Understanding Heart Failure and What to Expect: A Guide for Families

Published on November 6, 2023

Updated on November 18, 2023

Dealing with a loved one's heart failure can be overwhelming, but with the right knowledge and support, you can provide the best care possible. This aims to help families understand what heart failure is, what changes to expect in their loved one's condition, and how to provide compassionate care throughout the journey, from onset to end-of-life.

What is Heart Failure?

Heart failure occurs when the heart's ability to pump blood efficiently diminishes, leading to reduced oxygen and nutrient supply to the body's organs and tissues. It's important to know that heart failure is a chronic condition, meaning it doesn't go away, but its symptoms and severity can be managed.

Common Symptoms of Heart Failure

  • : Your loved one may have trouble breathing, especially during physical activity or while lying down.
  • Fatigue and weakness: They might feel tired and weak due to the heart's reduced ability to pump blood effectively.
  • Swelling: Heart failure can cause fluid retention, leading to swelling in the legs, ankles, and abdomen.
  • Persistent cough: A chronic cough, sometimes with pink or white mucus, may occur due to fluid buildup in the lungs.
  • Rapid or irregular heartbeat: Your loved one might notice palpitations or irregular heartbeats.

Changes in the Loved One’s Condition

Heart failure is a progressive condition, meaning it can worsen over time. It is important to be aware of these changes:

  1. Stages of Heart Failure:
    • Class I (Mild): In this stage, your loved one may not experience any symptoms during regular physical activity.
    • Class II (Mild to Moderate): Symptoms may occur with ordinary physical activity.
    • Class III (Moderate to Severe): Your loved one may experience symptoms with less physical activity.
    • Class IV (Severe): Symptoms can occur even at rest, and any physical activity may worsen them. This class is the terminal stage for which hospice should strongly be considered.
  2. Exacerbations or “Flare-ups”: Heart failure exacerbations are periods when symptoms suddenly worsen. These might lead to hospital admissions, but proper care can help prevent some of these situations.
  3. Medication Adjustments: Over time, healthcare providers may adjust medications to manage symptoms and improve quality of life.

Caring for Your Loved One with Heart Failure

As a family caregiver, your role is essential in providing comfort and support. Here are some caregiving tips:

Encourage a Heart-Healthy Diet

Eating healthy can help the heart work better and prevent more problems. A heart-healthy diet is low in salt and fluids. Salt can make the body hold more water, which can make the heart work harder and cause swelling. Fluids can also build up in the lungs and make it hard to breathe. You can help your loved one eat healthy by:

  • Choosing fresh or frozen fruits and vegetables, lean meats, fish, poultry, low-fat dairy, and whole grains.
  • Avoiding processed foods, canned foods, fast foods, and salty snacks that have a lot of salt added.
  • Reading food labels and choosing foods that have less than 140 milligrams of sodium per serving.
  • Using herbs, spices, lemon juice, vinegar, or salt-free seasonings instead of salt to add flavor to foods.
  • Measuring and limiting the amount of fluids your loved one drinks each day. Fluids include water, juice, milk, coffee, tea, soda, and soup. Ask the healthcare provider how much fluid your loved one can have each day.
  • Weighing your loved one every day and reporting any sudden weight gain or loss to the healthcare provider. Weight changes can be a sign of fluid buildup or dehydration.

Assist with Medication Management

Medications can help the heart work better and relieve symptoms. But they can also have side effects or interact with other drugs. You can help your loved one take medications safely by:

  • Making a list of all the medications your loved one takes, including the name, dose, time, and reason for each one. Keep the list updated and bring it to every healthcare visit.
  • Using a pillbox, a calendar, an alarm, or a phone app to remind your loved one when to take each medication.
  • Checking the expiration dates and throwing away any expired or unused medications.
  • Storing the medications in a cool, dry, and safe place, away from children and pets.
  • Watching for any changes or side effects from the medications, such as dizziness, nausea, rash, or bleeding. Call the healthcare provider if you notice any problems or have any questions.

Monitor Fluid Intake and Output

Keeping track of how much fluid your loved one drinks and passes can help prevent fluid buildup and kidney problems. You can help your loved one monitor fluid intake and output by:

  • Measuring and recording the amount of fluid your loved one drinks each day. Include all types of fluids, such as water, juice, milk, coffee, tea, soda, and soup. Compare the amount with the limit set by the healthcare provider.
  • Measuring and recording the amount of urine your loved one passes each day. You can use a container, a measuring cup, or a urinal to collect and measure the urine. If your loved one wears diapers or pads, you can weigh them before and after use and subtract the difference.
  • Noticing and reporting any changes in the color, smell, or amount of urine. Dark, cloudy, or foul-smelling urine can be a sign of infection or dehydration. Less or more urine than usual can be a sign of kidney problems or fluid overload.
  • Checking and reporting any signs of swelling, especially in the legs, feet, ankles, or abdomen. Swelling can be a sign of fluid buildup or heart failure worsening.

