Heart Failure Patient Self-Management Workbook
CHAPTER 6:
Caregiver's guide
CARING FOR SOMEONE WITH HEART FAILURE
Managing heart failure isn’t easy, and people who’ve been diagnosed may not be able to do it alone. Physically, they often can’t handle all the tasks they once could. They have to deal with dietary and lifestyle changes, and an often complex regimen of medications.
Moreover, facing a serious illness and the thought of one’s own mortality can be overwhelming. Family members provide a much-needed source of care and support.
Becoming a caregiver for someone with heart failure requires a long-term commitment of time and energy. With regular contact, you can help them take small steps that eventually add up to real progress. Your support can make it easier for them to follow doctor recommendations at home. They will start to feel better and more in control of their condition and symptoms as a result.
People with heart failure often have cer tain physical limitations, but they also need to stay active and exercise moderately. Ask the doctor or other health care provider for advice about what your loved one should or shouldn’t do.
Naturally, it will take time for you to adjust to your new role as caregiver. Remember, there’s no one “right way” to give support.
The important thing is to get involved however you can.
It may help to know that you’re not alone. According to the National Family Caregivers Association, there are an estimated 25 million family caregivers in this country.
Many find themselves taking on this role in addition to many other responsibilities, such as a full-time job or raising children. It’s likely to be stressful and even frustrating at times, but the rewards can be great.
Doctors ask people with heart failure to change their lives – by eating differently, remembering medications, paying closer attention to their bodies, and reducing stress. Such changes are hard because they often require breaking long-time habits. But they’re usually easier when loved ones get involved. If you live with or are close to someone who has heart failure, you’re likely to have the greatest impact on their success in following instructions from the health care team.
We offer the following ideas to get you started, and encourage you to adapt them to your own circumstances and preferences.
LENDING EMOTIONAL AND MORAL SUPPORT
As a caregiver, you might help by...
- Acknowledging that change takes time. It’s natural for people to have trouble changing habits developed over many years. It might help your loved one to know that you realize this. Try not to nag them into doing what’s been recommended. Instead, listen to their concerns and stay positive, even if they fail to follow doctor’s orders. Offer encouragement and praise for any good new habits.
- Suggesting that your loved one join a support group for people with heart failure or other heart conditions. Ask your doctor for help in contacting a support group in your area. If you have an Internet connection, visit our hospital Web site listed on the first page of this notebook for a list of support group meetings. There are also discussion forums available on the Internet. Caution: Always discuss any advice you receive over the Internet, or from any other source, with your physician.
- Understanding that there may be some loss of physical intimacy with a husband or wife. The diagnosis of heart failure often means stopping or limiting sexual activity until the condition is under control.
HELPING WITH MEDICAL CARE ISSUES
With regard to your loved one’s treatment, you might help by...
- Participating actively during hospital and doctor visits without dominating the conversation. Help your loved one keep track of information about medication, diet and exercise, rehabilitation, and at-home record keeping. The volume of information might overwhelm you at first, so be sure to ask questions and take notes.
- Communicating with the doctor and other health care providers. Doctors often rely on family caregivers for information about the patient’s condition, changes in symptoms and progress with diet and exercise recommendations. They may ask you questions when you’re present at office visits. Don’t feel like you have to make excuses for your loved one if he or she isn’t making progress. The health care team needs to know how things really are at home.
- Helping the patient follow through on the health care team’s advice. Help them manage medications and follow any other prescribed treatments. Offer to exercise together regularly and, if necessary, quit smoking at the same time. Buy and prepare low-fat, low-cholesterol foods that your loved one will like, or emphasize why they’re so important. Use the Internet or local library to gather more advice on heart-healthy lifestyles.
For more helpful information, and some specific tips, see Chapter 2, “Diet,” Chapter 3, “Living With Heart Failure,” and Chapter 4, “Treatment: Medications and Surgery,” in this workbook.
Effective management of heart failure is often a group
effort. In addition to helping with medical care issues, you may suggest active outings based on how much activity your loved one can perform, prepare healthy meals, and do whatever else is needed to get everyone involved.Encourage other family members to make changes now to lower their own risk for heart failure.
A 1997 survey by the National Family Caregivers
Association found that many caregivers grow closer to their loved one and develop newfound inner strength.However, many also reported feeling depressed and
isolated, having less personal time, and receiving no
consistent help from other family members.You need to take these realities into account. Remember that caring for yourself will make you better able to care for someone else. The following pages offer several strategies to help you deal with the role of caregiver.
As a caregiver, you might benefit by...
