The role of a cancer caregiver is dependent on the patient’s survival time—a fact I try to keep in mind when offering advice. When I wrote Cancer Journey: A Caregiver’s View from the Passenger Seat, I was new to the job and unfamiliar with the territory. Since 2002, I have become, simply by virtue of my husband’s longevity, somewhat of an expert on caregiving.
Immediately following diagnosis, I was just trying to keep my head above water—without a plan to save myself or rescue Jim. I was frantically treading water trying to keep us afloat and not be sucked down by the undertow. Putting one foot in front of the other, I painstakingly stumbled through the cancer maze.
My job has changed as Jim’s disease has evolved—responsibilities ebbing and flowing with the course of the cancer. Caregivers wear many hats—cheerleader, researcher, patient advocate, dietician, bookkeeper, nurse, psychologist, pharmacologist, spiritual advisor, watchdog, coach, chauffeur, physical therapist, cook, prayer warrior, and pill pusher. Which hat depends on the needs of the patient at a particular time. Tasks change with the condition and status of the patient.
For the most part, caregiving is much less stressful than in the early years of our journey. Jim has been in treatment, chemotherapy or radiotherapy, at least eight times. Each time he was in treatment, I resumed my role as chauffeur and nurse. In the early years I didn’t leave his side during infusions. If it took seven hours, I was there—reading, writing, or sleeping. Lately, depending on the severity of the chemo, I don’t find it necessary to be with him every minute.
Hospitalizations remain exhausting but easier now that I speak Medicalese. Having learned the language, I am better able to communicate with physicians and staff. My role is clearly delineated and I take comfort in the regularity of the hospital schedule. I can sit at the bedside—a hand-holder, prayer warrior, cheerleader, and, when necessary, patient advocate. Someone else prepares meals, administers baths, and dispenses medications.
At home, Jim has assumed some of the duties that fell to me in the beginning. He does his own injections and dispenses his own medication—which may not sound like much but saves me fifteen or twenty minutes a day. He also orders his meds and haggles with insurance companies.
When he is in remission, my job is to keep him there. I research complementary methods, fix nutritious meals, prepare protein smoothies, vegetable juices, and try to reduce stress. I encourage him to engage in activities he enjoys (coaching, FCA, church, ball games) and eliminate stressful activities and events when possible. Weather permitting; I accompany him on a two-mile power walk.
I still go with him to doctor appointments and most scans—but not every one. However, I always am present for scan results. Even the most seasoned patient, should not endure that waiting alone. Yes, I still experience scanxiety but not quite as severe as before. I’ve learned that an “iffy” scan doesn’t mean a recurrence, that a recurrence doesn’t mean certain death, and that a biopsy isn’t always positive. I know that statistics are misleading, and even meaningless, when applied to an individual case.
One thing has remained the same from the day of diagnosis through the second primary cancer and the five cancer recurrences: When you love someone with cancer, the battle is primarily a mental one. I still fight fatigue, worry, and fear, but I am stronger than I believed I was. The human spirit is indomitable.
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