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 November 10

by Karen Purze

When the ER doctor called just as I was heading out the door for a holiday weekend away, I didn’t think about what life lessons I might be learning by putting the needs of others before my own. When my dad greeted me by rattling his water glass at me for a refill before I even walked through the door, my heart didn’t fill with gratitude. That Labor Day I spent moving my mothers’ belongings to a new apartment so she could have a fresh start after another summer spent in rehab? Well, let’s just agree my actions should speak louder than my words. 

In the ten years I spent helping my parents (that is, caregiving), I was dedicated, for sure -- but I was also occasionally disgruntled. I advocated for my parents through a dozen or more hospitalizations, each of which was stressful and ill-timed. I supervised four moves, each preceded by an urgent round of research and frenzied cost analysis. I made countless appointments and grocery runs and phone calls on their behalf. Over time and at their request, I took over the management of, well, “everything”: their household, health, financial, legal, and property matters. At times, I put their needs before my own, and sometimes I thought helping them with their lives would swallow my own. 

For ten years, I administered their life in addition to managing my own. And now, I don’t. Earlier this year, I held my mother’s hand as she died, just as I had held my dad’s five years ago in his final moments. 

I admit I didn’t love every minute of caregiving but I did do every minute out of love. Everyone talks about the burden and challenge of caregiving but I've found there were some “gains”, too. I learned new skills, yes. But I also made new realizations that have changed the way I live.

Here are a few of the lessons I’ve learned:  

Years, Not Months

If I’d known I’d be caregiving for years, not months, I might not have tried to superhero my way through those first few months after the initial crisis. If I hadn’t tried to fill every gap that appeared after my parents’ diagnoses, I might not have burnt out before setting boundaries and making backup plans so I could get a break. According to the Family Caregiver Alliance, the average duration of a caregiver’s role is four years (and only 30% of caregivers have a role that lasts less than a year.) At first, I made the mistake of thinking of caregiving as a short-term “project”, something with a beginning, a middle, and an end in sight. Caregiving is not a project, though. I learned that for me and so many others, it’s a phase of life. I never got the work-life balance right. I only survived by learning to integrate caregiving into my life.


Worrying Won’t Help

The night my parents told me of my father’s cancer diagnosis, I stayed up until 2 a.m. interrogating Google. When my mother had a stroke, I punished the search engine with query after query about her prognosis. Each CT, MRI, angiogram, another worry. I worried about what my life would be like without them and I worried that pressure from all the competing demands would crush me. I worried about keeping my job through so many days off and distractions and I worried my parents would hurt themselves when they wouldn’t accept more care at home. And never once did worrying change the outcome. Worry was stealing my time, robbing me of the only time in which I could truly make a difference: the present moment. Over time, I learned to “release the worry”, a phrase I first heard from caregiving expert Denise Brown. Once I learned to do what I could and truly let go of the rest, I was able to stay calmer in emergencies, focus better at work, and enjoy my family more. 


Opposite Truths 

One lesson that surprised me: even the most painful experiences are threaded with love and joy and humor and beauty. Like the Christmas we ate pizza in the cafeteria at the rehab institute, eight kids under nine years old exuberantly chasing each other around my mom in her new wheelchair. Or the day my dad hit the gong after his last radiation treatment, smiling wide but so weak he had to lean heavily on the wall as the picture was taken. That evening at the circus with my boys interrupted by the call letting us know my mom was on the way to the hospital, again. The prayer my aunt said over speakerphone in my mom’s final hour. These and other powerful experiences tinged with mixed emotions taught me a lesson I’m grateful to have learned: more than one thing can be true at the same time. I didn’t have to be “happy” or “sad”, I could be both. 


Bend, or Break

At the beginning of my caregiving years, my analytical nature caused me to look for answers where there were none to be found. I struggled to control and predict what was happening. When you build software, as I have for most of my career, there’s a satisfying sense of progress embedded in the activities. I kept looking for that in my family life, trying to figure out how we were going to stabilize the situation, to build on it. To make it better. And I couldn’t. Not through expert-level project management skills and not through worrying and not by trying really hard to do it all. I had to bend, or break. 

It was hard, but pushing past the worry and my need for control allowed me to reunite with a truer version of myself. One less focused on binary, black-and-white outcomes. More focused on meaning, and mission, and dreams. 

After my father died, I walked away from the full-time job I’d fought so hard to keep during the darkest, most chaotic moments of my caregiving years. I started a business, wrote a book, and made time for my family. I changed.

~~~~~~~~~

lessons learned from caregiving

“The worst” has occurred now, and the biggest worry of them all has been realized: both of my parents are gone. 

For ten years, I walked my parents “home” along a bumpy path. 

I shared their grief over every change in capacity, every test that didn’t go as they’d hoped, every difficult decision. All the thousand tiny cuts. Through it all, they never lost their impulse to care, or to connect with the people they loved, not until their very final moments. 

I hope the same will be said about me, when it’s my turn.

About the author

Karen Purze is the author of Life In Motion: A Guide for Gathering Life’s Vital Details, a workbook to help people get their affairs in order. She blogs about end-of-life and emergency planning at lifeinmotionguide.com.

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