Topic Overview

Talk with doctors, therapists, and counselors about how to help a friend or relative living with heart failure.

Most people don’t hesitate when they are called upon to help a loved one who is ill. But being a full-time caregiver may be an unfamiliar role for you. It is important to consider the long-term implications of this commitment, because so many people with heart failure will progress to an end stage of their disease and will need assistance to survive.

Helping with daily activities

The person you are caring for may have considerable physical limitations and must rely on others for help with relatively simple but important tasks. You and your family may choose to assume a large role in managing day-to-day tasks. Some of the ways in which you can help are listed below.

• Shopping for and preparing food.Many people with severe heart failure cannot leave the house on their own to shop for food. You can help shop for heart-healthy, low-sodium foods. Also, you may be involved with preparing these types of meals.
• Cleaning. Simple cleaning tasks can be too physically demanding for someone with heart failure. You may want to help clean your loved one’s house regularly or hire a maid service.
• Driving. A person with heart failure may no longer be able to drive because of irregular heart rhythms, fainting spells, or other complications of heart failure. But he or she will need to go to frequent doctor appointments and will need someone else to drive to these appointments and to other destinations too.
• Drugs. Most people with heart failure require multiple medicines to control their symptoms. Many of these drugs must be taken several times each day. Make sure that the person can afford to pay for the medicines. Help your loved one by organizing the drugs, perhaps using a pillbox with one compartment for each day of the week or marking a calendar to help keep track of when to take medicines.
• Monitoring symptoms. If your loved one cannot keep track of his or her own weight, you may need to help. Even small changes in weight can signal a dangerous buildup of fluid. You should encourage your loved one to weigh himself or herself at the same time every day and to call the doctor if there is a sudden increase in weight. Call the doctor if other symptoms of heart failure get worse.
• Stairs. If your loved one has trouble getting around because of heart failure, you may need to consider rearranging his or her house to make daily tasks easier to do. People with severe heart failure should not have to climb stairs on a routine basis. If possible, move your loved one’s bedroom to the main floor of the house. If the bathroom and bedroom are on different floors, a bedside commode may be very helpful.
• Temperature. Symptoms of heart failure often get worse during hot, humid days. Use an air conditioner during the summer.

Giving emotional support

You can help provide the emotional support that your loved one needs by:

• Offering encouragement.Adopting the lifestyle changes that doctors recommend for heart disease can be difficult for your loved one. Encourage him or her to start slowly and gradually build up to an overall goal.
• Offering help and also encouraging your loved one to remain active. Even though your loved one may have physical limitations, he or she should still try to stay as active as possible. Moderate exercise and doing simple tasks around the house can be safe. This can help your loved one feel better both physically and mentally. If you are concerned about what activities are safe, talk with the doctor.
• Asking if you can participate in doctor visits. You can offer support by sitting in on doctor visits and taking notes. This can help your loved one remember important instructions. He or she may also feel less alone during recovery.

Living through the last weeks or months of progressive heart failure can be a very difficult process, requiring all the support a family can muster.

Looking after yourself

Being a caregiver can be mentally and physically challenging. There are steps you can take to help make the situation more manageable for yourself. Remember that you will be an effective and loving caregiver only if you are in good physical and mental shape.

• Enlist help when you need it. If possible, don’t take on all the responsibilities yourself. You may be able to involve other family members or a visiting nurse. Or you may be able to hire a food delivery or housekeeping service to help with the shopping and cleaning. There may be services available within your community to help. Check with local government agencies, service clubs, and churches.
• Take time for yourself. Being a caregiver can be stressful and time-consuming. To avoid “burnout” and to continue to provide care and support, it is important to save some time for activities that you enjoy.
• Seek emotional support if you need it. Being a caregiver to a loved one whose health is deteriorating can be emotionally difficult. If you are having trouble coping with your feelings, seek advice and counseling from family members, trained mental health professionals, or spiritual advisors.

Seeking outside help

Some families need outside help to care for a loved one with heart failure. If all of your family members work, it may not be possible to care for your loved one at home. Some people with heart failure require more care than their family can reasonably be expected to provide. In these cases, you may consider placing your loved one in a long-term care facility.

The available long-term care options depend on your loved one’s level of independence and need for supervision. Some people with heart failure are relatively independent and able to perform basic activities on their own, but they need assistance in preparing meals and sorting their medicines. These people may be well cared for in a supervised living facility that provides food and staff but not routine nursing care. Other people may have difficulty performing basic activities and may get better care in a nursing home where the staff can assist them with eating and bathing. In a nursing home, nurses can track your loved one’s symptoms and make sure that they take their drugs appropriately.

It is important for people who are in long-term care facilities to feel that they are still a part of their family. Frequent visits by family members or day trips to the family home go a long way in improving these people’s emotional health.

Considering the end of life

It is important for families to be willing to discuss end-of-life issues with both their loved one and his or her doctor. A clear decision needs to be made regarding what to do if your severely sick loved one becomes even sicker. You and your loved one should decide whether life-support measures should be used if your loved one’s condition becomes more severe. Discuss these issues with your doctor.

Some people feel very strongly that every possible medical treatment should be used to prolong their lives. Others feel that if there is no reasonable chance of their health improving, then the only measures that should be taken are those that make them as comfortable as possible. This is a very personal, and can be a very difficult, decision.

It is much easier to make this decision when your loved one feels relatively healthy and is able to openly express his or her wishes to a family member or friend. Even if it is uncomfortable, try to give your loved one support during this tough time.

Helping you pay for health care

Fortunately, both large and small foundations exist to help people pay for medical care that they could otherwise not afford. Many of the foundations offer grants to pay for other services beyond health care. Many hospitals in the United States are not-for-profit institutions whose mission is to provide high-quality health care to the communities they serve. In many instances, this goal includes delivering medical services to people who cannot pay for care.

There is also assistance for people who cannot afford the medicines prescribed for their disease. In the case of medicines, drug manufacturers who have developed patient assistance programs (PAPs) distribute free or discounted medicines to people who otherwise could not afford them.