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Notes for the Journey
Thoughts on living and dying, written by an end of life doula

The Art of Carpe Diem: Finding Light in the Midst of a Terminal Diagnosis

Updated: Aug 19, 2023

This is a story of poignant beauty. But I didn't see beauty on day one. Not by a long shot. It's coming, though, so hold on. I was a stay-at-home, grad student mom of a toddler when my mother was diagnosed with stage 4 lung cancer with "maybe" a year left to live. My parents had temporarily moved to town, across several states, to care for our young daughter while my husband and I were researching and writing our dissertations. We were so grateful - it was incredibly generous of them to upend their lives to help us balance ours, to step us towards graduation. That was the intention, anyway, but it didn’t work out that way. Turns out the unforeseen benefit was so much greater.


My parents moved and rented an apartment where they cared for their granddaughter during the days while we two studied. But then, after several months, mom started getting noticeably short of breath. None of my siblings lived anywhere close so I started bringing her to a series of doctors. Even though it’s been almost 20 years, I remember that one doctor’s office in particular, so very clearly - the place where we got the gut-wrenching news of Mom's diagnosis, which in my mind quickly transformed into calculating a prognosis. When the doctor stepped out, I slipped into the hallway where I frantically called my sister, in tears. That moment of panic and confusion felt like the floor fell away and I was flailing about, yet trying to hold everything together. It felt like a beginning of something, a terrible something that I didn’t want. I moved into medical manager mode, suddenly thrust into a crash course on cancer. It was overwhelming to juggle with a toddler and grad school, especially when Dad simultaneously started his own medical issues along with his own parade of doctors. I managed both of them, I managed *everything* it seemed but we got into a rhythm. Soon, my parents and I regrouped and consciously worked to set the tone to one of joy. At least I remember it as happening “soon.” I don’t know that the actual timeline matters much, though. Really what lives on strong in my memory is the joy and beauty that flourished despite the unimaginable struggle. Maybe that’s because I didn’t expect to find beauty in all those thorns but Wow…it still astounds me. Mom always lived with such a beautiful light in her eyes that we knew she would somehow face this with that same light. She inspired us. We all made a conscious effort to infuse beauty into her final journey, into our final journey together. Seizing every moment, or at least many moments, and transforming those passing breaths and experiences to joy, beauty, and peace. Many people, when they heard of the diagnosis, would ask us what they could do to help so we started what we called a "carpe diem fund" and invited people to donate to “making moments” for Mom rather than sending meals or flowers. That “carpe diem fund” led to a “carpe diem year” with an entire framework shift for us all. It’s like we all learned together to see and create beauty every day, especially where we initially found none. For example, one day, after an early-in-the-process hospital visit, my 2 sisters and I were helping Mom get her pants on preparing for discharge and the awkward process was so hilarious, Mom was crying in laughter. We all were. She joked through the laughter, “How many Barber girls does it take to get Mom’s pants on??” and then, later, I was waiting at the curb for the car with Mom still in her wheelchair. We were quiet for a moment when she, and then I, suddenly burst into laughter again, left over from the pants application comedy. Turning those thorns into beauty.


The last year of my mother’s life I now look back on as among the most poignantly beautiful years of my life

Together we learned to let the carpe diem way of thinking infuse our lives and caregiving, and, I’ll tell you, choosing that thinking transformed everything in ways I could never have imagined. Who ever could have thought that the last year of my mother’s life I now look back on as among the most poignantly beautiful years of my life? Turns out living a carpe diem year brought healing to us all. We now can look back on those days, focusing on the happy memories instead of the difficulties, even though we had those too. I think it’s like birthing my daughters. It was painful and difficult but now I look back on the births remembering the joy more profoundly than anything. I guess it makes sense that death isn’t so very different.


So, through family and friends, we gathered a modest carpe diem fund. We used the funds to go and do something fun, playful, special or different. We especially looked for things that Mom had never done before. One day for example, my sister came to visit and we went and got our nails painted, a first for Mom, then afterwards we went out to a girl's lunch. Another time we went to a Ronan Tynan concert at the local university (he’s an Irish baritone who was really breaking out at the time). We somehow ended up with fantastic balcony seats right above the stage and at the opening song, I glanced at Mom and I remember she had tears in her eyes, reacting to the beauty and power of the music. At the time, I bought the music CD to that concert and I still listen to it, remembering with my own tears the vision of Mom’s powerful reaction to that song. Another day we went to the performing arts center and saw the impressive touring Broadway musical of "Mama Mia," another first. Mom chose a "no more chemo party" to celebrate the end of her difficult treatments. She was tired of doctors and wanted to focus on life. She didn’t “give up” but rather she made another empowered, active choice. We all were totally onboard. My sisters traveled to town for the party. We put up dollar store flowered vines all over in her apartment, baked a “no more chemo” cake and invited friends over. I didn't know it then, but this was a ritual - a way to mark a significant event, often an ending or beginning. An end-of-treatment ritual is a powerful way to signify the beginning of a new path, like a fork in the road. As Mom put it, we were basically thumbing our noses at chemo and cancer and turning our attention fully towards capturing the moments of life, fully towards carpe diem.


The moment making took on a new energy. For me, I no longer had to be medical manager so I could put a lot more of our time together towards connecting with her and celebrating with her. This was about 3 months before she entered hospice so we really did feel free. I am forever grateful to her for having the courage to choose to put her focus and, therefore, all of our focuses on living instead of on just not dying.


