discharge (a daunting task when dealing with someone who has zero immunity that literally caused me to break out in a sweat each evening), a bazillion transfusions, each lasting for hours and hours, and ultimately having to face the sad reality that he was not going to win this battle after all.
During the 14 months of his illness I was amazed at his inner strength and resolve, and appalled of the lack of my own. I found myself in a heap on the floor of the kitchen, sobbing like a baby because of sheer exhaustion—both physical and mental. I whined and complained about the substandard hospice care we received, or became irritated sometimes when he wanted to watch yet another episode of Diners, Drive-ins, and Dives. This beautiful man was dying and I was falling apart.
I remember wondering why there wasn’t some kind of service at the hospital to help the caregivers. Surely I wasn’t the only person to lose it, but there really wasn’t. We caregivers soldier on with little support, other than the kind words and gestures of friends and family. In my case I was fortunate to have his daughter and brother involved with the numerous duties that would swallow one person up whole if caregiving completely alone. Together we made a weekly hospital-visit schedule, each committing to certain days to help each other avoid total burnout.
After his death two years ago I was completely depleted in every way. I had lost the absolute love of my life and to this day I grieve this loss daily. I was a sobbing, haggard wreck, my poor heart ripped to shreds and my body weak and listless.
But that old survivor instinct we all have in us started asserting itself, thank goodness, a few months after he passed away, propelled, I believe, by him prompting me to get some self-care. I listened.
The funny thing is, before I met him (back in 2010), I had never treated myself to a manicure, a pedicure or a massage. I had no idea what the inside of a spa even looked like. I kinda thought all that was a little self-indulgent and a waste of precious resources when more pressing issues, like raising kids, demanded pretty much every dime. I figured ‘self care’ was just code for selfish. HA! Did I change my tune!
In these two years I have slowly but surely been building myself back up. I am a work in progress--under construction. Some well-deserved pampering, with a spa day here, a pedicure there, a 90 minute massage here and there; every little indulgence helping me to reclaim my spirit and health after such a devastating loss. I have embraced my old passions, like taking up Zumba because I love to dance or joining a hiking group because I love the outdoors. I have begun reading novels again, after about three years of my reading material consisting solely of daily devotionals and spiritual salve that aided me tremendously through the pain of loss. I took a trip to Italy--my first trip in 13 years--which fed my soul and reignited my passion for travel.
I thought today, while hoisting a barbell over my head in a body pump class, how far I have come since losing him. Sure, I am lonely and miss him every minute of every day, but I am no longer that haggard mess who could barely handle going into the grocery store for milk after he died. I am rebuilding my spirit through self-care knowing that he is cheering me on from heaven (and chiding me not to be so hard on myself for falling down on the caregiver job here and there).