For Caregivers

Planning for the Future

Being a caregiver to someone with a heart condition or who has survived a heart attack or stroke can be an ongoing commitment. Unlike taking care of someone who has a broken leg, the flu or another short-lived health issue, caring for someone with a chronic condition may mean years—even decades—of medical visits, treatments and lifestyle changes to help prevent problems.

Caregiving can also take an emotional toll and change relationships if you don’t take the time to talk about it. The old saying, “It’s a marathon, not a sprint,” certainly applies. But if you can plan ahead, you may find the journey much smoother.

Here are some things to consider:

  1. Have a plan.Think through how you can reasonably keep up with your normal day-to-day activities and responsibilities, while also caring for your loved one. Try to anticipate some of the challenges along the way. For example, who can you ask to be your backup if you can’t make it to an important doctor’s visit?  How will you limit lost days at work so that you don’t risk losing your job? How will and should caring for your child change over the course of his/her childhood and into adulthood?

    If you work, keep in mind that under The Family and Medical Leave Act (FMLA) you may be able to receive up to 12 unpaid weeks off during any 12-month period and your job will be protected. Find out more about FMLA on the Department of Labor's website.

  2. Make sure you can talk with the doctor. Because of privacy regulations, health care providers cannot talk with you about your loved one's condition unless they are given permission to do so.
  3. Be prepared to wear many hats. As a caregiver, you’ll likely take on many different roles and these may change over time. You will be a champion—providing support and encouragement and going to bat for your loved one to ensure they get the best care possible. You will be a confidant, lending a listening ear and offering comfort when fears, regret and worries take over. You might be the persistent nudge he or she needs to follow a heart-healthier diet, enroll in a cardiac rehabilitation program or be more active. You might also find yourself on the business side of the illness, keeping track of medical bills and following up with insurance claims. You may also find a reversal in traditional roles if you are caring for a parent with heart disease, which can be challenging. For advice on managing some of the day-to-day details, see our Managing the Details page.
  4. Don’t be overly protective or do too much. Focus on helping your loved one gain the know-how and skills to take care of themselves and feel in control. Try not to jump in and do everything. If you do, you’ll soon find yourself treading water, and the person you are caring for may feel even more helpless and dependent on you. If you care for a child with a congenital heart problem, empower him or her to get involved in their own care at an early age (encourage them to ask questions during appointments, know when and how to take medicine themselves, etc.).
  5. Don’t let the condition define your family. Parents of children with congenital heart disease will tell you that the condition can change the family dynamic and siblings report feeling that their lives are on hold. It takes work, but other caregivers say you should try to lead as normal a life as possible. Plan things to look forward to—fun outings, visits to see family or taking up a hobby together—so the condition doesn’t take center stage.
  6. Keep the lines of communication open. There will be times when you are frustrated. You might feel that your personal needs have been completely sidelined. It’s OK to talk openly and share your concerns. Be direct, but sensitive. It is very likely the person you are caring for already feels like a burden. Many people with heart disease get depressed and may take things out on you from time to time. By talking regularly, you will also know how he or she is feeling and whether more can be done.
  7. Join them. People with heart conditions need to focus on healthier living through regular exercise and a heart-healthy diet. Rather than making the person feel “different” to you, your other friends and family because they can’t have this or that, join them in adopting a healthier lifestyle that you can keep up with over time. Your health and heart will benefit too!
  8. Recognize the need to regain balance and maintain control of your life. You can’t be a caregiver 24/7. If you think you can, you are trying to do and be too much. Make sure to take care of yourself and recharge. Here's how.
  9. Know what symptoms or warning signs to watch for. Pay attention to your loved one’s symptoms. If you suspect he or she is having a heart attack or stroke, act fast and dial 9-1-1. Every second that passes is lost heart muscle or brain function, so don’t delay.
  10. Talk about advance directives. This is a good idea in general because we never know when we will get sick or hurt. Make sure your loved one’s wishes for medical treatment are written down; these legal documents help to avoid any confusion about life support and other steps health professionals should take in the event that the person becomes too ill to express him/herself.

  11. Caregivers' Questions to Ask the Doctor

    • What can we expect? How long will their recovery take?
    • What are the goals for treatment?
    • What lifestyle changes need to be made over the long-term?
    • Are there things my child can/can’t do because of this condition?
    • How can I help support him/her in leading a heart-healthier life?
    • What signs should I be paying attention to that might tell us things are getting worse?
    • How can we keep tabs on his/her progress?
    • What types of emotional changes do heart patients undergo?
    • How often should we schedule follow up appointments?
    • What medications is my loved one supposed to be taking and what is each one for?

    Heart disease can change everything, if you let it. The stress of caring for a loved one over the long-term can lead to changes in family dynamics, ongoing anxiety, financial pressures, and trouble balancing work and other responsibilities. For these reasons, it's very important to get help or connect with others in similar situations.

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