- Sharing your feelings. Talk to the patient, other family members and friends, trusted advisors or anyone who can help you sort through your concerns. You might be feeling guilty right now, thinking you should have recognized past habits or symptoms that may have contributed to the present situation. You might feel depressed, or fearful about losing your loved one. Express your feelings and consider professional counseling if you are extremely distressed.
- Enlisting the help of family and friends. You can’t do everything on your own. If you are the primary caregiver, you’ll need to ask others for help when the patient isn’t feeling well. If family and friends aren’t available, seek out a volunteer group that provides such help. If you aren’t the primary caregiver but live nearby, help in whatever way you can. Visit or call more often. Offer to drive the patient to doctor appointments, pick up medications, prepare healthy meals, or help with household chores.
- Joining a caregiver support group. Spend time with others in similar situations. Call the social worker at your local hospital to find out when and where they meet. Or consider joining an online discussion group.
TAKING STEPS TO FEEL MORE IN CONTROL OF THE SITUATION
You might also benefit by...
- Learning more about heart failure. The more you know, the more in control you’re likely to feel. Reading this notebook is a good start. You also can ask your health care team for written information and reading recommendations, or do more research on your own.
- Planning for the future. Even though heart failure can be managed, it can’t be cured. You may derive peace of mind from working with your loved one to make sure that finances, wills, and insurance policies are in order.
Recognize the importance of...
- Making time for yourself. Make time for the activities you enjoy, such as reading, going to a movie, exercising, or visiting friends.
- Not blaming yourself for your loved one’s behavior. If they persistently refuse to go along with doctor recommendations, there’s little that you can do. Continue to offer support and encouragement.
WHEN QUICK ACTION IS NECESSARY
The very symptoms that help physicians diagnose heart failure might also show that the condition is worsening or not responding to current treatment. If your loved one suddenly experiences a new symptom, or their current symptoms worsen, call the doctor right away. Quick action could prevent an emergency trip to the hospital later.
HERE ARE THE WARNING SIGNS TO WATCH FOR:
- Sudden weight gain (2 or more pounds in a day, 5 or more pounds in a week, or whatever amount the doctor told you to report). That’s why it’s so important for patients to weigh themselves at the same time daily, after urinating, preferably before breakfast, in the same clothes, on the same scale and at the same spot.
- Chest pain or pressure.
- Dizziness or fainting.
- Shortness of breath while at rest (not related to exercise or exertion).
- An increase in swelling of the legs, ankles, or feet.
- Swelling or pain in the abdomen.
- Trouble sleeping (awakening short of breath, using more pillows).
- Frequent dry, hacking cough.
- Loss of appetite or nausea.
- Increased fatigue or feeling tired all the time.
- Increased heart rate or a feeling that your heart is racing.
- Memory loss, confusion or disorientation.
Of course, if your loved one is ever in severe distress, call an ambulance immediately. Some people with heart failure experience a sudden change in symptoms that requires emergency care.
Any serious illness raises important financial concerns for patients and their families. Every situation is different, but the following suggestions can help you start
dealing with pressing financial matters.
- Understand your loved one’s health insurance plan(s). Get a copy of the policy and read up on getting treatments pre-certified, submitting claims and other requirements. Talk with your loved one about what is covered by insurance. Keep in mind that some of the newest advances in treatment for heart failure (new medications, surgical procedures) are still technically "under investigation" in clinical studies. This might make a difference in whether or not an insurance plan will cover them. Work with the health care team on this issue.
- If necessary, seek financial assistance for treatment. It’s essential for heart failure patients to take all their medications as prescribed. If cost is a barrier, consider asking your physician about the Directory of Prescription Drug Patient Assistance Programs, issued by the Pharmaceutical Research and Manufacturers of America (PhRMA). This directory lists pharmaceutical company programs that provide drugs to physicians whose patients could not otherwise afford them. You also can ask the physician or nurse to refer you to a social worker who can help you deal with cost issues.
- Consider household finances. If the person with heart failure is the principal breadwinner or contributes significantly to household income, then some financial adjustments will be necessary. Check with your loved one to find out whether they have disability insurance; if so, you can begin the process of applying for benefits. If not, work with other family members to develop strategies for dealing with the loss of income.
As a caregiver, I have the right:
- To take care of myself. This is not an act of selfishness. It will enable me to take better care of my loved one.
- To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
- To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.
- To get angry, be depressed and express other difficult emotions occasionally.
- To reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt, anger or depression.
- To receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return.
- To take pride in what I am accomplishing, and to applaud the courage it sometimes takes to meet the needs of my loved one.
- To protect my individuality and my right to make a life for myself that will sustain me when my loved one no longer needs my full-time attention.
- To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.