How to Be an Effective Caregiver for a Person With Heart Failure

When Your Loved One Has Heart Failure

Couple sitting at table outside
Thomas Barwick/Getty Images

Finding out that your loved one has heart failure can be a shock to both of you. Heart failure is a serious illness (the term “heart failure” itself certainly sounds scary enough), that has the potential of causing some very unpleasant symptoms and reducing life expectancy. In most cases it becomes a chronic problem that can usually be managed, but it never really goes away.

Heart failure is a diagnosis that has a big impact on the the life of the person who has it—and also on the lives of the loved ones who will be living with and caring for him or her.

How well or how poorly someone does with heart failure depends on several things, including the type of underlying cardiac problem that is producing the heart failure, receiving the best medical care, and the emotional and physical support provided by loved ones at home.

Being the caregiver for a person with heart failure can be a challenge, at least some of the time, but it can also be a personally rewarding experience both for you and the loved one you are caring for. However, the very best results are not reached through unmitigated selflessness; to the contrary, you will be doing your loved one and yourself a great favor if you make sure you are taking care of your own needs, too.

Here is some advice that should help you help your loved one with heart failure.

What to Expect

Everyone with heart failure is different, so expecting a particular kind of experience with your loved one with heart failure may not turn out as you think.

Most people who are newly diagnosed with heart failure—once the condition is stabilized by the doctors, and as long as they are religious in following their medical regimen and optimizing their lifestyles — can usually expect an extended period of time in which they can go about their lives quite comfortably.

Some people with acute heart failure can even recover completely, if the underlying heart disease goes away entirely. (Stress cardiomyopathy is one such condition.)

For some, however, if the underlying heart condition that is producing the heart failure is very advanced, or if it is progressing rapidly despite medical care, a much more difficult clinical course ensues. They may have continuous or frequently recurrent symptoms, and may experience recurrent “episodes” of severe heart failure requiring repeated hospitalizations.

And many people with heart failure have clinical courses that are in between these two extremes, with long periods of feeling quite well interspersed by occasional episodes of worsening symptoms that require some level of medical intervention.

As a caregiver, a reasonable goal would be to do what you can to help your loved one remain stable when the heart failure is under good control, and to recognize the signs that things might be spinning out of control, so that early medical intervention might be called in to get things back on track.

For this reason, it will be a good idea for you to have a basic understanding about heart failure and its treatment.

Understanding Heart Failure

“Heart failure” simply means that some type of underlying heart disease has made the heart unable to keep up with all the body’s needs under all circumstances.

Almost any type of cardiovascular disease can eventually cause heart failure, including (among others) coronary artery disease (CAD)valvular heart diseaseinfectionshypertensionhypertrophic cardiomyopathy, or diastolic dysfunction.

The various underlying causes can produce different types of heart failure. For instance, CAD, aortic regurgitationmitral regurgitation, viral infections, and several other conditions most often produce a dilated cardiomyopathy — a weakening of the heart muscle that makes it unable to contract efficiently. 

On the other hand, aortic stenosis, hypertrophic cardiomyopathy, hypertension, and diastolic dysfunction can cause a thickening (hypertrophy) or “stiffness” of the heart muscle that prevents the main pumping chambers of the heart (the ventricles) from filling completely.

These different types of heart failure are often treated differently. So it is important for doctors to accurately diagnose what is causing the heart failure in order to tailor appropriate therapy.

It is useful for a caregiver to have a basic understanding of the underlying condition that is causing heart failure, and of the treatments being prescribed aimed both at treating the underlying cause and the heart failure itself.

However, whatever the underlying cardiac diagnosis might be, and whether your loved one with heart failure has weak, dilated heart muscle or stiff, thickened muscle, there are two general kinds of problems caused by heart failure that tend to produce symptoms.

First, heart failure can cause the blood returning to the heart to back up, producing lung congestion and swelling of the tissues.

