A 90-year-old woman has opted out of cancer treatment to spend her remaining days on a once-in-a-lifetime road-trip with her family. The woman’s name is Norma and she is from Northern Michigan. Just two days after loosing her husband Leo, she found out she had uterine cancer. When her doctor explained that they could operate on the tumor and then put her through radiation and chemotherapy treatments, Norma politely declined. Instead of treatment, Norma decided to spend her last days on the road with her son, Tim, and his wife, Ramie in an RV. Ramie says she hopes the story will encourage other families to discuss end-of-life options.
Ramie and I had had fifteen opportunities to talk to my parents about their wishes. That is the number of times Ramie had joined me on my yearly pilgrimages to their rural Michigan home. The first year she came with me, Mom and Dad were in their mid-seventies—perhaps a little too young then to have this talk. Honestly it never dawned on us. They were still very self-sufficient and vibrant, after all. But as they aged into their eighties, I began to see a shift in my parents’ capabilities. They moved slower. Mom could not manage the stairs to the basement anymore, so Dad had to do the laundry. Cooking healthy meals became a hassle for Mom. Getting the mail from the box across the street became more of a chore for Dad. But they soldiered on. We would do our best to help them out in the week or so we visited. I would work on the deferred household maintenance while Ramie shaped up the yard. I removed loose rugs and installed smoke/CO2 detectors. I installed rails and grab bars. I made a year’s worth of dinners and froze them in the upright freezer I brought up from the basement. I did everything but have “the talk.”
PRESQUE ISLE, MICHIGAN
Life is fragile. We all say that, but most of the time the truth of it does not move from our head to our hearts. We take people for granted, ignore aches and pains, do not say the things that we know we need to say, putting them off for a later time. And what Tim and I were continually putting off is this: talking to his parents about aging, and particularly how they wanted to live the ends of their lives. Why was this topic so hard to bring up? Why had we continually chickened out, the questions we wanted to ask remaining stuck in our throats? What would we do when that moment came and we had no choice but to face their mortality—and ours?
It was with firm resolve to address some of these questions that we pulled into the driveway of my in-laws’ Presque Isle, Michigan, home for our annual visit. We were determined that this was going to be the year we finally found the strength to broach the subject, but as is so often the case, a crisis hit us before we had time to do any talking.
Tim’s mother, Norma, usually greeted us, letting us know what kind of cookies she had baked for us. Tim’s father, Leo, often helped him park the trailer. But during the time it took us to back up the Airstream along the south side of the asphalt driveway, neither had emerged from their small brick home.
We did not need to say it to each other, but we were both worried.
Walking swiftly, we climbed the handful of steps that led to the side entrance, opened the door, and proceeded through the mudroom and into the eat-in kitchen. Something was burning.
And something was wrong—very, very wrong.
No one answered.
Tim switched off the oven without looking to see what was in it.
One of Leo’s many clocks began to chime, out of sync with the real time, then another and another. The grandfather clock, the one Leo meticulously wound every Sunday, was idle. A NASCAR event blared from the living room television, but the chairs where Leo and Norma usually sat were empty. We made our way to the back of the house.
That was when we saw them in the hall, making their way toward us from the bathroom.
At first sight, nothing appeared awry. But then we noticed that Leo was hunched forward, with his arm around Norma’s shoulder, his face contorted in pain. My tiny mother-in-law strained to hold him up, balancing herself with a cane in her left hand.
They inched toward us. With each step, Leo cried out, not acknowledging us.
We rushed forward. Tim wrapped his arm around him. I did the same with Norma.
“Mom, what happened?”
“Dad, talk to me. What’s going on?”
“When did this happen?”
“Watch the rug! Pick up your feet.”
“Hang on to me.”
“Dad, I got you.”
“Everything is going to be okay.”
“Let’s get you in your chair.”
With Leo whimpering and wincing, we shuffled toward the living room. Quickly, I settled Norma into her chair, but it took more effort and much more time to settle Leo into his. Another clock chimed when it should not have. The television continued to roar. I grabbed the remote, fumbling with it; it was unfamiliar to me. Where was the mute button? Finally, the television went silent.
Normally a happy, jovial guy, Leo moaned and, at times, wailed. We brought him pillows and helped him shift positions, but none of it relieved his agonizing pain. Tim and Norma retreated to the kitchen, where they talked quietly. I hovered near Leo, hoping against hope that I could find a way to make him comfortable.
Leo looked up at me and said, “Something is really f*cked up.”
In all my years of knowing him, he had never used such language in my presence. Those few words told me all I needed to know.
We never even had time to unhitch our Airstream from the truck. Three days after we had pulled into the driveway, Leo lay on his side in the fetal position in a hospital bed, his organs failing. The Fentanyl patches he was using to control his unbearable back pain—the result of what we eventually learned was a compression fracture—apparently pushed his body chemistry out of whack, and the doctors could not bring it back to order. He appeared so uncomfortable and alone. Norma was smaller than she had ever looked, dwarfed by the reclining hospital chair next to Leo’s bed. She was silent.
Tim crawled into bed with his dad, spooning him. I handed him a damp cloth, and he used it to gently wipe Leo’s brow. Repeatedly, Tim told him, “It’s okay, I’m going to take care of Mom. I love you. Everything is going to be okay.”
