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Caregiving for Older Adults With Heart Disease

Overseeing a loved one’s level of activity, diet and medication is key

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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.” 

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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.

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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.”

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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.” 

Tip for Caregivers From Caring for Loved Ones With Heart Disease, by J. Shah, M.D. 

• Familiarize yourself with the physiology of the heart.

• Understand the importance of diet with heart disease and learn how to read food labels. Fruits and vegetables, whole grains and nutritious foods are critical. 

• Cook in large batches and freeze meals so you can grab things easily.

• Watch for signs of depression in yourself — sleeping too much or insomnia, feeling continually tired, irritable and restless, hopelessness, weight loss or weight gain, use of medicine and alcohol.

• Keep loved one’s medical information organized both in folders and electronically on your computer. This should include medical history, ID, legal information and a list of doctors and their contact information. There are numerous apps to help manage this information.  

• Be prepared for emergencies, which are not uncommon with heart disease. Some caregivers keep an emergency bag ready at all times with a copy of the patient’s file.

• Be a curious caregiver and be knowledgeable about the basics of what each medicine is used for, and its potential side effects.  

• If a loved one becomes angry, use the S.T.O.P. mindfulness method, which is S is for Stop, T is for Take a moment to breathe, O is for Observe and P is for Proceed to something else. This little pause is helpful for caregivers too.

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