A caregiver s guide congestive heart failure

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A Caregiver's Guide: Congestive Heart Failure

This is a guide for family members, friends and other caregivers who are supporting someone who has congestive heart failure (CHF).

This is a guide for family members, friends and other caregivers who are supporting someone who has congestive heart failure (CHF).

Contents

What is congestive heart failure? ............................................................... 1 Heart failure over time ................................................................................... 2 Focusing on comfort

Anxiety ......................................................................................................... 2 Confusion .................................................................................................... 2 Emotional health....................................................................................... 3 Difficulty breathing and cough .......................................................... 3 Edema ........................................................................................................... 4 Feeling tired and weak .......................................................................... 4 Abdominal discomfort ........................................................................... 5 Difficulty sleeping ................................................................................... 5 Pain ................................................................................................................ 5 Skin care ...................................................................................................... 6 Implanted devices in the heart..................................................................... 6 Heart failure emergencies ............................................................................. 7

REV 9/17

Page 1

What is Congestive Heart Failure?

In congestive heart failure, the heart cannot supply the body with adequate blood, because the heart's pumping power has been weakened due to damaged muscle. This could be caused by heart disease, heart attack, enlarged heart, high blood pressure, valve disease, thyroid disease, kidney disease, diabetes, and certain birth defects in the heart. Often, people with heart failure have to be admitted to the hospital or see a doctor for frequent medication changes.

When someone has heart failure:

? Their blood moves through the heart and body at a slower rate and pressure in the heart increases.

? The heart begins to struggle to pump blood, causing oxygen and nutrient delivery to be impaired.

? Their heart may start stretching to hold more blood to pump through the body, or it may become stiff. This helps keep blood flowing, but also weakens the heart and makes it less efficient.

? They might also have salt and water retention, which can cause fluid buildup in the body or lungs.

Heart failure can be in the left side of the heart, the right side, or both. The chart below shows signs or symptoms someone may experience, depending on where their heart failure is.

Signs of Left-sided Heart Failure Fluid buildup in lungs Difficulty breathing, fast breathing

Difficulty breathing while lying down Dry, hacking or bloody cough

Loud breathing sounds (wheezes) Fast or irregular heart rate Anxiety, restlessness, confusion Low energy, tired Bluish skin (related to low blood oxygen levels), pale skin

Signs of Right-sided Heart Failure Fluid buildup in the body

Low blood flow through kidneys, causing less urination and fluid buildup

Swelling in the body, weight gain

Needing to urinate more often at night, or less urination

Nausea (related to bloating in stomach) Decreased appetite (due to bloating in stomach) Weakness, low energy

Fluid buildup in abdomen Enlarged/swollen neck veins, enlarged liver and spleen

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What is it like to have heart failure?

During their illness, people with congestive heart failure (CHF) may have had multiple tests or procedures, such as X-rays, EKGs and stress tests. Some will have had surgery, valve repairs or replacements, pacemaker or defibrillator placement, or a heart transplant.

Heart Failure Over Time

Congestive heart failure can be somewhat stable at first, and may only require routine check-ups with a doctor. In the next stages, people might need more support and hospitalizations. There can be ups and downs, with a general worsening of the disease and symptoms over time. The last stage of decline can last from days to weeks. Even so, death can be unexpected due to earlier patterns of the person getting worse, then better. People often believe they can "get through" one more time as they have done before.

It is very hard to predict how someone with heart failure will decline over time. Thirty-five to 45 percent of people with heart failure experience sudden death.

Medical management of heart failure can include:

? treating and monitoring fluid build-up based on weight (gaining weight might be a sign of fluid build-up), and

? using medications and treatments to manage symptoms of the CHF. One commonly used medication is a diuretic, which rids the body of extra fluid.

Focusing on Comfort

People with heart failure may have a number of uncomfortable issues. Here are some ways to help bring relief to a person who is suffering from heart failure.

Anxiety

Thirty percent of people with congestive heart failure experience some form of anxiety.

? If you sense a problem and the person is able to respond, ask if they are feeling anxious or restless.

? Ask what is making them feel anxious; treating the cause or symptom can help.

? Ask what has helped when they have felt anxious in the past.

? Offer support and reassurance.

Suggestions for care:

? Try distraction or guided imagery.

? Guide them through simple breathing techniques, such as pursed-lips breathing: Tell the person to breathe deeply through their nose ("smell the flowers") and exhale through pursed lips ("blow out the candle").