After some time, Tim took a break and I crawled into the bed with Leo. We did this off and on that morning until Norma whispered to me, “Can you take me downstairs? I have an appointment at one o’clock for some tests.”
I had no idea what the tests were for. In the elevator on the way down, she mentioned she had had some blood in her urine. I suspected there was more to it than that because I also noticed the sanitary pads tucked in her purse. Clearly she was bleeding, and having reached menopause decades before, she should not have been. I stayed in the waiting room, and when she emerged from her tests, we returned to Leo’s room. Norma made no mention of the procedure. In that moment our priority was Leo, so Tim and I did not push the issue with her.
As the week progressed, we learned that Norma needed follow-up testing, including a transvaginal ultrasound. With her husband dying just a couple of floors above her in the hospital’s hospice wing, Norma lay on a paper-covered table while a technician inserted an ultrasound wand. Her entire body seemed to contract inward. She was small, and humiliated. I stood near the technician and watched as she circled the display screen over and over again with a stylus and saw what looked to be a large mass on Norma’s uterus. “Unbelievable,” I murmured to myself. Here Leo was dying, and from what I was seeing on the screen, Norma had something that looked like a tumor. From her vantage point, Norma could not see what was going on and was unaware of what I had just seen.
I took a deep breath before I told Tim what had appeared on the monitor that afternoon.
Leo was soon transferred to a hospice room in a local nursing home. Two days later, after we had sat at his bedside for six hours, an exhausted Norma insisted that he was well taken care of by his faith. “We can leave now,” she said. We all left knowing that this warm July day would be Leo’s last. No sooner had we returned home than we got a call from hospice telling us that he had died at 5:50 p.m. Right at that moment, a broken ship’s clock—a gift to Leo from Tim’s late sister, Stacy—started ticking again.
We had Leo’s remains cremated, and we buried his urn next to Stacy’s in the family plot a few paces from Uncle Ralph at the township cemetery. We were in shock and grieving.
It was not yet official, but Tim and I also knew in our hearts that Norma likely had cancer. As we lay in bed in the Airstream, we talked about our options. Neither of us wanted the same ending for Norma as we had seen Leo experience. His last days in a busy, noisy hospital were far from pleasant. In fact, they were excruciating for him. We both worried about what would happen if Norma went into a nursing home. She loved being outdoors. How would she exist inside a facility with a locked front door that required a code to get out? How could this very shy woman ever share a room with a stranger? We had seen the institutional food served in many of these places. There was no assurance she would have the quality or variety of life she was used to, nor the independence or anything that was familiar to her. Our intuition told us that Norma not only needed but also deserved freedom, autonomy, and dignity, and to us, the nursing homes we had access to represented the opposite of those values.
Norma is pictured above making friends with a spotted pig.
If Norma wanted to kick back at the end of the day with a beer or a glass of wine, we wanted her to have that luxury. If she wanted to leave the facility for any reason, we wanted her to be able to do it. If she wanted to eat breakfast for dinner or walk barefoot in the grass, so be it. We also wanted her to have the chance to smile again.
We looked at each other and, simultaneously, we said, “We need to see if she wants to come along.”
We had no idea what we would do if she said “Yes.”
The following day, the three of us sat down at the kitchen table to have some lunch.
“Norma, we don’t know what the doctor is going to say about all the tests they have been doing,” I said between bites, “but I’m wondering how you are feeling about how you might take care of yourself now that Leo is gone.”
“I don’t know what to do,” she said, sounding feebler with each word. “I can’t live here by myself. I know that.”
Tim chimed in, “Well, Ramie and I have been talking about that too, and we wouldn’t feel good about you staying here by yourself even if you had people helping you. We looked into homes and we can get you on a list either here or where Ramie’s mom lives in Pennsylvania.
“Or, we were thinking,” he continued, “if you would like to live with us on the road, we could get a bigger RV.”
“While coming with us might seem like a crazy idea,” I interjected, “it’s no crazier than spending the rest of your days in a nursing home. If you want to come, we’ll take you anywhere you want to go.”
We told her she did not have to give us an answer right away. “Just think about it,” we said.
The next person to speak was Norma. She quietly said, “I think I’d like to come along.”
The next morning, we sat crammed in a small examination room with a gynecologist and a medical student shadowing him. We had spent the past two days after Leo’s death moving from doctor to doctor and from test to test. The ob-gyn was the last one to see.
A handsome man in his thirties, the doctor told us what we already knew: Norma had a cancerous mass on her uterus. From his perch on the edge of the exam table, he looked down at Norma, who was sitting in a hospital wheelchair, and then launched into an assumed close: “So we’re going to schedule you for a hysterectomy, then radiation and chemotherapy. You will recover in a rehabilitation facility, and it will likely take a few months to heal.”
Although he gave Norma no other options, he finished by asking what she would like to do. She locked eyes with him and, with as much conviction as she could muster, said, “I’m ninety years old. I’m hitting the road.”
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Excerpted from DRIVING MISS NORMA: One Family’s Journey Saying YES to Living by Tim Bauerschmidt and Ramie Liddle. Copyright ©2017 by Tim Bauerschmidt and Ramie Liddle, published by HarperOne, an imprint of HarperCollins Publishers. Header photo credit of Leo and Norma: Ramie Liddle.