And second, the amount of blood being pumped by the heart can become reduced, causing the kidneys to stop functioning normally. Reduced kidney function can cause the kidneys to retain salt and water, leading to more severe swelling (edema) in the feet, legs and abdomen.

The major symptoms of heart failure are related to this lung congestion, to a reduction in the amount of blood the heart is able to pump, and to the retention of salt and water. These major symptoms are shortness of breath (dyspnea), fatigue, poor exercise tolerance, and edema. The severity of these symptoms can range from very mild to quite severe—and they can change from day to day. Keeping careful track of the severity of symptoms can be helpful in detecting important changes in heart failure. Read more about the symptoms of heart failure.

How You Can Help

There are several important things a caregiver can do to help a loved one with heart failure to avoid acute episodes of worsening heart failure, and to improve their long-term outcome. These include

  • helping the person with heart failure establish and maintain lifestyle changes that will benefit their heart
  • helping them keep up with what is most often a complicated medication schedule
  • helping to monitor the daily measurements and the symptoms that might indicate that the heart failure is worsening
  • recognizing when it is time to call the doctor or go to the hospital

If you are the primary caregiver, you should consider yourself a part of the healthcare team. This means you should go to doctors visits with your loved one whenever possible, listen to all the explanations, and ask questions. As a key member of the team, it is important for you to participate in these critical exchanges of information.

Helping With Lifestyle Changes

Optimizing your lifestyle is very important for almost anyone hoping to avoid cardiac disease. For a person with heart failure, lifestyle issues are even more important. Good lifestyle choices are not “merely” preventive for somebody with heart failure—they constitute actual heart failure therapy.

Especially if you are sharing a living space with a person living with heart failure, the best way to help with the necessary lifestyle changes is to adopt those changes yourself, and incorporate them into the daily routine for everyone in the household. These lifestyle changes should include diet, exercise, and not smoking.

Your loved one will need to discuss an optimal diet with the doctor who is helping them manage their heart failure, but most people with heart failure should be on a low-salt Mediterranean-style diet, with plenty of fruits and vegetables, whole grains, and healthy fats (such as olive oil) instead of saturated fats, while avoiding most packaged, processed foods (especially baked goods). This kind of diet is generally very good for almost anybody.

People with heart failure, however, need to be especially vigilant about salt restriction, since too much salt will worsen their edema and dyspnea. Take the saltshaker away from the table, and cut back on salt during cooking. Again, avoiding processed foods is critical to maintaining a low salt diet.

Smoking is very damaging to the cardiovascular system, and every time someone lights up they are causing acute changes in the lining of their blood vessels. For a person with heart failure, continuing to smoke will likely increase the frequency of heart failure episodes, and will reduce life expectancy. Help your loved one quit smoking, if he or she is a smoker. If you are a smoker yourself, your quitting will be of immense help in helping your loved one to quit.

Keep in mind that people with heart failure will often fatigue more easily than you might expect. Plan your activities with this person accordingly. Allow extra time for the things you need to do, and alternate periods of activity with periods of rest. Try as hard as you can not to express impatience when things go more slowly than you would like.

At the same time, exercise is important for a person with heart failure. So encourage whatever amount of exercise your loved one is capable of performing without excessive fatigue or dyspnea. You and your loved one should ask the doctor whether an exercise rehabilitation program would be helpful in getting them started.

Helping With Medications

People with heart failure usually take a lot of medication, and it is critical to keep track of the pills they are taking. It is usually best for caregivers to let the person with heart failure be the primary manager of their own medication—but it’s often a good idea to double check. Using pill boxes or a chart makes it easier for everyone to know what has been taken and what has been missed.

It is especially helpful for the person with heart failure and the caregiver both to have a good understanding of what all those pills are for, and what steps should be taken if a dose of a particular medication is missed for some reason. Understanding the medication regimen is one of the most important reasons the caregiver should participate in doctor visits whenever possible.

