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Caregivers' Guide for Bone Marrow/Stem Cell Transplant
Tackling the Challenge: Caregiving from a Husband's Perspective
by Chris Johnson
"You have Cancer."
When you first heard those words come out of the doctor's mouth concerning your spouse, child, parent, or loved one, you probably marked it as one of those days when your life changed forever. Although not the patient, I abruptly moved into a world where I did not speak the language, often felt overwhelmed by the number of decisions to be made, and within a short time, assumed a full schedule as primary caregiver.
After 25 years of marriage, I felt a wide range of emotions. Among these strong feelings, I experienced a huge sense of loss of control. One close friend said, "I feel like our lives have been hijacked." At the highest level, it goes to loss of control over your destiny. At the most basic level, it goes to what you can eat, drink, and think about day and night. The difficulty and strain of dealing with many of the medical treatments is woven throughout all of the experience.
One of the most promising, as well as challenging treatments for selected cancers and other diseases is a bone marrow/stem cell transplant (BMT). When my wife and I first heard the diagnosis and treatment options for her, we almost fell out of our chairs! BMT is a demanding treatment, but it offered us hope. Still, there is, with a BMT, like other treatments, that loss of control. It included an extended hospital stay and convalescent period among many other inconveniences that accompany the procedure.
The one positive aspect of a BMT that stood out in my mind was that the patient needs a caregiver. In our case, that was going to be my role. You might question, "Why is that such a good thing?" My immediate answer-it gave me back some of what I felt was lost when we heard that dreaded diagnosis. I was gifted back some personal control over the situation. For the first time since my wife had been diagnosed with cancer, some two years prior, I played a clear and defined role in her treatment. I was to be an important part of this experience. No longer was I just a bystander. No longer was I just a conduit to the nurse or doctor, but rather, I was an integral part of the team. That made me personally feel that I had some control over this "thing" that had taken possession of our lives.
Being on this BMT team comes with a lot of responsibility, and it takes time, courage, stamina, and everything else you have needed to tackle other life challenges. As I think back, I never thought I would find anything that could compare remotely to my plebe year at West Point, or negotiating the "deal of the century" as a successful corporate lawyer, but this BMT experience put all of that to shame. It was, and will remain, the challenge of my lifetime.
I moved into the role of caregiver with gusto. I was empowered being able to serve my wife in this manner. Of course, I had the same emotional concerns as many caregivers. I sometimes felt that strange sense of guilt of being in a hospital and being healthy. It is naturally difficult, sometimes beyond words, to watch your loved one feeling so desperately ill. You, as a caregiver, may wonder, as I did, if you are up for this momentous challenge. Believe me, you are.
What I can recommend to you from my own experience is a playbook, of sorts, just like a football player or coach relies on in sports. Knowing what "plays" you can call and ones that you cannot becomes valuable. It helped me immeasurably to have a flexible "game plan" regarding my caregiving role. An organized notebook is a must! It might include a general written outline that captures everything from medical concerns and questions to keeping a journal recording the emotional journey your patient is taking. I kept track of some special needs including financial issues that arose during the BMT.
It is easy for caregivers, as well as the patient, to experience "information overload" given the circumstances of a BMT. There is plenty of information to track. Being organized was made simplest for me with a caregiver's notebook. Included in the notebook were calendar pages that permitted entries. It will become, as it did for me, a valued tool. I could, when my mind was "too crowded" with details or the constant flow of information, always refer back to my notebook for reinforcement. Create your own notebook or purchase one at a bookstore. You can also look online for special caregiver notebooks.
The BMT spousal caregiver experience is, without doubt, the challenge of a lifetime. Being organized, "in control" as much as is possible, and ready to be a team player will serve you well.
Chris Johnson assumed the role of primary caregiver for his wife, Sheryl, when she was told that an autologous stem cell transplant would be the treatment of choice for her breast cancer. (Please note that although stem cell transplant is no longer commonly used for the treatment of breast cancer, the caregiving perspectives in this chapter are nevertheless valuable.) In addition to caring for Sheryl, he also managed parenting responsibilities for their two teenage children. Chris is an attorney and works as General Motors North America Vice President and General Counsel. He is a graduate of West Point and served in the U.S. Army receiving the Army Commendation Medal for Meritorious Service.
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