The Caregiver and the Hero: Who’s in the Driver’s Seat?

Vic in the stem cell transplant unit

Vic in the stem cell transplant unit

Six weeks after my husband’s stem cell transplant in 2007, he drove our Subaru west on the New York State Thruway. A stocking cap covered his hairless head. I sat in the passenger seat. His jaw muscles popped with tension.

“Let’s make a list,” I suggested.

“I hate lists,” Vic said quietly.

“It’s important to write down your symptoms before we get to the doctor’s office. You love being a model patient. You’ll say you’re doing well and forget the problems. Then I have to correct you and tell the truth.”

WareMans

two cancer heroes: my brother & Vic

Some of us fall into despair when we’re reporting symptoms to our doctors. Others become stoic heroes who minimize every discomfort.

Sometimes my prompts slipped close to nagging, but without them, Vic forgot to report issues that exploded into consciousness at 3 a.m. and chased away his fragile sleep. What could he do about foot cramps and swollen legs? What about the numbness in his hands? Was it OK to have his teeth cleaned? Could we stop sterilizing everything in the kitchen?

IMG_4892_face0Vic drove in the slow lane. Flapping windshield wipers turned salty splats from passing trucks into arching streaks. When Vic went through chemotherapy six months earlier, he  drove the two hours to Strong Hospital in Rochester and I drove home after his treatment. It became a habit.

The stem cell transplant was more debilitating than chemotherapy. He was getting stronger, but I wasn’t sure it was safe for him to drive two hours. For him, like many of us, driving was power and independence. He didn’t want to give up his turn at the wheel.

“What do you need to ask Dr. Fisher?” I asked.

“I want to know when I can stop taking that disgusting yellow anti-bacterial stuff.” He paused. “I want to know what to do about my numb feet.”

Vic exercising during stem cell transplant

Vic exercising during stem cell transplant

I wrote these down in my notebook and waited. “Anything else?”

“Yeah, when will my hair grow back. I’m cold.” He shot me a teasing sideways glance and grinned. I reached over and stroked his thigh.

As we finished the list, red lights flashed behind us. A siren screamed. Vic groaned and pulled over. A police car tucked in behind us. Vic rolled down his window as the cop strode up to the car like a gunfighter, pelvis forward, shoulders close to his ears, and elbows lifted out to the side. Vic put his hands on the wheel in plain sight.

“What is it you don’t understand about construction zone signs?” the cop growled.

“Sorry, officer,” Vic said. “I thought I was driving under the speed limit.”

OLYMPUS DIGITAL CAMERA“It’s 45 miles an hour here and you’re going 57. What’s your hurry, buddy?”

Vic hesitated. He never used illness as an excuse for screwing up, but he liked to tell the truth. I wondered what he’d say.

“I have a doctor’s appointment at Strong Hospital to find out if I still have cancer in my body. I’m sorry I didn’t see the construction signs.”

The cop leaned his jowly face into the driver’s side window and bent low to look in my eyes.

“Do you drive?” he asked in a quiet voice.

“Sure,” I said.

Spring 2008

Spring 2008

“Well, then, get in the driver’s seat.” He opened the driver’s side door for Vic. I scrambled over the hump between the seats and adjusted the seat and mirrors. Through the back window, I watched them speak and nod to each another. Then, the cop shook Vic’s hand.

“What did he say?” I asked when Vic was in the passenger seat.

“He said, ‘Good luck, buddy. I hope you get good news. But, please, will you let your wife drive?’”

***

Have you been or are you a caregiver? Was it hard to figure out when to take over and when to let the patient keep the little power they had left? For other articles about caregiving when someone you love is ill, see Betrayal of the Body or The Cancer Survivor. If you’re a caregiver, I suggest The Caregiver Space where you’ll find many helpful resources.

33 Comments
  1. You certainly do know how to tell a story to make a point, Elaine ~ and this one is told so beautifully. I can’t imagine how hard it was for both of you that day for Vic to relinquish the wheel . . .

    • Thank you, Marty. This is such a common issue whether a patient is physically ill or has dementia. Vic drove again the following summer, but when cancer returned, he surrendered the wheel gracefully. The policeman made his point!

  2. I’ve been a caregiver to my mother and it was very hard to decide when to step in and make change happen. It took several tries for me to get her to give up her drivers license. She was very stubborn. But I also understand that giving it up was a major loss for her. We just need to be patient sometimes and wait for something like a cop to get things moving. Fortunately I got it done before she hurt herself and those who might have been in her way.

