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Tuesday, July 5, 2016

In Sickness And In Health: The Critical Role Of The Caregiver

A partner's promise and actions 'in sickness & in health' and 'for better or worse' are tested in the dark, challenging days when sickness can trump 'happily ever after.' I am grateful to my devoted husband and continued caregiver, Joe, whose actions to eliminate grief by preventing late-stage breast cancer catapulted the education & advocacy efforts of Are You Dense, Inc & Are You Dense Advocacy, Inc. to the global stage.



A 2015 report on the family as caregiver reports some startling statistics. An estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months. Caregiving can be all consuming, as often an unexpected accident or illness propels the family to this not sought after vulnerable position of caring for a family member. Being a caregiver to my mom as chronicled in my blog the Juggling Act of a Caregiver, I can relate to the emotional and physical strain reported by the population of higher hour caregivers. Like most caregivers, my husband of 30 years stumbled into the caregiving position upon my shocking stage 3C breast cancer diagnosis in 2004, within weeks of my 11th normal mammography report.



From the moment I relayed the tragic news of my advanced-stage diagnosis, without an instructional manual, Joe intuitively took charge of his caregiver responsibilities. Joe was fortunate to learn, in his early years, the attributes of a care-giver, as he watched his mother, Mary, who earned her nursing degree in 1941, selfishly care for her family.



Joe never complained about his caregiving duties as he changed my drains, washed my hair, accompanied me to nearly all of my innumerable appointments, at the same time, tending to his work responsibilities in addition to caring for his aging parents. Studies have shown that caregivers experience a complex powerful emotion that may be equal or surpass those experienced by the patient during diagnosis and treatment. Also reported is the lack of special attention to caregivers as a serious gap in health care.



Several weeks into my diagnosis, when my brain could not absorb any more breast cancer chatter, Joe intervened by responding to the innumerable calls as I took a breast moratorium. He willingly accepted this responsibility and, as such, can recite my chemotherapy regimens, discuss my current treatment and screening regimens and recite the scientific facts about the impact of dense breast tissue on a woman's breast health.



As we proceeded together in 'treatment,' Joe was as outraged as I was when we uncovered a lineage of scientific research prior to my advanced stage breast cancer diagnosis, about the impact of dense breast tissue on missed, delayed and advanced stage breast cancer. It was his suggestion, after my health care providers refused to disclose the patient's dense breast tissue with her mammography reporting results, to contact a former high school classmate, now a senator in the Connecticut Legislature, to seek breast cancer screening justice through legislative efforts. Since that initial phone call in 2004, our grassroots advocacy has resulted in 28 density reporting laws across the country, beginning in Connecticut in 2009.



Joe, an accomplished drummer and musician, is the architect of the Are You Dense MusicFEST which began in September, 2009, as a benefit to our non-profit charity. He recently produced our 8th Annual MusicFEST this past June. As I was standing back-stage at the Palace Theater venue, waiting on deck to be introduced by my caregiver husband, my eyes welled up with tears as I flashed back to the innumerable dark days, when navigating cancer land was as foreign as living on another planet might be.



Joe's unwavering devotion to my health care and our breast health mission, culminating with my breast cancer diagnosis, has altered our lives and changed our 'Before-Cancer' plans, putting off rescuing a dog, taking golf lessons together and dreaming of learning Italian as we spend our sunset years traveling where his grandparents and my grandmother grew up. I count my blessings that my husband's vow, in sickness and in health, has withstood the caregiver challenge he promised to me nearly forty-two years ago.



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