Normally, people do not live in isolation, and, therefore, they are strongly influenced by the people around them. When a disease affects a given person, those with close relationships to that person will also be affected in some way, either directly or indirectly. For persons suffering from heart failure, family members and friends can play an important role in lending support and helping that person cope with their disease. Friends and family can help their loved one live as well as possible with their disease. This module is for family and friends of people with advanced or severe heart failure—people who require help with day-to-day activities.
Many people with heart failure continue to lead normal, active lives and will not become sicker or disabled. See Module 4 on Self Care for information for people diagnosed with heart failure who continue to enjoy a normal active lifestyle. In general, you can best provide support by learning about heart failure and the patient's treatment plan. Family and friends can be particularly effective in watching for changes in symptoms and in helping a person with heart failure stay on a low-sodium diet and increase his or her physical activity. But because each person is an individual and has differing goals, needs, and abilities, communication about how you can best provide support is important.
In general, you can best provide support by learning about heart failure and the person’s treatment plan. Family and friends can be particularly effective in watching for changes in symptoms; helping a person with heart failure stay on the proper diet that is low in sodium; and encouraging an increase in his or her physical activity. But because each person is an individual and has differing goals, needs, and abilities, communication about how you can best provide support is important. This module will focus on specific things that family members and friends can do to help a person with heart failure. It may be helpful to have the other modules in this series nearby for reference as you read this module.
This module will focus on specific things that family members and friends can do to help a person with heart failure. It may be helpful to have the other modules in this series nearby for reference as you read this module.
This module will provide information on how family and friends can help a person with advanced/severe heart failure:
It will help family and friends learn:
For people suffering with heart failure, it is important to monitor symptoms and to be mindful if they are getting worse. Noticing changes in symptoms early and taking the appropriate steps to manage them may prevent more urgent problems that might require a hospital stay. Sometimes it is hard for people with heart failure to recognize changes in symptoms. At times, a friend or family member may recognize worsening symptoms of which the person with heart failure may not necessarily be aware. In this way, family and friends can be very helpful in monitoring symptoms that might indicate a change in someone’s condition.
Family and friends can help a person with heart failure monitor symptoms by:
Food preparation and eating are social activities that often involve family and friends. It is helpful for all members of the household to understand common diet recommendations for the person with heart failure, even if you are not the one who prepares food for that person. Diet changes are easier when the whole family follows them.
In those with heart failure, eating a lot of sodium will usually lead to fluid retention and worsening symptoms. People with heart failure should therefore eat a low-sodium diet; it is important to understand this diet and how to follow it.
You can help a person with heart failure follow a low-sodium diet by:
Be aware that most foods sold at concession stands are high in sodium. Bring healthy snacks to places such as movie theaters or sporting events where high-sodium foods are usually eaten. Or, eat a healthy meal at home or at a restaurant before going to the event.
When choosing restaurants, avoid places that serve only fried or pre-prepared foods. Most fast-food restaurants fall in this category as well as some family or bistro type restaurants. Because these restaurants typically do not cook the meals from scratch themselves, it is difficult for these establishments to decrease the sodium level in the foods served.
Make it a point to inform the waiter that the food should not be prepared with salt or monosodium glutamate (MSG).
Refer to Module 2: How to Follow a Low-Sodium Diet for additional details on how to follow a low sodium diet and why a low-sodium diet is an essential part of a treatment plan for a person with heart failure.
Keeping active can help a person with heart failure feel better while also decreasing their symptoms to some degree. Remaining active, however, can also be very difficult because this may bring on unpleasant or unwanted symptoms such as excess fatigue or shortness of breath. Choosing the right level of activity can therefore pose a challenge, trying to balance symptoms of heart failure with the need to achieve some activity every day.
You can help a person with heart failure become more active and enjoy it more by:
Refer to Module 5: Exercise and Activity for specific information on starting and maintaining an activity program.
Taking all medicines as directed and checking for weight gain are important parts of a heart failure treatment plan.
You can help with these tasks by:
Research shows that when individuals have confidence in their ability to do something, they are more likely to follow through, even under stressful conditions. You can teach positive behaviors and encourage the person with heart failure in their efforts to manage themselves better.
Examples include helping the person learn to read food labels to pick out low-sodium foods, stressing the importance of taking medicines as prescribed by the doctor or the nurse, and helping the person recognize early symptoms of worsening heart failure.
