Congestive heart failure (CHF) is a condition that requires a lot of daily management. As a result, it impacts not only the patient, but also family and friends. Without careful monitoring, your loved one can end up with scary symptoms that often result in hospitalization. On the other hand, careful following of dietary restrictions and daily weight and blood pressure checks can nip these frightening flares in the bud.
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 relative can tire easily and need to cancel even the most cherished plans. “Cabin fever” is common for both the patient and family members. So is depression.
Family members of course want to help. But they also need breaks. When you are “on” you are “on.” But you need time away to recharge your batteries. Staying cooped up and becoming depressed yourself will not be of service to your loved one. You need to cultivate other activities and interests so you can come back to your caregiving with renewed energy.
If your loved one has had several recent ER visits, or you are just concerned about his or her physical symptoms or emotional well-being, you might want to ask for a palliative care consult. Palliative care providers are experienced in easing the physical and emotional distress of living day-to-day with a serious condition. They take a holistic approach. They look at medical and non-medical solutions to the challenges of daily living for both the patient and family members.
In the meantime, here are some things you can do to make daily life with CHF the very best possible:
Avoiding crises with congestive heart failure
A heart weakened by congestive heart failure (CHF) 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 gain in the legs, ankles, feet, and abdomen.
The swelling that results from this retention of fluid is called “edema.” It adds pounds to the body’s weight. And any extra weight means extra work for an already stressed heart. When this cycle of fluid build up 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 doctor 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:
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- Sitting or lying down with legs elevated to help blood flow to the heart.
- Wearing specialized stockings to help minimize fluid buildup in the legs.
- Lightly stroking or massaging legs, or doing simple exercises, to get the fluid moving.
- Reducing salt intake
Diet: Reducing salt
Has your family member been advised to reduce the salt in his or her diet? Do you have doubts about your relative’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, and grated citrus rind.
- Do not provide a commercial “salt substitute” without the doctor’s permission.
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:
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- 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.
- 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.
Fatigue: When your loved one gets tired easily
Does the person you care for 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 exercise according to doctor’s orders.
It’s a simple strategy: Consider that there’s a limited amount of energy each day. If you’re careful how you use it for the routine tasks in life, you will have enough left over for necessary exercise and life’s pleasures.
Plan for the entire day and pace activities. Encourage your relative to:
- Allow ample time for what needs to get done. 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, consider 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 an elevated toilet seat, a grabber for objects, and elongated handles on shoehorns, brushes, and dustpans.
By learning to operate on “cruise control” whenever possible, your family member can get further on a day’s tank of energy.
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How to beat "cabin fever"
Feeling housebound is common among family caregivers, and is particularly so for partners caring for a loved one with an “unpredictable” disease. Some conditions, such as congestive heart failure, make planning difficult because the patient’s stamina can fluctuate dramatically. The inability to make plans and get out of the house can be especially hard for spouses who are used to doing things together.
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 staying cooped up only puts their own health, and ability to care for their loved one, at risk.
There are many solutions to “cabin fever.” Help your relative’s spouse:
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- Reach out. Maintain relationships with friends and family, even if just by phone or email. Join an online support group to connect with others who understand.
- Create personal time. Set aside time each day for a pleasant activity, unrelated to caregiving.
- Stay active. Do something physical every day, even if it’s just a walk around the house or yard.
- Get out of the house. Take a real break. Do something carefree. There are 168 hours in a week. Taking one or two hours for personal time without responsibilities is not too much!
- Safeguard health. Encourage your loved one’s spouse to talk to a doctor if you think he or she may be depressed. Depressed caregivers have much greater health risks. If they hesitate, remind them they will not be able to help their partner if their own health goes south!
If you have to go to the Emergency Room
About one of every five seniors goes to the ER in a given year. Most ER visits are literally “by accident.” But some conditions, like congestive heart failure, often 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 supplemental policies.
- Advance directive: This helps ensure your loved one’s preferences for life-sustaining treatment are followed.
- A change of clothes in case 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.
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- Support your relative with your calm attention.
- Provide information to ER staff as requested. Your input is essential to help them understand what’s different from “normal.”
- Ask for periodic updates. 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.
Making treatment decisions
If your loved one is seriously ill, he or she is probably needing to make decisions about which treatments to pursue. These are deeply personal choices. And they aren’t always easy.
The University of Ottawa has developed an interactive decision-making guide for evaluating options. It helps you compare the alternatives, apples with apples, by:
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- Gathering information into one document. Note as much as you can about each treatment: What are the benefits/advantages? What are the risks/disadvantages? Are there any side effects? What will “success” look like? (“How good does it get?”) How likely is that outcome? Will your family member still be able to do the things that give him or her purpose? If a cure is questionable, and treatments are difficult, you might want to include the option of not seeking treatment. Your loved one 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. Palliative care may be the wisest course.
- Applying personal values. For each 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. Looking at the number of stars for each option is very helpful in making a decision.
- Assessing the support system. Serious treatment decisions are often made in consultation with others: the doctor, a spouse, other family members. The decision tool helps highlight the role others play in the process.
- Identifying the next steps. As you work with the tool, it will become clear what’s missing. Maybe you need more information. Perhaps your family member wants to talk with others who have made the same choice.