Living with congestive heart failure (CHF)

Prevent a CHF emergency

A heart weakened by congestive heart failure has a hard time pumping blood around the body. As the circulation slows down,

• the blood returning to the heart backs up, causing “congestion” (swelling) in the tissues;
• the kidneys can’t efficiently rid the body of water and salt, causing water to swell the legs, ankles, feet, and abdomen.

The swelling that results from this retention of fluid is called “edema.” It can be painful. Sometimes it gets so bad it adds pounds to the body’s weight. Any extra weight means extra work for an already stressed heart. When this cycle of fluid buildup spirals out of control, it can trigger a medical emergency and the need for hospitalization.

To avoid a crisis, check for these signs EVERY DAY:

• Sudden weight gain or loss
  Have your loved one weigh first thing in the morning, right after urinating and before drinking or eating. Ask your provider what is an acceptable change from one day to the next and how many pounds is too much. Know when you need to call the office.
• Swelling in the abdomen
  Check how clothing fits; look for tightness, tenderness, or bloating at the waist.
• Fatigue, shortness of breath
  Note any complaints of weakness or desire to reduce activity.

If you observe any one of these symptoms, contact your family member’s doctor immediately for guidance. The doctor may recommend changes in the day’s diet or fluid intake, or may modify other aspects of treatment.

Good communication with the doctor about symptoms that emerge at home is the simplest way to stay out of the ER!

Check with the doctor about other self-care activities that may help reduce the likelihood of edema. For example:

• Elevate the legs
  Sitting or lying down with legs elevated will help blood flow to the heart
• Wear compression socks
  These specialized stockings help minimize fluid buildup in the legs
• Massage the legs
  Even just a light stroking can help move fluid through.
• Go for a walk
  When the body gets moving, so does the fluid.
• Reduce salt intake
  You will be amazed at how little salt can result in a lot of swelling.

Limit salt

Has your family member been advised to reduce the salt in his or her diet? Do you have doubts about your loved one’s ability to follow through? Food, after all, is one of life’s pleasures. And salt (sodium) is a key flavor enhancer. The simplest solution is to remove the main sources of salt, add new flavors in its place, and eliminate commercially prepared foods.

Remove the main sources of salt. (These two steps reduce salt intake by 30%!)

• Take the saltshaker off the table.
• Remove the salt supply from the kitchen.

Add flavor with herbs and spices. Experiment.

• At the table:
  nonsalt dried herb blends, lemon juice, balsamic vinegar, freshly ground pepper, toasted sesame oil
• In cooking:
  fresh or dried savory herbs (basil, thyme, sage), exotic spices (curry, ginger, chipotle pepper), citrus juice, grated citrus rind
• Be careful with prepared substitutes
  Do not provide a commercial “salt substitute” without the doctor’s permission. It may contain other chemicals that are equally harmful.

Eliminate commercially prepared foods.
An entire day’s “salt budget” can be blown in a single serving of prepared dinners, luncheon meats, quick breads/cereals, and common condiments and marinades. But you don’t have to spend hours in the kitchen, cooking from scratch. Consider instead:

• Creating toppings
  Sautéed mushrooms, browned onions, homemade pesto or chutney. Freeze in small portions that are easy to grab and warm at mealtime.
• Making mixes
  Make your own mixes for pancakes, cornbread, and muffins with low-sodium baking powder.
• Cooking in bulk
  Roast a whole chicken, pork roast, or meatloaf. Leave the leftovers for sandwiches. Save the bones and bits for a savory soup base.
• Cooking slowly
  A slow cooker allows flavors to develop in stews and casseroles. Put the ingredients together when it’s convenient for you. Use fresh, frozen, or low-sodium foods.

Address fatigue

Does your loved one seem to “run out of gas” quickly, even when doing simple things around the house? Help your family member learn to conserve energy—physical energy—so he or she has enough “fuel” to enjoy special activities and to exercise according to doctor’s orders.

It’s a simple strategy: Consider that there’s a limited amount of energy each day. If your relative is careful how energy is used for the routine tasks in life, he or she will have enough left over for necessary exercise and life’s pleasures.

Plan for the entire day and pace activities. Encourage your loved one to

• Allow ample time
  Planning ahead allows for a more leisurely pace. Rushing wastes energy.
• Alternate activity with rest
  Divide large chores into smaller tasks spread across the day or week.
• Work smarter
  Minimize trips up/down stairs. Shop with a list and in as few stores as possible. Cook in quantity and freeze the extra. Soak dishes first for less scrubbing later. After a bath, slip on a terrycloth bathrobe instead of drying with a towel.
• Get help when you can
  Have medications and groceries delivered.

Throughout the day, there are many opportunities to reduce standing, walking, lifting, and bending:

• Sit down whenever possible
  When cooking, cleaning, bathing, dressing, or grooming face and hair, have a stool or seat handy.
• Create task stations
  Lay out supplies at waist height so everything is within easy reach before you start cooking, cleaning, bathing, or dressing.
• Wheel or wear; don’t fetch
  Use a cart on wheels, a walker with a basket, a pocketed apron, or a fisherman’s vest to keep supplies at hand.
• Use extensions
  To avoid bending and reaching, use a grabber for objects, an elevated toilet seat, and elongated handles on shoehorns, brushes, and dustpans.

