Caregiving for Older Adults With Heart Disease

Educate and advocate

It’s critical as a caregiver to educate yourself and be ready to ask many questions as an advocate. “Learning how to navigate this disease and the health care system [that supports it] will take time. Remember that you are doing the best you can do. On some days you may feel stoic while on other days, you may feel angry, frustrated, lonely, and burdened.  Know that all caregivers go through these emotions,” Shah says. “Take one day at a time and talk to friends and supporters or other caregivers in your situation."  He reminds caregivers to keep the essentials of life and activities going, and to work to ensure that you are not so absorbed by the activities of caregiving that you put your whole life on hold.

There is no cure for heart disease, although advancements in medical treatment and self-care can prolong life. According to Shah, it’s important to set goals to decrease futile care and suffering at the end of life for those with advanced heart disease. Patients should be encouraged to talk about end-of-life wishes so that the caregiver can work alongside health care providers to meet those needs. No one should shy away from asking the hard questions. While it’s often difficult for patients to think about the time they may have left, these conversations can lead to a better and meaningful outcome for the remaining days.

Robert Christenberry, M.D., 69, is a retired cardiologist from Nashville, Tennessee. Over his 37-year-career, he dealt with caregivers from all walks of life, including some of country music’s most famous stars and their families. One commonality he observed in the caregivers who made a difference in the quality (and sometimes length) of their loved ones’ lives was that they were team players. “They wanted to assist rather than resist the efforts of the professional health care team,” Christenberry says. “These families cared for their charges by being curious and inquisitive about how they could make a difference, rather than spending their efforts trying to direct their own version of optimal care.” 

Mutual respect

“Part of the joy of practicing medicine was to see healthy interaction between a spouse and their caregiver,” Christenberry says. “When there is a level of mutual respect coming from both people, you can feel it in the room. It’s like a magic ointment.” 

In Christenberry’s experience, the best recipe for success is when the caregiver spearheads and cheerleads problem management over three broad categories of care: activity, diet and medications.

Activity is the first place to find a balance, according to Christenberry: “There is a delicate dance, depending on the patient’s condition, between the need to discourage stubborn overactivity and then, during the more advanced stages of the disease, motivating a patient to try to get out of bed.” 

“Encouraging activity and at least forward motion is vital not only to the physical health of the chronically ill, but also to their spiritual well-being,” Christenberry says. “Wheeling a frail cardiac patient to the dinner table in the presence of others, for even a 30-minute visit, can be a balm of care and comfort that pays long-range dividends.”

Diet is the second key factor in managing heart disease. Reading and understanding food labels is a vital tool in this challenge, and very few of us pay attention to them the way we should. “Only about 1 in 10 people can correctly identify sodium as the devil incarnate,” Christenberry says. “The congestive heart failure patient should consume no more than 4,000 milligrams of sodium per day in most situations, and ideally, closer to only 2,000. I’ve seen congestive heart failure patients who spent only a few days eating country ham or a few bowls of canned soup be admitted to the hospital with shortness of breath and sopping wet lungs due to excessive sodium.”

Christenberry notes that the “attentive caregiver who recognizes the signs of sodium overload, an inability to breath comfortably while lying down or weight gain of five pounds or more in a few days, may be able to make a phone call that keeps their charge out of the hospital.”

Medication mishaps

Medications are a modern wonder in the area of heart failure, but they can also be a double-edged sword with the potential to cause harm. “Drug interactions abound and multiply at a frightening rate as each new medication is added,” Christenberry says. “Everybody, including the caregiver, must pay attention for lurking medication mishaps or oversights that can land the person in the hospital or create complications.”

Caregivers need to understand medications and their side effects. There are so many medications associated with heart disease. A good caregiver should have a working knowledge of the patient’s medicine cabinet and share all of that information with the medical team, Shah notes.

Although there is no permanent cure for many forms of heart disease, modern medicine has many tools to help manage it. “Our goal is to make sure that the patient does not suffer. Enlisting the caregiver in this role is an important key to success,” Christenberry says. Today’s cardiologists have many more tools at their disposal with procedures and medicines to help prevent or postpone surgical intervention. According to Christenberry, so much more can be done today in the catheterization laboratory than in previous years. Statin drugs have also changed the outcome for patients with heart disease; and, of course, quitting smoking, watching diet and being active are also good ways to stay healthy. 

Caregiving through anger and fear

A universal caregiver challenge is a stubborn or angry patient, especially in the case of an adult child who is caring for a parent. As the caregiver makes necessary decisions that will restrict daily life, such as taking away the keys to the car or installing a stair trolley, they can often become the enemy. 

“There have been many moments where I’ve told the patient, “You’re alive because of your daughter, so I don’t think it’s a good idea for you to fuss at her!” Christenberry says. “Sometimes that did the trick.”