    • I had that experience with my mother-in-law, Joan. She fought hard even though she was going blind! Vic got this message from the universe. In time, he drove again. Then later, without a nudge from a cop, he accepted the passenger seat or even a prone ride on a mattress we put in the back of the station wagon. We’ll all have to go through this. I couldn’t live where I do in the country without being able to drive.

  3. You are the hero, Elaine.

    One question: Did you have the presence of mind to snap the “trooper” photo on site, or did you catch it later? Either way, awesome post!

    • Yes, we both were, Marian. The photo is courtesy of wikipedia. I didn’t have the presence of mind or the nerve to take a photo of the police car that day.

      • So I thought. But it wouldn’t have surprised me if you had seized the moment.

        Your writing is wonderful; I always feel drawn into your story one detail at a time.

        • Thanks, Marian. I didn’t do lots of photography when Vic was alive, although I took a series of photos of him during the stem cell transplant and used a few of those in this article. My focus on photography began as an exercise in searching for beauty after he died.

  4. What a poignant and relatable post Elaine. Everything you wrote I could comment on, but I’m going to say that I do believe men have some type of mechanism in them to play down their symptoms sometimes when it comes to doctors.
    My husband reports his symptoms to me because he’s gotten used to being grilled. I need to do this so I can keep a handle on what becomes the new normal and what is a new flag. But when we go to the doctor’s he omits many things that I take my list out and share.
    Also, the driving thing – over the years I’ve developed a lot of anxiety when it comes to driving in this crazy city. I drive in close perimeters and leave the bulk of the driving to my hub. But in these past long months of his illness, it was very strange to step up and become the chauffeur. So I hear you on all fronts. 🙂

    • Yes, my brother was the same. It was maddening for all of us. I’m trying to think of an example of a woman who does this, but I can’t think of one. Hmmmm…
      I’m laughing and nodding at the word “grilled.” Yep.
      Vic and I usually shared the driving–about half and half. By the end of his life, he was never in the driver’s seat. I put a mattress and warm blanket in the back of the station wagon for Vic and he often dozed while I drove.

      • I told you a few years ago what a warrior woman you are and I stand by it. <3

        • I have that quality, Debby, but I feel like a weakened warrior woman these days–but I’m doing all I can to recover and get stronger for whatever comes next.

          • As long as we keep getting back up Elaine, we’re still in the fight. 🙂

  5. I want to know, am I the only one who chuckled deeply when reading this story? Elaine, your sense of humor came through and I only hope you felt it, too, if not at the time, then at least in retrospect. Not a funny time for a run-in with a trooper, but everyone rose to the occasion! Love, Myra

    • You’re not the only one, Myra. I found this incident very funny as well as psychologically revealing–the resistance, the unconscious speeding, the relationship dynamic, the cop who looked so tough at first but became so kind. Vic knew he’d been zapped and laughed at himself. I’ve been writing about experiences in India, all with a sense of humor. Yes to more humor!

      • Hooray for humor, indeed! And, you did a wonderful job (in your response) identifying some of those twists and flips in life that make us laugh and also help to change our perspective. I can practically sense Vic’s rueful twinkle! It seems these situations occur almost universally and bring with them an opportunity to enlighten our load if viewed through the right lens? More love, Myra

        • You know how much Vic loved synchronicity. Although he didn’t love the message, he could laugh at himself and the messenger. The car keys are always a big deal–at 16, at 90, and in illness.

  6. Dear Elaine,

    I love how you use simple, quotidian details, like the slapping wipers and the officer’s body language, to establish place and mood. I could feel the tension your in the car, the fear of the unknown, the determination to overcome adversity, the anger at having your lives overturned. All held within the simple act of driving in the rain with someone you love more than life itself. Thank you, once again, Elaine, for showing us how we can embrace life even when it seems impossible. It’s the ordinary details that give the story its authentic, touching, and familiar feel. I admire your skills…so many of them!

    • Thank you, Ava. Vic loved synchronicity, plus he had a wonderful sense of humor. This experience was a perfect way to get the message across. I loved the way the officer melted from feeling like a threat to being a helper and sharing manly wisdom–the thing we want from policemen but sometimes don’t get. That day, we learned that Vic had a few active lymphoma spots in his lungs. It was the beginning of a strong life-filled six months that ended with a big crash when those spots took off. And when cancer came again, he soon stopped driving.

