This Patient Guide is written for the loved ones of heart patients who are dealing with the short-term stress that comes with a test, procedure or recent diagnosis of heart disease. It explains why support is so important to a loved one with heart disease. It also offers practical strategies on how to support a loved one while also taking care of yourself.
Putting yourself first
People cannot help others if they do not take care of themselves. It is important to deal with the intense feelings that commonly arise when a loved one is dealing with heart disease. Otherwise, these intense feelings could suddenly overwhelm you when you are behind the wheel or on the job or taking care of a child.
Common feelings that may arise include the following:
Fear. You may find yourself fearing what will happen next. Your greatest fear might be that your loved one is actually going to die. It may also be very frightening to see your loved one in a hospital or to see that your loved one is scared, too.
Sadness. You may find yourself grieving a loss related to your loved one’s heart disease. You may miss the time when you did not have to think or worry about your loved one as a heart patient. You may wish that things could be as they once were.
Anger. You may find yourself resenting the amount of time or attention that your loved one needs from you. You may also feel angry that your loved one made unhealthy lifestyle choices that could have affected his or her health, such as smoking, neglecting to lose weight, eating an unhealthy diet, avoiding exercise and so forth.
Guilt. You may feel like you could have done something to prevent your loved one’s disease, or that you should somehow be able to do more for him or her (e.g., calling or visiting more).
Two keys to dealing with these feelings are learning as much as you can about your loved one’s diagnosis, and keeping communication open with your loved one and other people. As much as possible, keep listening to, and talking with, your loved one and other friends/family members about the intense feelings often associated with heart disease. Support groups and counselors are also available.
Learning what to expect
Learn everything you can about your loved one’s diagnosis, tests that have been or will be performed, and available treatments. For general information, you can use valuable resources such as this site. For specific information about your loved one’s medical status, your loved one’s medical team will likely be open to your questions.
If you live with your loved one, then it will also be important to learn how to prepare for an emergency. Just to be safe, you and your loved one should know in advance where the nearest hospital is that can handle a cardiac emergency, that lists your loved one’s physician as having hospital privileges and that is covered by health insurance. You should also keep a list of the current medications and dosages that your loved one is taking. Finally, keep the physician’s number by the phone at all times.
Giving support
Research has consistently shown how people’s cardiovascular health can improve when they are supported by their loved ones. These research findings include the following:
Married couples who felt supported by their spouse and other family members showed a healthier cardiovascular response to stress than married couples who did not feel supported.
Heart attack survivors who felt supported by their loved ones were more likely to survive the following year. These findings held true even when patients were experiencing depression, which has been considered a significant risk factor.
Patients who underwent heart surgery recovered significantly faster if they were supported by hospital staff with pre-operative exercise and education classes, as well as at least one caring phone call before surgery.
If you are wondering how else to support your loved one (in addition to keeping communication open), an excellent strategy is to help keep your loved one’s household running as smoothly as possible:
If you are living in that household, this might mean asking for help, which can be difficult. Talk openly about how you are doing and what you need. Remember that people cannot read your mind to know what you need to keep things going. They do not know if you need them to bring you a big pot of soup or to pick up a child from school. You might also consider hiring some temporary help, such as someone to clean the house or to watch young children for you. Keep in mind the importance of taking care of yourself first.
If you are not living in that household but live close by, try offering specific suggestions about how you could help. Specific suggestions include, “Do you need me to watch the kids tomorrow?” or “Can I bring over a home-cooked meal on Tuesday?” In many cases, people are more likely to accept these specific offers than if more general statements are made, such as, “Just let me know if you need anything.”
If you are not living in or close to that household, you can still show support from across the miles. In addition to keeping communication open through cards, e-mails and phone calls, consider whether financial support would be appropriate. For example, you could send money for a maid to clean the house, or for a taxi to resolve transportation problems on a difficult day. You could send a gift certificate to a local restaurant or bookstore. As much as possible, be available without being pushy.
Young heart patients
Children may not have an adult’s vocabulary, but they are remarkably good at picking up on feelings. If you haven’t gotten a hold on your own fears, children are very likely to pick up on them. By learning what to expect, you can conquer your own fear of the unknown, and help educate the young heart patient (and any young family members) about what to expect. Pediatric programs are also available at many hospitals to help educate children about what to expect from medical tests and procedures.
Because children tend to be remarkably resilient, one of the best things you can do for them is handle your own feelings well enough so that your own fears and sadness do not interfere in a child’s unique coping process. For example, be prepared for the tough questions that children are often brave enough to ask. Experts generally frown upon lying to your children, but you can answer a direct question with a true statement or a loving joke instead of a direct answer. For example, if your child is scheduled for surgery and asks, “Are you worried that I might die?” You could answer, “I’m worried that you are not going to have enough room for all the balloons that people have been sending you!” or “I’m worried that if your nana sends you any more presents, then all the other children in this hospital are going to get jealous!”
When dealing with your own feelings as the parent of a young heart patient, remember that you are not alone. According to the American Heart Association’s Heart and Stroke Statistics - 2005 Update, about 36,000 babies are born with heart defects every year. Thousands of other children develop heart problems from diseases such as rheumatic fever or Kawasaki disease.
Because of the large number of parents dealing with this situation, support groups are available around the United States. Like everyone else, parents need to remember that they must take care of themselves in order to take care of anyone else. That means getting enough sleep, eating balanced meals and so forth. For more information on parental support groups, contact your local hospital or local chapter of the American Heart Association.
Elderly heart patients
Studies have found that elderly patients without support were three times as likely to experience heart-related complications (e.g., a heart attack) after being hospitalized for heart failure. This underscores the importance of support for elderly loved ones, but offering that support can present some difficult challenges.
First, even when elderly patients are dear family members, their personality might change if they are feeling ill or in pain. This is particularly true if they have been diagnosed with a mild form of dementia or Alzheimer’s disease. Sometimes the best thing you can do to support an elderly patient who is acting differently than normal is to work with the staff at whatever facility they are in. Keep aware of the treatment that the elderly patient is receiving, and listen to the staff about how the elderly patient acts when you are not around. As the staff will likely tell you, elderly patients tend to enjoy your visits more than you may think.
Second, it can be challenging to support an elderly patient who does not want to follow the physician’s recommendation for treatment. Some experts believe this is a sign of depression, which is believed to be largely undertreated in the elderly population. Other experts believe that emotionally healthy elderly people should have the right to decide for themselves how far they are willing to go to fight for their lives. These are difficult issues for any family, but as a general rule, please contact a health professional if you believe that an elderly patient might be experiencing depression or confusion that could interfere with healthcare choices.
Third, it can be extremely challenging to talk with your loved one about certain legal preparations, such as writing a will or completing advance directives. On one hand, it is vital to know your loved one’s wishes. On the other hand, deep emotions associated with this topic often lead people to avoid it. One strategy for making the conversation a little easier is to first learn everything you can about Do Not Resuscitate (DNR) orders, living wills, healthcare proxies and organ/tissue donation. You may also wish to speak with a lawyer for additional guidance and services.
Questions for your doctor
Preparing questions in advance can help patients to have more meaningful discussions with their physicians regarding their conditions. Patients may wish to ask their doctor the following questions about when a loved one has heart disease:
What are the best ways I can help a loved one with heart disease?
Do I have any health issues that can hinder my caretaker role?
Do you recommend any support groups or other sources of help?
Do other family members have increased risk of heart disease?
If so, what preventive measures can help?
How much responsibility should I take for my loved one's treatment?
Can you recommend a resource that I can use to better educate myself on my loved one's condition?
Is there someone I can talk to if I have questions about my loved one's condition?
