AARP Eye Center
Like most of us, I rarely think about the fist-sized organ located just left of center in the chest that keeps me alive. A healthy heart pumps five liters of oxygen-rich blood throughout our bodies 70 times in a minute. It’s a workhorse that never gets a rest. But when something goes wrong with our heart, life can radically change for an individual and their family.
More than 30 million Americans suffer from heart disease, making it the leading cause of death in this country. Caregiving for a loved one with heart disease is an important and immense responsibility. As with so many illnesses, it involves caring for the person at home as well as within the medical system at hospitals and clinics. A caregiver needs to understand the heart to make informed and sometimes instant determinations to be able to act meaningfully with the health care team.
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Coronary artery disease, cardiac arrest and congestive heart failure are just a few of the serious issues that can prevent the heart from providing enough oxygen-rich blood to the body, which results in shortness of breath, fluid buildup and damage to other organs. The goal for people suffering heart failure is to try to live in a home setting as long as possible to enjoy everyday normal activities. The natural course of heart disease means people often go through phases of being at home and then cycling back into the hospital setting. In the advanced stages, patients may need more aggressive treatment or hospitalization.
Caregiver’s link to patient and medical team
The role of the caregiver to a person with advanced heart disease requires interacting with two teams, the home care team and the health care team. The home care team usually consists of the caregiver, family, friends, and possibly a health aide and home health nurses. The health care team consists of doctors, nurses, pharmacists, physical and occupational therapists and, potentially, social workers and counselors.
“[The caregiver] is the most important team member for a person with advanced heart disease,” says J. Shah, M.D., author of Caring for Loved Ones With Heart Disease. They form the link between the two teams and ensure a seamless transition between the two environments, as well as the continuous care with the health care system, pharmacy and medications. He notes in his book that the caregiver also can provide physical, intellectual, emotional and spiritual support and be a friend, nurse, assistant and spokesperson by understanding the person’s priorities, likes and dislikes, their health condition and treatment plan, and the other team members’ roles and responsibilities.
“Recognize that heart disease is a chronic condition with ups and downs. There is no ‘same old same old,’ in heart disease,” Shah says. “You have to cope with daily changes, encouraging self-management one day and stepping in to take control on another. Caregivers who go with the flow and embrace the daily variations of heart disease experience less frustration and cope better.”