My husband was my caregiver when I was diagnosed with advanced stage breast cancer in 2004. Joe quickly learned his artful role. Caregiving has one of the most difficult dance maneuvers -- learning when to lead and when to follow. There were times when I discussed my disease nonstop and other times when my lips were tighter than a clam's shell.
Joe accompanied me to nearly all of the innumerable appointments, listened intently to each new recommendation and on occasion took over the discussion when my cluttered brain could not absorb any more chatter; as if my brain was underwater. We trekked from one doc to another, one test to another, still attempting to keep our normal lives, continually working and maintaining our "Before Cancer" life.
Joe never complained about his caregiving duties while he changed my drains, washed my hair and handled the overabundance of calls, at the same, tending to his work responsibilities in addition to caring for his aging parents.
A recent report, "Caregiving in the United States," estimates that approximately 34.2 million Americans provided unpaid care to an adult age 50 or older, in the previous 12-month period. Eighty-five percent of those caregivers are caring for a spouse or parent. Caregiving, while rewarding, can be overwhelming especially when the emotional connection to a spouse or parent is difficult to extricate from their day-to-day personal care needs. It can take an enormous toll on the caregiver's other family obligations, job responsibilities, personal health and finances, adding many more balls to life's normal juggling routine.
Recently my role as caregiver accelerated as my 88-year-old mom fell, fracturing two neck bones, losing the movement of her non dominant left arm. While falling was extremely rare for my mom, who has lived alone since my dad passed away 47 years ago, it quickly became her No. 1 safety priority. According to the Center for Disease Control (CDC), falls are the leading cause of fatal injury and the most common cause of nonfatal trauma-related hospital admissions among older adults. Every 13 seconds, an older adult is treated in the emergency room for a fall; every 20 minutes, an older adult dies from a fall.
Nine months prior to my mom's fall, while mindlessly clicking the TV remote, I stumbled on Book Notes, a CSPAN program. Dr. Atul Gawande, a Boston surgeon, was discussing his new book, Being Mortal. I was mesmerized by the conversation as he retold story after story of aging and its challenges, connecting them to my personal experience as I watched my husband's mom and dad confront decisions about what matters in the end. Within one week, the book was filled with dog ears, asterisks, and underlining. Little did I know at the time that "Being Mortal" would become my guide in helping me react to my mom's fall and subsequent decisions. Ensuring her goals and desires for what matters to her became my priority.
Within weeks, after several doctor visits and numerous imaging tests, my sharp as a tack, independent mom was donning a neck brace as she prepared for surgery. I relentlessly focused on ensuring that my mom did not lose the ability to choose her course of action after deliberating all options. The neurosurgeon discussed options and based on the extent of her injury, he recommended surgery. I was optimistic that my 114-pound, 88-year-old mom would not require surgery as my husband's uncle recently fractured his vertebrae, as well as former President George H.W. Bush and each required no surgery. As my mom listened intently to his analysis of both options, she made the decision to have the surgery while commenting, "I still want to dance."
My mom tolerated the surgery well and was discharged to rehab for a short stay. By day three, in spite of loving every health care provider and therapist, she became teary-eyed when she realized that she was not going home the following day, "They said it would be a short stay, I want to go home," she exclaimed. We continued to discuss her goals for release -- safety and independence. My three siblings and I planned with her therapists the transition to home, eliminating throw rugs, rearranging her cabinets for easy accessibility, purchasing a life alert button and equipment to enable her independence. She was discharged from rehab on the 10th day with her new best friend for now -- a walker. She was beaming with joy as she was wheeled out of rehab heading home to her castle.
Transitioning from 24-hour care to living alone is our next challenge. My siblings and I are exhausted yet thankful that we have each other to depend upon; securing community health services for therapy, nursing and home care services. We are taking turns staying overnight with mom as she regains her independence and confidence as she navigates her current new normal. We are juggling our careers, families and day to day responsibilities to collectively give our mom her desire to enable her well being. Right now her desire is to live independently in her home of nearly 60 years. Like Dorothy in the Wizard of Oz, my mom concurs, "There is No Place Like Home."