Family and Friends Guide to Living Well and Living Strong with Heart Failure
Living with heart failure can be a difficult challenge. People who have heart failure need to follow a daily medicine and dietary program to limit heart failure symptoms, such as pain, weight gain, shortness of breath, and lack of energy.
Family members and friends play an important role in helping a person with heart failure. Your support with day-to-day activities helps the person maintain a good quality of life. Caring for a loved one can be challenging, but it can also provide rewards and satisfaction. Balancing your loved one’s needs, your own needs and concerns, and your household duties can take a toll.
We encourage you to use this guide to help you and your loved one live well and live strong with heart failure. This guide will provide you as a caregiver with information about the following: Your healthcare providers will help you understand the roles that you and your loved one have in keeping heart failure under control.
What Heart Failure Is
For many people heart failure can be confusing. It does not mean that the heart has stopped or is about to stop. It means the heart does not pump well enough to meet the body’s needs.
Here are some of the common causes of heart disease:
- Coronary artery disease or clogged arteries (the most common)
- A previous heart attack (of which your loved one may or may not have been aware)
- High blood pressure
- Heart valve damage or disease
- Infection of the heart muscle
- Alcohol abuse or heavy drinking
Heart failure is a serious, usually chronic disorder. Its symptoms may worsen with infection or other physical stress. Worsening of symptoms may indicate increasing heart failure. You and your loved one can take control and manage the symptoms of heart failure.
How Heart Failure Progresses
In the early stages of heart failure, the heart tries to compensate by enlarging, increasing its muscle mass, and pumping faster. The heart enlarges initially, just as it would to meet the demands of regular exercise. Over time, however, the heart muscle stretches and weakens. By increasing its muscle mass, the heart builds more muscle fibers, enabling it to pump more strongly; and pumping faster increases the output of blood flow from the heart into circulation.
Because the heart can compensate in these ways, people can live with heart failure for quite
some time before it is diagnosed.
When the heart cannot keep up and becomes weak, blood may back up into other areas of the body. This causes fluid buildup in the lungs, the liver, and the arms and legs. A person loses energy, becomes short of breath, and experiences other problems that prompt a visit to the doctor.
Self-Care and Daily Checks
Those with heart failure must monitor their symptoms daily. At times it is difficult for people with heart failure to notice changes in symptoms. Family and friends help by being aware of and monitoring symptoms along with the patient. Noticing changes early and taking steps to manage them can prevent increased heart failure. Use the Heart Failure Zone as a daily check.
Friends, family, and other caregivers will benefit from learning more about what is needed to care for a person with heart failure. It is especially important to understand the treatment and to be aware of your loved one’s treatment preferences.
Caring for Your Loved One at Home
Talk with your loved one about what he or she would need to do to have a good day. At a minimum you and your loved one will need the following supplies and support practices:
- A digital scale to record daily weight
- Routine medications
- A written medication schedule
- Stand-by or as-needed medications (for treatment of pain, shortness of breath, or weight gain)
- A diet plan with menu suggestions and meal replacement choices
- An emergency plan for going to the hospital and accepting CPR (cardiopulmonary resuscitation)
Heart Failure Management: The Basics
You can help your loved one by following a few key steps. We encourage you to talk with your loved one and to work out a plan together. Write down your plan and keep it where both of you—as well as any backup caregivers—can easily refer to it.
Keeping a Daily Log
Use the Heart Failure Zone to keep track of how your loved one is feeling each day. By using this same information, you will be able to provide your loved one’s healthcare provider
with accurate and up-to-date reports.
This record can be as simple as a spiral-bound notebook. Encourage your loved one to get in the habit of recording his or her information each day. What you see and what your loved one feels may be different. You are both right.
- Keep a pen and paper by the phone and have them with you during doctor appointments to write down any new instructions.
- Tell the healthcare provider about any medications your loved one is taking.
- Carry a printed medication list with you at all times.
- Ask questions. If you don’t understand what the healthcare provider recommends, ask
- for clarification.
- Always have your daily log and medication schedule handy; this will make your talks with healthcare providers more effective and less stressful.
Keeping active can decrease symptoms, improve heart function, and generally help the person with heart failure feel better. You can help your loved one become more active by encouraging
the following activities:
- Discuss suitable activities with the healthcare provider.
- Set a goal to sit or walk 10 minutes out of doors daily, then plan to increase this time to 30 minutes daily.
- Allow 10 to 15 minutes of warmup and cool-down time before and after activity.
- Stop and rest if your loved one develops chest discomfort, dizziness, or weakness or has difficulty taking a deep breath.
- Note your activity progress in the daily log.
- Take the daily log to medical appointments and review it with your loved one’s healthcare provider.
What to Do If There is a Problem
Understanding when to call the doctor will enable both you and your loved one to feel less anxious or worried about what is happening.
- Don’t Panic: Shortness of breath and other symptoms can be frightening. Stay calm and try to calm your loved one. Remember that help is just a phone call away.
- Make the Call: Call the healthcare provider. Keep the number on hand and be prepared to answer questions about the symptoms your loved one is experiencing. This is where the Heart Failure Zone comes in handy.
- Follow Instructions: Often the healthcare provider will give you instructions over the phone for relieving symptoms. This might include taking additional medications or making a trip to the hospital.
Caring for You, the Caregiver
Heart failure results in many changes in the everyday lives of spouses, partners, and families. You may experience role changes, communication issues, and a disruption of your normal social patterns. Uncertainty about the future can take an emotional as well as a physical toll.