It’s very important to emphasize that carpe diem is not about the money but rather about an attitude. We did definitely enjoy a couple extravagances like the shows but many of our carpe diem moments didn’t cost a penny. One afternoon we did a spa theme and my young daughter was the foot masseuse. Other days we’d surprise her with a handful of wild blackberries or a bouquet of wildflowers. My sister especially says that for her, the carpe diem way of thinking really opened a new and playful relationship with Mom and they began teasing each other over silly things. The no-cost possibilities are really endless like maybe someone could do a stand up routine in the living room or a family dance party where chair dancing counts. Start with an idea list and see how that transforms into a paradigm shift for the whole family.

Carpe Diem Days also don’t require a certain activity level. You can seize moments from a hospice bed even. Some days, when Mom had more energy, we would go out for an adventure, but many days we stayed home when she needed more rest. On those days, we carpe diem-ed from the couch. Remember it’s less about your activities and more about your attitude. Fit it in around all the corners of life.

And then sometimes you have the opportunity to go big. Mom's birthday was coming up in April and I concocted an elaborate, yet inexpensive, surprise birthday party for her since she'd never had a surprise party before. We knew it would be her last so I tried to go all out in creativity. I organized with my Aunt Claire who lives in Mom's hometown, 6 hours to the north, to be the host of the surprise party. As I continued brainstorming and planning, the plot grew thicker. The ruse was that we were just going to visit Aunt Claire and other relatives for the weekend. So my husband, daughter and I drove up with my parents to Aunt Claire's house. Unbeknownst to Mom or Dad, all my other 4 siblings, who lived all over the country, were also sneaking into town. One after the other, in fairly quick succession, they showed up at the door with their families and every time Mom was shocked and overjoyed. My younger brother even was talking to her on the phone and apologizing for not being able to come as he walked into the house with his family to surprise her (remember this was in the early days of cell phones). And this was only the first day. She thought the entire surprise was a family reunion of just the immediate family but that was just Phase One. We slept at relative’s homes and the next morning, after brunch at my uncle's home, we surprised Mom with Phase 2: a professional family portrait session. She had been wanting an updated family photo for years. We had all brought matching clothes as was the thing to do back nearly 20 years ago. Before the trip, as we were packing for our "visit," we had snuck in Mom's blue top and her tan top to go with the different photos. We all laughed and joked and even were singing to entertain the littles in between shots. That's such a treasured photo now. It's our last photo as a family.


After the portrait session, we surprised Mom with the initial steps of Phase 3. My sisters, outside the portrait studio, put a blindfold on Mom and she loved the suspense. They started driving her all over the local rural roads of that part of Northern Michigan. Sometimes they would jump out and pretend to move a log out of the road or something to make it seem like they were going way out of the way, adding in fun and laughter at every chance. In the meantime, the rest of us went ahead to the surprise birthday house at Aunt Claire's. Besides our families, probably about 100 other people were hiding inside that garage – old school classmates, cousins, friends, my mom's brothers and sisters, nieces and nephews - everyone came together for Mom from all over.


As we all were stationed in the closed and party-set garage, my sisters and Mom arrived and parked in front. We shushed each other. Mom was still blindfolded when she came in, led by my sister, questioning what was going on and we all stayed completely silent - quite a feat with over a hundred of us! In a moment my sister took off the blindfold and we all yelled, "Surprise!" Mom was in total shock and so excited and so happy seeing so many faces that she hadn't seen for years. We all began hugging her. It was an astoundingly beautiful moment. One that I will always treasure and even one that I'm crying through now as I'm writing this. Good tears, tears of poignant beauty as I relive that surprise. The events of that day were important and beautiful then. Now they are truly a treasure of life, one of the best days of my life and her life. We did that day right. But I'm getting ahead of myself. We proceeded to have a party with a potluck and celebrations and laughter. Now for Phase 4, the icing on the cake. Mom always loved receiving mail, especially handwritten letters, so before the party, I had collected over a hundred letters from all of those who couldn't attend in person. I collected letters from everyone I could think of - anyone who wanted to wish her well. So at one point, I gathered all the party-goers and I presented her with yet another surprise - her big basket of letters, tied off with balloons.


After our second night and a farewell extended family breakfast, we started our drive back, Mom on cloud nine. The weekend, with so many moving parts, all came together beautifully. It was perfect. It honestly couldn't have gone any better and it really sustained us all.

Months before the party, we had asked Mom what is one thing she would love to do and she fantastically responded that she wanted to try a hot air balloon ride. I was so excited planning that carpe diem splurge for her. First question - where would be a good place for hot air balloon ride? I knew it had to be soon and, after some research I learned that year in the spring there was a grand blooming of wildflowers in the Arizona desert. So our immediate family (all 14 of us) flew out to Tucson and rented a whole bed and breakfast hacienda in the desert when the desert flowers were in full bloom. We left for a hot air balloon ride over the Arizona desert at dawn. Mom's face just radiated joy and wonder. At dinner in the hacienda, she led us in a champagne toast to life. That champagne toast really said it all in a nutshell: here’s to life and all its marvelous bubbles.


To learn more about Carpe Diem Days, especially at the end of life, check out gentlejourneydoula.com or email us as gentlejourneydoulainfo@gmail.com

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