Refer to Module 4: Self-Care: Following Your Treatment Plan and Dealing with Your Symptoms for additional information about the importance of self-care.
Some people with heart failure are motivated to practice self-care without much support. Others enjoy or need the help and support of family and friends to manage daily activities. Honest communication about goals, needs, and desires is important. The patient's doctor or nurse can also assist in making connections with people and groups who are available to help. Do not hesitate to use them to provide a link to others.
You can help a person with heart failure remain independent but safe by discussing topics such as driving and living arrangements and providing assistance as necessary.
Driving with Heart Failure
There are no set rules for heart failure and driving a car. Factors to consider are whether the person with heart failure has physical or mental changes that impair his or her ability to drive. Such changes include excessive fatigue, decreased alertness, confusion, memory lapses, or other signs of slowed mental processes. If you are concerned, discuss it with the patient's doctor or nurse.
Living Arrangements
There are no set rules on the best living arrangements for a person with heart failure. Each situation is different. A person with heart failure may want to stay in a house or neighborhood that is familiar. Sometimes this may not be as practical, and another type of living arrangement may be more appropriate or safe. In this instance, it is important to discuss the pluses and minuses of moving. Writing down the advantages and disadvantages of the person with heart failure moving or staying in his or her current residence can help with the decision-making process.
Support from family or friends can play a critical role in deciding where the person suffering from heart failure might live. For example, if you or others can offer help with chores such as taking out the garbage, mowing the lawn, grocery shopping, doing the laundry, and cleaning, that person just might be able to remain in their home for the time being.
Remember, even if you think you have an ideal solution such as having the person with heart failure move in with you or other people, the change may mean a loss of independence. The move may be easier if the person with heart failure recognizes the need for help and support.
Emotional and Social Support for Persons with Heart Failure
People with heart failure who have emotional support from family and friends often feel better and have a more positive outlook on life. Many people with heart failure also find that getting involved socially helps them keep their mind off their symptoms and improves their quality of life. You can offer emotional support to a person with heart failure by:
Discussing Feelings and Fears
If you think the person with heart failure is depressed or anxious, discuss it with him or her. There is much that can be done to manage that type of feeling, but the first step is recognizing it. In this circumstance, you could help by considering the following:
You can also offer emotional support by:
Financial Matters
Sometimes a person with heart failure may have trouble following his or her treatment plan because of financial barriers. If this is the case, you can help by asking healthcare providers about financial assistance programs for:
Talking with the Doctor or Nurse
Talking with the doctor or nurse will help ensure that the person with heart failure gets the best possible care. If the person with heart failure is not comfortable asking questions, you can help.
It is always a good idea to ask the questions in the presence of the person with heart failure. That way, everyone hears the same information, and there will be less chance for misunderstanding. It also helps maintain the person’s trust in the healthcare team.
Advanced care planning refers to a given person outlining his or her wishes for medical treatments in the event of a severe or catastrophic illness before it happens. For people with chronic heart failure it is important to discuss topics associated with advance care planning such as a living will. A living will is a legal document that outlines a person’s specific wishes in the case where they become mentally impaired or unable to voice their wishes in the event of a severe illness. While it is difficult to discuss death and dying, everyone benefits by knowing the wishes of a person to whom they are close. People with heart failure and their families should discuss among themselves what to do in the event of an emergency, especially one involving a heart attack that may cause death. Knowing a person’s wishes up front can be helpful with decision- making on the part of that person’s family if something like this should ever occur.
Sometimes family members and friends may think it is better to remain quiet about advance care planning. This is because they do not want to make the person with heart failure upset, or because they feel the person has been through enough already. In fact, many people with heart failure are relieved that someone is willing to talk to them about their wishes related to death and dying. Knowing that everyone involved in making advance care planning decisions understands the person’s preferences can lessen the burden when decisions have to be made.
Communicating about advance care planning in a loving and caring way can help make these discussions easier. One way to begin talking about the topic is to tell the person what you see or feel. For example, you can start by asking:
Family and friends who assume responsibility for caring for someone with advanced heart failure can run the risk of feeling overly burdened by the demands of such care. This is also known as “burn out.” Your own quality of life or health can suffer as a result. For this reason, it is important for you to take care of yourself too. You can do so by: