Death and chronic illness are difficult subjects to broach; however, they are an unfortunate reality. According to the National Family Caregivers Association (NFCA), in 2009, 65 million Americans provided an average of 20 hours per week of in-home care for those afflicted with illness, disabilities and the general frailties associated with aging. A study by AARP, The Toll on Family Caregivers, estimated the financial burden to be $450 billion per year. Whether the in-home provider is a family member or a professional caregiver, the role requires an emotional investment that far outweighs the taxes of time or money. “It’s an incredibly emotional job,” says Mike Gianino of Homewatch CareGivers. “One that requires them to be ‘on their game,’ emotionally,” he adds. The extent of care is dependent on the needs of the patient. Hospice providers such as St. Luke’s provide an interdisciplinary approach to care with the provision of a nurse, nurse’s aid, social worker and religious counsel. “We provide a unit of care for the entire family,” says Lisa Heisserer, administrator for St. Luke’s Home Healthcare and Hospice.
But what happens after the death of the patient? First, it is important to understand the challenges caregivers face, which vary depending on the individual and their relationship with the patient. “Often family members have a real loss of purpose, they have defined themselves by their role as a caregiver,” says St. Anthony’s Medical Center bereavement supporter and educator, Lisa Wagner-Daegling. Most professional caregivers view their day-to-day interaction as more than just a job, says Gainino. Instead, he refers to their loss as “a huge withdrawal from their emotional bank account.” The question then arises, how can caregivers successfully transition back to living?
Wagner-Daegling stresses the importance of seeking out and accepting support from others. “Find someone to coach you through the process; don’t try to do it alone,” she says. Most hospital hospice centers host support groups and offer bereavement programs. Gianino urges his care providers to remember they are in the business to make a difference and a loss does not negate their efforts. He urges them to focus on the positives rather than the void and envelop themselves in the camaraderie of others in their field. St. Luke’s has an annual memorial service the week before Memorial Day. “The service allows our staff to celebrate the life of their patients and reconnect with the family, providing a sense of closure for everyone,” Heisserer explains. She advises caregivers to take care of themselves and remember that the course of grieving will encompass both good and bad days. The NFCA, founded in 1993 by two women who sought support from one another, provides a wealth of information and support for caregivers on its website: nfcacares.org.
It is important to recognize extreme shifts in someone’s basic personality as it may be an indication they are avoiding or ignoring the grieving process. Wagner-Daegling emphasizes that although one may never return to life as they knew it prior to the loss, “it is important to find a new normal.”