Being a caregiver has made me a better doctor

Being a caregiver has made me a better doctor

I am a physician, an anesthesiologist. I care for the sickest of the sick every day – struggling NICU babies born only hours earlier, victims of major traumatic accidents, and critically ill patients with life threatening illness. In this job, I must both connect with the patient, but also maintain a distance from them at the same time. Dealing with life threatening situations each day requires me to remain unattached emotionally. No matter the outcome with one patient, there will always be another sick patient who needs my focus and technical abilities. While many years of medical training made me an effective professional caregiver, I was completely unprepared to assume this role in my personal life.

As with other momentous events in one’s life, I remember exactly where I was when I found out. I was delivering an anesthetic in operating room #1 during a long surgical procedure. It was 4pm and Molly’s appointment was taking too long. She didn’t expect it to be a big deal. It was just a small lump. I received a text, “They are taking a biopsy. They are concerned.” My heart sank. I opened up the radiology images on the computer, and then I saw it. My wife had breast cancer.

At that moment, my world crumbled. I felt trapped. I wanted to run out of the operating room and scream. I wanted to hug my wife. I wanted it to be a dream, a bad dream. But it wasn’t, and my wife, who was only 32 years old, was just beginning the most difficult experience of her life.

Molly had always been healthy – she never had a surgery or major illness. And like most healthy people, she took that good health for granted. Just as youth is wasted on the young, good health is wasted on the healthy. But now she had cancer, and I wanted to help heal my wife. I wanted to get rid of her cancer and make sure it never came back. I wanted to do something, anything to make things better. But despite my eight years of medical training, and three years of experience in private practice, I could not actively heal my wife. And I felt helpless.

So I did what I could. I held her hand as she woke up from her bilateral mastectomy. I washed her hair when she couldn’t lift her arms above her head. I emptied her wound drains and gave her pain medication when it hurt too much to get out of bed. I carried around our three year-old daughter even though she really wanted Mommy. I took many days off from work so that I could accompany her to every doctor’s appointment. We watched episodes of “Arrested Development” together during every chemotherapy infusion. I became a caregiver in the most personal and connected way possible.

I felt that I had to be the rock of the family, because it was the only thing that I could actively do. I wanted Molly to know that she could depend on me to take care of things, so that she could focus all of her energy on healing. And because I didn’t want to her to worry, I never told Molly how scared I really was. I never acknowledged to myself how scared I really was. I compartmentalized my fears about what might happen, and I pushed forward – exactly as I would do with my patients at work. As I was trained to do. But while this strategy works effectively with the strangers that I care for in the operating room, it proved to be less successful at home.

Being a caregiver for a loved one is extremely challenging both emotionally and physically. I didn’t feel that I could complain about the difficulties of this role because I thought I had it easier than my wife. I wasn’t the one with cancer. My body wasn’t being ravaged by chemotherapy drugs that left me without the energy to get out of bed. I didn’t have the right to complain. So I repressed all of my fears. What might happen if the cancer came back? What if it metastasizes? How would I raise our girls alone? But by harboring these feelings deep inside instead of sharing them, I was setting myself up for disaster.

After enduring two surgeries and four rounds of chemotherapy, Molly began to feel better. As Spring turned into Summer, her hair began to reappear, and her energy level increased. We didn’t have to worry that she would catch a cold amidst low white blood cell counts. She was able to hold our girls again, and she could wash her own hair. I could see that she was going to be okay, so I let finally my guard down.

I started to plan a big celebration for the one-year anniversary of Molly’s breast cancer diagnosis. Molly was happy to be approaching this milestone, and I was happy too, or at least I thought I was. But as the date approached, I started to have trouble sleeping, and I noticed many odd new physical symptoms – muscle fatigue and weakness, numbness and tingling in my fingers and arms, and palpitations. Instead of realizing that I had all of the classic symptoms of a generalized anxiety disorder, I became convinced that I had either multiple sclerosis or ALS because these were the only “physical” illnesses that could explain all of the symptoms I was experiencing.

I begged my internist for an MRI and other tests to confirm my suspicions. My physician was skeptical, but he agreed to send me to a neurologist who confirmed that I did not have a neurologic disease. Although I was relieved, I didn’t start to feel any better until I began seeing a psychologist, who helped me to recognize and treat my anxiety. Over several weeks of discussions, I acknowledged my fears about Molly’s cancer, and the feelings that I had repressed during her treatment. I learned to recognize the symptoms of anxiety and by simply recognizing its existence, the anxiety no longer controlled me and my symptoms subsided. Many months have passed, and my anxiety remains under control.