  7. Beautifully told, Elaine. I remember when it became time for Adrian to give up driving–it was very hard for him to let go. Finally an accident that hurt no one but the car convinced him it was time–not to mention a doc who said, “If you don’t stop driving, I’m not going to be your doctor any more.”

    • Thank you, Lynne. You’ve been in that place of holding out your hand for the keys to the car. We did it with our kids and with our husbands. Fortunately, Vic stopped driving before any thing too exciting happened. He knew he’d received a clear warning and acted on it. That’s the difficult problem with dementia patients. They do not know or they only know sometimes.

  8. My mom became the caregiver for both my grandma and then my grandpa as they aged. Now my parents are both nearing the need for extra help as well. It’s a strange time of adjustment and neither of them really want to talk about how they need extra help now.

    • It’s hard to get the conversation going with some people. It wasn’t so difficult with my husband after our long history of straight talk. It was harder with his mother (100 years old and still going strong), so I had to resort to ultimatums. “You accept help or I’m out of here.” She doesn’t protest anymore, but there was that initial painful surrender and it can go on for months. Thanks for commenting, Jeri.

  9. I love this story, Elaine, for its touch of humor admist the pain.

    My own experience of marriage is that although my husband listens to me, the same words may come across differently when someone else says the same thing. Suddenly the lights go on.

    That police officer was a messenger who was able to articulate what neither of you could at the moment.

    • Thank you, Ann Marie. This transitions are not clear cut and it isn’t always easy to agree, but Vic and I were good at talking things through. In this case, the policeman was a little ahead of us as you’ve noticed. We both loved the humor of the situation. Vic was good a laughing at himself and at life. It was also nice to have an experience with a compassionate policeman. I’ve had a few of those recently.

  10. I’m late in responding to your post Elaine – I read it a few days back. I’m pleased to read it afresh again and it touched me now as it did then. How lovely it is to hear of the humanity of this cop, responding so positively to Vic’s humanity. Thank you for this lovely description of a slice from your life …

    • Thank you, Susan. It was one of those moments when clarity breaks through the muddle of indecision and confusion. Thanks to that cop. If he’d been aggressive and pushy, it wouldn’t have brought good results. His softening softened all of us.

  11. Love the story, Elaine, and I agree with other readers who recognize your skill in weaving the details so deftly that I followed you all the way to the driver’s seat.

    My mother at age 89 has just given up driving. She hated to turn over the keys, but she loves having people check in on her every day as the upside of losing some independence.

    • Thank you, Shirley. It was a small moment that became a defining moment. He was much better than my brother at giving up the car keys.

      Vic had to threaten to call the police when his mom was 92 and losing her vision. He told her he would insist they give her a driver’s test. She knew she wouldn’t pass it so gave up driving when we moved her to Ithaca. We’d tried to convince her for years, but had to resort to power tactics. She was mad at him for a long time. She seems content now with health aids and other women who live in her senior residence around most of the day. We learn to adjust, don’t we?

      I loved the photo you posted this week. A true unposed laughable moment.

  12. I could really feel and relate to Vic on this one, Elaine. How hard that must have been. And to be stopped by a cop – well, good thing you two were so close and communicating. If it had been me, or some of the dear folks I have had the privilege to be caring-giving for, there would have been sparks, maybe blows, not to mention unprintable language. Grace is not part of my family’s patterns.

    • It was hard and a constant decision to be made. He stopped driving to Rochester for appointments until he had fully recovered from the stem cell transplant, but that recovery lasted less than six months. Then I did all the driving again. The cop incident became a joke between us. “I’m calling the cops.” He was good at surrendering when he knew he was cornered, although in he fought for every bit of strength and independence. He kept trying to keep physical strength until about a month before he died. He gave up exercise around the same time he quit eating more than a few bites a day. He wanted to live and quietly went about doing that.

  13. Such a touching story practically everyone can relate to. Isn’t it interesting how the most ordinary moments can be filled with poignant lessons and meaning if we take the time to notice? I didn’t think to record the small moments of everyday life during my mother’s last years. But if I ever go through this again, you can be sure that buying a special notebook will be one of the first things I’ll do.

    • I loved it most when the lessons came with a sense of humor and a little transformation. I wish I knew the name of that cop so I could write him a thank you note.

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