Monitoring Symptoms—When to Call for Help

For people who have heart failure, symptoms tend to wax and wane over time, with some days being better than others. After a time, most caregivers become comfortable recognizing a typical “not-so-good day,” and will simply have their loved one take it a little easier on those bad days.

But sometimes, merely taking it easy for a day or so is not enough. Sometimes it will be important for a person with heart failure to see their doctor, or even go to the emergency room. For the caregiver, knowing when to call for help will sometimes be a no-brainer, but at other times it will be a judgment call. But since it’s your loved one’s heart you’re dealing with, if there’s any question about whether to make the call (to the doctor’s office or 911), then do so.

It is a good idea to monitor your loved one’s symptoms every day, and to log the severity of those symptoms on a chart or a diary. It is useful to track the level of their dyspnea, their degree of fatigue and vigor, and the amount of swelling they have in their legs or ankles. Ask them how they slept each morning. Did they feel short of breath when they laid down for the night? Did they wake up at night feeling short of breath? Observe how breathless they appear as they move around, or as they speak. Recording these things daily will help you to spot trends over time.

Measuring their weight every day (at about the same time, wearing about the same amount of clothing, and with an empty bladder) is useful. Fluid retention will usually show up as a gain in weight (often, over a period of days), before you or your loved one are able to notice any excess edema or dyspnea.

There are two general times when you should seek medical help for your loved one. First, call 911 if they experience significantly worsening dyspnea, chest pain or discomfort, severe lightheadednesssyncope, or any other symptom that appears especially alarming or acute. You should never be hesitant about calling 911 unnecessarily. If you are worried or concerned, call.

Second, call the doctor if you notice a trend over time that seems troubling. This may include a steady weight gain over 2 or 3 days, gradually worsening dyspnea, an increase in leg edema, or just more tiredness or fatigue than you think is typical. These may all be signs that your loved one’s heart failure is gradually worsening, and that an acute episode may be around the corner. If alerted about the change, the doctor will usually be able to turn things around by temporarily adjusting medications.

Taking Care of Yourself

You are not going to be an effective caregiver unless you take care of your own needs. If you become sick, frustrated, or burned out, nobody wins.

Start out by assessing your own support system. What family members and friends are able and willing to pitch in? Identify them, and let them help.

Taking care of somebody with heart failure should not be as work-intensive as taking care of somebody who has had (for instance) a severe stroke, or dementia. So don’t let it become all-consuming. Most people with stable heart failure can fix a simple meal, get the mail, go to the bathroom, or even do light laundry on their own. In general they should be encouraged to do such activities. And they usually do not need 24/7 monitoring. So once your daily assessment shows no alarming symptoms or signs, you can fit in some “me” time.

Take daily breaks, and have somebody spell you for the day once a week or so, if possible. Keep up with your own interests, your hobbies and your social network, as a means of relieving stress. Get enough sleep, get your exercise, and eat a good diet. Maintaining your own health, including your physical and mental well-being, is critical if you are going to be an effective caregiver.

A Word From Verywell

Heart failure is a challenge for everyone—for the person with heart failure, for the doctor, and for the caregiver. The effective caregiver will understand the basics about heart failure, what signs to look out for and what to expect, and when to call for help. Perhaps most importantly, the most effective caregivers are the ones who take care to maintain their own health and wellbeing.

Sources:

Ponikowski P, Voors AA, Anker SD, et al. 2016 ESC Guidelines for the Diagnosis and Treatment of Acute and Chronic Heart Failure: The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure of the European Society of Cardiology (ESC)Developed with the Special Contribution of the Heart Failure Association (HFA) of the ESC. Eur Heart J 2016; 37:2129.

Yancy CW, Jessup M, Bozkurt B, et al. 2013 ACCF/AHA Guideline for the Management of Heart Failure: Executive Summary: a Report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Circulation 2013; 128:1810.

Continue Reading