This experience showed me that while my body wasn’t sick, being a caregiver presented unexpected and often overlooked challenges. Caregivers may not need physical support, but they need just as much emotional support. Through this realization, I know that I have become a better doctor. I make sure that everyone who accompanies a patient or loved one to surgery has a chance to speak and ask questions. I listen more. I make eye contact and hold my patient’s hand. Although I was trained to maintain a professional distance from my patients, I am now more present than ever. And I know my patients appreciate this just as my wife did.

Scott Finkelstein is a pediatric anesthesioloigst and chief medical officer, Consano.

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  • Ashwin K

    It is inspiring to see how you viewed the entire happening, compartmentalized it and learned from it.

    • http://twitter.com/ConsanoScott Dr Scott Finkelstein

      Thank you so much, Ashwin.

  • Mona Kotecha

    This is very moving, Scott. Thank you for sharing it. The picture puts a personal touch and brings tears to my eyes. Bless your family, and your courage for speaking openly about your wife’s illness and your anxiety.

    • http://twitter.com/ConsanoScott Dr Scott Finkelstein

      Thank you, Mona. It has been quite therapeutic to write about, and empowering to share.

  • http://twitter.com/ConsanoScott Dr Scott Finkelstein

    Ron, I am so sorry for all that you have gone through. Thank you so much for sharing your own story. Knowing that we are not alone is so important when caring for loved ones.

    • Ron Smith

      Thanks, Scott. I like what C. S. Lewis says. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pain. Pain insists on being attended to. It plants the flag of truth behind the walls of a rebel fortress. If seeking to get through life with the most minimal (or even any) pain were any sort of real goal or purpose, what a terrible waste it would all be, wouldn’t it?

      There are no victories without at least the risk of pain. And yet a victory won in spite of pain is oh so sweet! After 36 years, Stacy of course means a lot, but breast cancer showed me how much more I could cherish her.

      :-)

  • carolynthomas

    This essay should be required reading for all docs – better yet, for all med students. We simply cannot imagine the toll that a life-altering diagnosis takes on both the patient and patient’s family unless we have walked a mile in those hospital booties ourselves. It’s what Dr. Ann Becker-Schutte refers to as “healthy privilege”. More on this at: http://myheartsisters.org/2013/04/13/healthy-privilege-when-you-just-cant-imagine-being-sick/

    You will certainly be a better doctor now because of this overwhelming personal experience. You’ll likely be more empathetic to the realities of what family caregivers are going through than you ever could have been before Molly’s experience. And just as important, you’ll be more attuned to the debilitating – yet under-recognized – effects of the mental health fallout that’s so often the inevitable companion to serious illness.

    Thank you so much for this. I hope Molly (and you) continue to heal and thrive.

  • Molly_Rn

    I wish you and your wife many healthy happy years together. Don’t forget to take care of yourself too.

    • http://twitter.com/ConsanoScott Dr Scott Finkelstein

      Thank you, Molly! We are already planning a big celebration for our 10 year anniversary next year!

      I am trying to make time to take care of myself as well. Hard to do between working in the hospital, working on our nonprofit, and spending time with my daughters, but it is so important to also carve out some “me time.” It allows me to be more “present” during everything else. Thanks again for your comment!

  • Terry Klingberg

    It’s great to see a man share about caregiving and the emotional toll it takes.. I cared for both parents in their home where they both passed away.. its the hardest job I ever loved.. we made friends, came full circle, and I fell in love with my Dad all over again.

    • http://twitter.com/ConsanoScott Dr Scott Finkelstein

      Wow, Terry. Thank YOU for sharing. So glad your experience caring for your parents was a positive one. So hard, but so worth it. And I’m sure your parents were incredibly grateful to have you there for them. We are not alone.

  • rs986

    I am glad that you two have survived what sounds like a harrowing year
    and have come out with “life lesons” as well. You sound like an
    absolute prize “purse holder”:
    http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/will_he_hold_your_purse/

  • Ronda

    What a wonderful love story. You put your wife first in your life. That is what we are subpose to do “in sickness and in health”Yet as well you needed to have your feelings, fear, exhaustion, the unknown . To express all this bottled up to someone. A friend or in the health profession field. I think women are more emotional, therefore, we talk. As men keep things to themselves. God bless you both. May you have many bright and healthy days ahead.

    • Dr Scott Finkelstein

      Thank you for your kind words and support. I am so grateful that this whole experience has helped us to grow closer.

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