Encourage Physical Activity

Being active can help the heart and the body stay healthy and strong. It can also improve the mood and the quality of life. You can help your loved one be active by:

  • Asking the healthcare provider what kind of activities and how much exercise your loved one can do safely. Some examples are walking, stretching, gardening, or doing household chores.
  • Helping your loved one choose activities that they enjoy and can do comfortably. Start slowly and gradually increase the time and intensity. Stop and rest if your loved one feels tired, dizzy, or short of breath.
  • Encouraging your loved one to do some activity every day, even if it is just a few minutes. Avoid sitting or lying down for too long. Move around every hour or so to keep the blood flowing and prevent blood clots.
  • Joining your loved one in some activities to make it more fun and supportive. You can also invite other family members or friends to join in.

Support Emotional Well-Being

Heart failure can be stressful and scary. It can affect the emotions and the mental health of your loved one and yourself. You can help your loved one cope with heart failure by:

  • Listening to your loved one's feelings and concerns. Let them know that you care and that you are there for them. Try to be patient and understanding, even if your loved one is angry, sad, or frustrated.
  • Providing a safe and comfortable environment for your loved one. Make sure they have enough rest, sleep, and privacy. Keep the room at a comfortable temperature and noise level. Use pillows, blankets, or fans to make your loved one more comfortable.
  • Helping your loved one stay connected with family and friends. Encourage them to talk to their loved ones on the phone, online, or in person. Invite them to join in social activities or hobbies that they like, if possible.
  • Seeking professional help if your loved one shows signs of depression, , or other mental health issues. Some signs are losing interest in things, feeling hopeless, having trouble sleeping, eating, or concentrating, or having thoughts of harming themselves or others. Call the healthcare provider or a mental health counselor if you notice any of these signs.

Plan for End-of-Life Care

End-of-life care is the care that people receive when they are near the end of their lives. It can include medical treatments, pain relief, emotional support, and spiritual care. It can also involve making decisions about what kind of care your loved one wants and does not want at the end of life. You can help your loved one plan for end-of-life care by:

  • Talking to your loved one about their wishes and preferences for their care at the end of life. Ask them what is important to them, what they are afraid of, and what they hope for. Respect their choices and values, even if they are different from yours.
  • Helping your loved one make an advance directive. An advance directive is a legal document that states what kind of medical treatments your loved one wants and does not want at the end of life. It can also name a person who can make decisions for your loved one if they cannot speak for themselves. This person is called a health care proxy or a durable power of attorney for health care.
  • Discussing the options for hospice and with your loved one and the healthcare provider. Hospice and are types of care that focus on relieving pain and symptoms and improving the quality of life for people with serious illnesses. They can also provide support and counseling for the family and caregivers. Hospice and palliative care can be given at home, in a hospital, or in a facility.
  • Seeking support for yourself and your family. Caring for someone with end-stage heart failure can be hard and exhausting. You may feel sad, angry, guilty, or overwhelmed. You may also have physical, financial, or social problems. It is important to take care of yourself and get help when you need it. You can:
    • Join a support group for family members and caregivers of people with heart failure. You can share your experiences, feelings, and tips with other people who understand what you are going through. You can also learn more about heart failure and how to cope with it.
    • Ask for help from other family members, friends, or volunteers. They can help you with some tasks, such as shopping, cooking, cleaning, or driving. They can also give you some time off to rest, relax, or do something you enjoy.
    • Talk to a counselor, a therapist, a clergy member, or someone you trust. They can help you deal with your emotions and stress. They can also help you find resources and services that can help you and your loved one.
    • Take care of your physical health. Eat well, drink enough water, exercise regularly, and get enough sleep. Avoid smoking, drinking alcohol, or using drugs. See your doctor for regular check-ups and screenings. Tell your doctor if you have any health problems or concerns.

Caring for someone with end-stage heart failure can be challenging, but also rewarding. You can make a difference in your loved one's life by providing them with the best care and support possible. Remember that you are not alone. There are many people and organizations that can help you and your loved one along the way.

Conclusion

Caring for a loved one with heart failure requires patience, understanding, and empathy. By being informed about the condition and its progression, you can provide the best possible care and support throughout their journey.

Resources

America Heart Association on Heart Failure

Mayo Clinic on Heart Failure

Cleveland Clinic on Heart Failure

What Is Heart Failure?

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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