? Use medications for anxiety that have been ordered by their doctor.

Confusion

There are many possible causes of confusion in people with heart failure. They might have low oxygen levels, symptoms may be getting worse, or they could be reacting to new or changed medications.

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Suggestions for care:

? Use basic reminders to re-orient them: "You are at home and today is Wednesday."

? Keep their room well-lit, with familiar objects, a visible clock and calendar.

? Try to limit noise.

? The presence of familiar faces and voices can calm them.

? Ask PalliaHealth or their primary care doctor about other ideas or support.

Remember:

? If someone with heart failure has unexpected changes and you are concerned about their safety, call their doctor.

? Sometimes we can find the cause of the confusion and work to treat it; however, the symptoms could be caused by worsening disease, which makes it more difficult to treat.

Emotional Health: Depression, anger, guilt, and thoughts of suicide

Depression is common in people with heart failure (up to 59 percent). In addition to depression, they can experience despair, anger, regret, guilt and thoughts of suicide.

People with heart failure often come to a point where they have found a way to live with the ups and downs of the disease. They may believe that there is always something more that can be done; the ups and downs can make them think that they will recover again each time symptoms get worse. And as with other illnesses, there can be disheartening financial worries as medical costs build.

Suggestions for Care:

? Encourage the person to talk through their feelings. Sharing their experience with others can be helpful.

? Consider talking with their doctor about medications for depression.

Difficulty Breathing and Cough

One study suggests that 61 percent of people with heart failure have shortness of breath. When the left side of the heart doesn't pump the way it should, fluid collects in the lungs they can't expand to let enough air in. Breathing gets harder, and the person may feel short of breath, especially when they are moving around or lying down flat.

Suggestions for care:

? Be calm and reassuring. ? Consider using oxygen. ? Try breathing techniques, such as pursed-

lips breathing: Tell the person to breathe deeply through their nose ("smell the flowers") and exhale through pursed lips ("blow out the candle"). ? Keep the room cool. Warm air can "feel" heavier. ? Cool air from a fan directed at the face can make people feel like they are breathing easier. ? Help them find ways to conserve their energy. Is getting up to the bathroom exhausting? Consider putting a commode beside of the bed. Talk to their doctor about other ways to conserve energy.

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? Reclining can make breathing harder for people with heart failure. Lift the head of the bed or prop them on pillows.

? If sitting, have them lean forward with their elbows on a table.

? Talk with their doctor about medications. Are they working the way they should? Do they need to be changed or increased?

? If the person has a cough, cough medicine can be helpful.

? Morphine can make them feel like they don't have to work as hard to catch their breath.

? Giving their breathing medications before they move can help them better tolerate activity.

? If the person is having difficulty breathing that continues to get worse, call their doctor.

Edema (Fluid Build-up)

When the right side of the heart isn't working well, fluid can collect in the feet and lower legs. Puffy legs are a sign of right-side heart failure, especially if you can press on the area and a dent or "pit" remains. As right-sided heart failure gets worse, the upper legs, genital area and abdomen can begin to collect fluid. The person might also gain weight from the fluid that accumulates.

Suggestions for care:

? Limit the amount of fluid or salty food the person drinks and eats. If they take in extra fluid or salty foods (foods with high sodium), their swelling could get worse and they could become uncomfortable.

? Talk to their doctor about diuretics-- medications that can help the body get rid of extra fluid.

? Ask their doctor about other options for fluid removal that could help reduce swelling in the person's abdomen.

? If fluid appears to be "leaking" from the areas of their body that are swollen, use absorbent towels to catch the fluid. Change the towels as necessary to keep their bed dry.

? Be careful to prevent falls: People who have a lot of swelling are more likely to fall, as movement becomes awkward.

? Elevate the legs if swelling is uncomfortable. When legs are elevated (if they are lying down or in a recliner), they might need to urinate more often.

Feeling Tired and Weak

Feeling tired or weak has a big effect on the lives of people with heart failure. This can be caused by things like infection, dehydration and depression. If we cannot completely treat the cause, caregivers can offer support in other ways.

Suggestions for care:

? Encourage them to avoid "overdoing it" and help them find ways to conserve energy.

? Help them set limits: Find out what times of the day they have the most energy, and plan activities during that time.

? Discuss their goals. If getting clean and dressed drains their energy and prevents them from doing things that are important to them, consider finding help in those areas.

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