These are just some of the common challenges that caregivers face:
- Getting adequate sleep
- Maintaining a connection with the rest of the community
- Feeling as if you have “lost yourself”
- Feelings of fear, guilt, or anxiety
- Difficulty balancing your routine day-to-day activities with the changing needs of a loved one
- with a chronic illness
- Feeling the weight of financial pressures
- Knowing when you need help
- Difficulty communicating with healthcare providers
- Difficulty coping with changes in your relationship with your loved one
- Discussing the future and end-of-life issues
One of the most important things you can do for yourself and your loved one is to make time and space for yourself, and it is important that you be in the best possible health. Caregivers who devote themselves to their loved ones to the exclusion of their own needs become ill. You and your loved one will both benefit from your taking three 10-minute breaks per day.
- Take a 10-minute walk, even if it is just around the yard. Spend some time in the fresh air.
- Choose a location in your home as your “quiet place,” where you can pause, close your eyes, and take a few deep breaths. Keep some favorite pictures, a good book, or some magazines handy to just stop and enjoy for a few minutes.
- Take a break and meditate, pray, or listen to some music.
- Schedule your breaks: choose a time when your loved one is sleeping, eating, or watching TV. He or she will become accustomed to your brief, refreshing breaks.
Quiet time is not the only thing you need as a caregiver. Stress can affect you in other ways as well. Your time and energy are certainly limited, but as a caregiver you have a responsibility to not to put your own health on hold.
Maintaining good eating habits can be especially tough. You may notice a change in your eating habits, which may not be healthy. Your loved one may be on a special diet, and you may have other family members to feed. At times you may not eat much, but you need to eat right.
- Just like your breaks, plan your meals.
- Include deeply colored fruits and vegetable, whole grains, and high-fiber foods.
- Cut back on foods and beverages that contain added sugar and salt.
- If you are meeting with a dietitian about your loved one’s needs, ask about good healthy choices for yourself as well.
As a caregiver, you may think that your first responsibility is to your loved one, but it’s actually to yourself. That means getting help and following doctor’s orders for your own mental and physical well-being. It also means keeping your energy level up and reducing your risks by eating a healthy diet and getting the rest you need.
Effective communication is vital. As a caregiver you will be communicating with family, doctors, nurses, and insurance companies. Your loved one may not be able to communicate as clearly as he or she once did, due to fatigue or shortness of breath. When your communication is clear and constructive, you are more likely to get the response you need. Your stress level and added responsibilities may make it difficult to stay focused and make your needs and feelings understood. Here are a few tips for staying organized:
- Write down your questions for healthcare providers and take them to each appointment.
- Be clear and specific and speak directly to the other person. Don’t assume that they know what you feel or need.
- Build a strong relationship with your loved one’s healthcare providers.
- Speaking with the doctor assertively can be scary. But fostering a strong and honest relationship with your loved one’s healthcare team will help you better understand what you can and cannot control about the situation.
- Many caregivers experience periods of terrible isolation. If you feel that you are alone in your struggle, it can be a symptom that you are overwhelmed.
- If you find yourself feeling more and more exhausted, depressed, angry, and unable to sleep or eat well, you should seek help.
- Your friends want to know how you’re doing and what they can do to help. Make a list of things that others could help you with, then share your ideas with them.
- Often caregivers do not stay connected with their friends. If you were active in church or social organizations or are close to neighbors, ask for help. Even for a short time, these people can enable you to take the break you need to clear your head and think more effectively about your needs and choices.
- Talk to your doctor, your nurse, or a social worker about local support groups. Many houses of worship have supportive groups that welcome people of all faiths. Check with local nursing homes or hospitals about support groups, as well.
Sometimes a person with heart failure may have trouble following his or her treatment plan because of financial challenges. If this is the case, friends and family can help by asking healthcare providers about financial assistance programs for the following:
- Hospital and outpatient clinic fees. The hospital social worker is a good source of information about state and federal programs.
- Medications. Many drug companies have programs that provide medicines at reduced cost or free to those who qualify. The application process can be difficult for someone who is ill. Ask the healthcare provider about the programs and for help filling out the forms.
- Durable medical equipment such as oxygen. Insurance may cover some of the cost. A social worker can give you further assistance with paperwork.
- Recordkeeping. Many financial institutions have persons available to assist you.
- Local senior services organizations also have resources to assist and support you in financial matters.
Preferences in Advance Care Planning
Although it may be difficult to discuss death and dying, everyone benefits from knowing the wishes of the person who is ill. Sometimes family members and friends may think it is better to remain quiet about advance care planning because they do not wish to cause upset or because they feel their loved one has gone through enough already. But many patients, in fact, experience
a feeling of relief that someone is willing to talk about their feelings and desires. It is important to openly discuss topics associated with advanced care planning, such as a living will.
Ask your loved one’s healthcare provider about palliative care. Palliative care providers support patients and families living with serious illness. This type of care focuses on providing people with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. It
encompasses the whole self, caring for the physical, emotional, and spiritual needs
of patients and families to improve quality of life. Palliative care is appropriate at any
age and at any stage of illness.
Palliative care providers can help you and your loved one communicate openly and supportively. Communicating about advance care planning in a loving and caring way can help make these discussions easier. Palliative care providers can also
help you navigate the sometimes-confusing world of healthcare. This will assist you and your loved one in getting the most from your healthcare.