Are you caring for a loved one with chronic heart failure? Being a family caregiver can feel overwhelming and isolating, but you are not alone. According to the American Heart Association, more than six million American families have an adult member dealing with heart failure. And while living with any chronic disease can be difficult, many people with chronic heart failure learn to manage their symptoms and enjoy full lives, with help from their family and friends.
“One of the biggest challenges people face when caring for a loved one with chronic heart failure is understanding the disease,” said John Osborne, MD, PhD, FACC, FNLA, director of cardiology for State of the Heart Cardiology in Dallas. “Many of us in the medical world tend to use jargon and abbreviations, which can be confusing to patients and their families. But it’s crucial for everyone to know exactly what the disease is, what it means, how to monitor it, and how to manage and treat it.”
Simple Language for a Complex Disease
Dr. Osborne said he and his team act as educators to help patients and their families better understand chronic heart failure. Instead of using technical terms like reduced ejection fraction and preserved ejection fraction, he communicates using simple language and analogies – referring to the heart as a “plumbing” system that needs to pump properly to give the body the blood flow it needs.
“With some patients, I may talk about their heart as being ‘big and baggy,’ which makes it hard to squeeze to pump blood in and out,” he explained. “With other patients I may tell them that their heart squeezes properly, but it’s too ‘stiff’ to sweep blood in and out efficiently — like the difference in pressure between blowing up a balloon and blowing up a hot water bottle.”
According to the American Heart Association, open communication between patients, their families and their care team is important, especially to help with shared decision-making. They advise patients and their loved ones to be prepared for appointments by writing down concerns, asking questions, taking notes and clarifying what the health care team says.
Managing Chronic Heart Failure
About 10 percent of adults living with heart failure have advanced heart failure, in which the condition has progressed to the point where traditional therapies and symptom management no longer work. However, the vast majority of heart failure patients can improve their symptoms with behavioral and lifestyle management strategies.
“Maintaining a healthy weight and monitoring it daily are important as heart failure patients can quickly hold onto fluids, which causes pulmonary edema and difficulty breathing,” Dr. Osborne said. “One of the simplest ways to empower patients and give them something they can control is getting them to focus on the Rule of Twos: Gaining more than two pounds in two days is too much.”
In addition to weight management, the American Heart Association suggests a number of lifestyle changes that can help alleviate heart failure symptoms, slow the disease’s progression and improve everyday life:
- Quitting smoking
- Tracking daily fluid intake
- Avoiding or limiting alcohol and caffeine
- Eating a heart-healthy diet
- Being physically active
- Managing stress
- Monitoring blood pressure and other symptoms
- Getting adequate rest
“Family caregivers play a critical role in helping their loved one adopt and maintain healthy living practices,” Dr. Osborne said. “In some cases, patients may brush off their symptoms or slack off on recommended diet and exercise. It often falls to family caregivers to hold the patient accountable and advocate for them with their health care team.”
Emotional Health for Patients and Caregivers
In addition to helping manage the physical symptoms of heart failure, healthy living can also help patients manage stress and other mental and emotional complications that come with having a chronic disease.
“Chronic heart failure causes severe limitations in daily functioning and may lead to a shortened life span,” explained Barry J. Jacobs, Psy.D., a clinical psychologist, health care consultant and long-time AHA volunteer. “Patients don’t feel well and can’t do much, which leads to a high degree of depression, anxiety and frustration.”
Dr. Jacobs added that if patients allow chronic heart failure to limit their lives, they are more likely to become hopeless and depressed. On the other hand, if they are proactive in managing their symptoms and remain active and engaged, they can attain a higher level of physical functioning and a more positive outlook.
“Caregivers have a direct influence on helping their loved ones maintain a positive attitude,” he said. “That influence is most effective when the caregiver acts as a coach, guiding the patient to make better choices, instead of nagging them.”
Dr. Jacobs cautions family caregivers to not fall into the trap of blaming the patient when they backslide or when inevitable exacerbations occur.
“Heart failure is different from other chronic diseases like cancer because so much of it is behaviorally based,” he explained. “One would never think to blame a cancer patient for winding up in the emergency room due to exacerbated symptoms. But those guilt trips are more common when dealing with a heart failure patient who decides to ‘cheat’ and have a high-sodium meal, for example.”
The blame game and other family conflicts between patient and caregiver can lead patients to feel they’ve lost control over their own lives. They can also lead to stress for the caregiver.
“It’s easy for caregivers to get frustrated when their loved one tries to assert control and does something they shouldn’t – sometimes just for spite,” Dr. Jacobs said. “It’s also easy for caregivers to get worn out, because heart failure is a disease in which demands go on indefinitely, for years, instead of for weeks and months as with other diseases.”
Drs. Jacobs and Osborne recommend that caregivers stay on top of their own physical health and mental well-being so they can provide the best possible support for their loved one. They suggested that caregivers reach out to their primary care physician if they start to feel stressed or depressed. Their doctor can evaluate them, develop a treatment plan, and put them in touch with resources such as therapists, respite services and support groups to help them avoid burnout. The American Heart Association’s Rise Above HF initiative offers caregiver tools and resources as well.
The Rewards of Caregiving
“Caregiving for a heart failure patient can be challenging, frustrating and tiring,” Dr. Jacobs admits. “But it can also be tremendously gratifying, especially when caregivers realize the significant difference they can make in their loved one’s life. There’s a sense of purpose derived from caregiving that can help sustain caregivers over time.”
“The good news is that with proper treatment from a patient’s health care team, good life habits and the support of family caregivers and other loved ones, heart failure patients can dramatically extend their lives and enhance their day-to-day existence,” concluded Dr. Osborne.