A Special Challenge and a 24/7 Responsibility: Caring for a Family Member with a Mechanical Heart at Home
By Jesus (Jessie) Casida, PhD, RN, CCRN-CSC, APN-C, a Robert Wood Johnson Foundation Nurse Faculty Scholar
Mechanical hearts such as left-ventricular assist devices (LVADs, see websites below) have evolved from a life-saving technology to a viable option for sustaining life and improving the quality of life for patients with end-stage heart failure. Whether the LVAD is implanted as a bridge or an alternative to heart transplant, a family caregiver has to assist the patient in implementing the complex home care regimen.
My experience with LVAD caregivers began in 1990, which I had a first-hand experience with the evolution of the technology and first witnessed the day-to-day challenges faced by caregivers. A reliable and competent caregiver who will be responsible for helping the patient to carry out the home care regimen is the first step in the planning process LVAD implant.
As an advanced practice nurse, I was responsible for training and evaluating the caregivers’ readiness, and long-term follow-up. Discharge preparations for caregivers are complex and include completion of “LVAD Care” training and competency validation through written tests and skill demonstrations. Moreover, the patient’s home is fitted with the appropriate electrical outlets and voltages, and the local hospital and emergency services are notified prior to discharge.
By Linda Wright Moore
RWJF Senior Communications Officer
Help wanted: Must be available and on call 24/7, year round. No vacations, no days off, no benefits or retirement plan. Base salary: zip. Likely to require taking time off from paid work (without pay) under the Family and Medical Leave Act. Qualified candidates should expect to use own funds, including savings, for expenses. Preferred applicants should have extensive experience in scheduling and arranging transportation to multiple appointments; administration of medications and treatments; and management of complex, chronic and acute conditions. Most importantly, they must be skilled at coordination of care, with capacity to connect with overburdened primary care providers who are too busy to talk, and a bloodhound’s nose for tracking down elusive specialists for consultation, on the rare days they are not in surgery at dawn, out to lunch or gone for the day at 3:45pm. Must agree to forgo taking care of one’s own health (no time for that!) Total commitment is required and will be rewarded with the satisfaction of doing the right thing for someone close to you – even as personal hopes, hobbies and aspirations are stashed in a lock box for which there is no key. WARNING: Rarely do individuals actively seek this position; like life itself, it generally just happens to people. And once it does, beware: you’re not allowed to quit.
If this sounds like your life – then you’re a family caregiver, and now is your time. Mine too. I’m the primary caregiver for my husband, who has been disabled for over a year now.
Here’s some good news: November is not just for turkey, dressing, Pilgrims and pumpkin pie. Along with Thanksgiving, November is National Family Caregivers Month, a time for recognizing and giving thanks for – and to – the 43.5 million family caregivers over age 18 in America, whose unpaid services to support the health needs of family members aged 50 or older were valued at $375 billion in 2007.
More than 65 million people in this country provide care for a chronically ill, disabled or older family member or friend, according to the National Family Caregivers Association (NFCA). Caregivers play an important role in the health care system, serving as patient advocates and aiding medical professionals in providing high-quality care outside of the hospital.
AARP’s Public Policy Institute, The Commonwealth Fund and The SCAN Foundation last month released a report showing each state’s performance in the delivery of long-term services and supports to older adults and people with disabilities. It includes a scorecard that looks at how each state supports family caregivers and patients. While it finds “substantial” variation from state to state, those with the highest levels of performance “have enacted public policies designed to… address the needs of family caregivers by offering legal protections as well as the support and services that can help prevent burnout.”
Those kinds of supports can make a huge difference for family caregivers, experts say, because many struggle to balance their own care with that of their loved one. Nearly one in four caregivers cut back on spending for their own health or dental care to help with the expenses associated with caring for a relative or friend. Caregivers report using their savings or cutting back on basic home maintenance to pay for a loved one’s care. In fact, in 2007, family members caring for someone age 50 or older reported spending an average of $5,531 out of their own pockets.
It’s not surprising, then, that a survey released last week by NFCA finds family caregivers are concerned with taking care of their personal health, lack of respite care, and meeting financial needs.
“Many family caregivers take on a significant and sustained burden of care," NFCA President and CEO Suzanne Mintz said in a statement. "This survey confirms that. More than one-half of the respondents have been in their caregiving role for five years or longer, one-third care for more than one person, and they assist with more daily activities than a typical family caregiver."
In recognition of their dedication and efforts, the month of November has been designated as “National Family Caregivers Month.” Throughout the month, the Robert Wood Johnson Foundation Human Capital blog will feature posts by RWJF scholars who are conducting research relevant to caregivers, and by RWJF staff and other experts with important stories and perspectives. We invite you to join the conversation. Register below to leave a comment on this or other posts.