CHF tips for families

Anyone living with or helping someone with CHF will find it is a big job. And it takes its toll. In addition to daily assistance, CHF is unpredictable. There are good days and bad days. Your loved one can tire easily and need to cancel even the most cherished plans.

“Cabin fever”
The inability to make plans and get out of the house can be especially hard for spouses who are used to doing things together. “Cabin fever” is common for both the patient and family members. So is depression.

The importance of breaks
Staying cooped up and becoming depressed yourself will not be of service to the person you care for. You need to cultivate other activities to recharge your batteries.

Isolation and depression
Isolation frequently leads to depression in both patients and their partners. It has also been linked with worsening physical health among family caregivers. Unfortunately, spouses tend to feel guilty if they go out with friends or engage in pleasurable activities. But isolation only puts their own health, and ability to care for their loved one, at risk.

Solutions to “cabin fever”

• Create personal time
  Set aside time each day for a pleasant activity unrelated to caregiving. Even just 10 minutes reading a favorite book or talking with a friend can do wonders.
• Stay active
  Do something physical every day, even if it’s just a walk around the house or yard.
• Reach out
  Maintain relationships with others, even if just by phone or email. Join an online support group to connect with people who understand.
• Do something carefree
  Take a real break now and then. Do something carefree. There are 168 hours in a week. Taking one or two hours for personal time without responsibilities is not too much to ask!

Explore palliative care

If your loved one has had several recent ER visits, it sounds like the symptoms are flaring a lot. You might want to ask for a palliative care consult. (You don’t have to have numerous ER visits, though. Concern about your loved one’s quality of life is reason enough.)

The “relief” experts
Palliative care is a special branch of medicine. Its providers are experienced in easing physical and emotional distress. They focus on the relief of difficult symptoms. Their goal is to improve quality of life for the patient and the family.

Holistic approach
Palliative care providers look at medical and nonmedical solutions. Strategies may include drugs or drainage for the swelling. They may also include options such as massage, counseling, or exercises for easier breathing.

Be ready for the ER

About one of every five seniors goes to the Emergency Room in a given year. Most ER visits are literally “by accident.” But some conditions, such as CHF, result in frequent trips to the ER. Taking a few simple steps to prepare ahead of time can reduce some of the stress.

Create an “ER kit” and keep it updated with

• Medical information
  A list of your loved one’s conditions, medications, allergies, and past surgeries. Include contact information for current physicians.
• Insurance information
  A copy of your family member’s insurance card(s). Include any prescription or supplemental policies.
• Advance directive
  This helps ensure your loved one’s preferences for life-sustaining treatment are followed. (See our article about health care planning.)
• A change of clothes
  This will come in handy if your loved one’s garments become wet or soiled.
• Stress-relieving supplies
  ER visits are often lengthy and tiring. Pack water and snacks and cash for purchases. A pen and paper, a light sweater, and reading material or CDs can also come in handy.

What to Do: Strive for balance.

• Stay calm
  Support your loved one with your calm attention.
• Provide information to ER staff
  Your input is essential to help them understand what’s different from “normal.”
• Ask for periodicupdates
  It’s fine to ask every 40 to 60 minutes for an update. If your family member’s condition seems to worsen while you are waiting, alert ER staff immediately.
• Observe and take notes
  Write down what procedures were done and what medications were given.
• Get instructions
  Don’t leave without written instructions. Ask specifically about the diagnosis, follow-up care, and any new prescriptions. Be sure you understand when to call the doctor. If you are uncertain, ask questions until you know what to do.

Treatment decisions

If your loved one is seriously ill, he or she probably needs to make decisions about which treatments to pursue. These are deeply personal choices. And they aren’t always easy.

Weigh the options

• Compare pros and cons
  Gather information into one document, perhaps a spreadsheet. Note as much as you can about each treatment:
  • What are the benefits/advantages?
  • What are the risks/disadvantages? For instance, are there any side effects?
  • What will “success” look like? (“How good does it get?”)
  • How likely is that outcome?
  • Will your loved one still be able to do the things that give him or her pleasure or purpose?
  • What about the option of “no treatment”? If a cure is questionable and treatments are difficult, this option may be worth considering. The person you care for might prefer to stay comfortable and pain free and spend his or her remaining time and limited energy on those activities that provide pleasure and meaning in life.
• Apply personal values
  For each treatment option, rate how important each benefit is: five stars for extremely important versus one star if it doesn’t matter much. Use this system for rating the disadvantages, too. Looking at the number of stars for each option is very helpful while making a decision.
• Ask the support system
  Serious treatment decisions are often made in consultation with others: the doctor, a spouse, other family members. They can be valuable counselors. But ultimately the decision rests with the patient. What does the support system say? Does your loved one agree with them? Why or why not?

Our article about quality of life may offer insights to help with difficult choices.