For Caregivers

Managing the Details

Like many caregivers, you probably didn’t know exactly what caregiving would entail until you suddenly found yourself in the thick of it. Unfortunately, this new charge is often thrust on us when we least expect it. It also happens just as we are trying to come to terms with the news of a loved one’s diagnosis and what it means for their—and our—future.

There is a lot to keep up with when caring for someone with heart disease. But try not to feel overwhelmed.

Here are some tips to help you manage the details and stay organized:

  • Educate yourself about your loved one's condition. Information is power. Explore CardioSmart to learn about your loved one’s diagnosis, read about the latest research, what questions to ask and how to connect with others. Doing your own research will help you feel more informed and empowered to ask questions of the health care team. When you join CardioSmart, include “Caregiver” as an interest area in your profile. For parents, find out what the child can and can’t do and allow them to self-limit.

  • Go to medical appointments when you can and take notes. Even when we are healthy, there is a lot of information to digest during a doctor’s visit. People with heart disease often benefit from having someone else in the room as well. You can help take notes, ask questions, request copies of medical records and provide moral support.

  • Keep track of test results. It’s important that you or your loved one ask for copies of test results. For example, knowing cholesterol and glucose levels and how they change over time is an important part of managing heart disease. Keep a notebook or file and write your numbers in it.

  • Make sure you know what medications are being taken and why. People with heart disease often take multiple medications. Sometimes it is hard to remember when and how to take all of them. Certain medications can also interact to change the way each works and may be dangerous. To guard against these problems, be sure your loved one keeps an updated list of all the medications he/she takes, including over-the-counter drugs and supplements, and reviews it regularly with the doctor. Take advantage of CardioSmart tools.

  • Track and get help managing medical bills. Many heart-related conditions require ongoing medical visits, imaging or blood tests, procedures and, in some cases, rehabilitation. That means a stack of bills, explanations of benefit and other paperwork. It can be difficult to stay organized or even understand what these statements mean. Many caregivers say this is the hardest part of dealing with a chronic condition. If you have questions or feel overwhelmed, talk to the doctor’s or hospital's billing department. You might also consider asking your insurance company to provide a case worker who can help.

    Stay organized by helping to:

    • File a copy of all insurance claims and bills from the doctor’s office, lab work or hospital visits
    • Save receipts for deductibles, co-pays and other health-related expenses
    • Make sure the name of the doctor, services provided and dates are correctly noted on the claims

    If the insurance company denies a claim, consider appealing it. Be sure to keep a record of everything, including emails and phone calls with the insurance company. You might want to start by finding out whether the doctor’s office billed the claim correctly.

  • Make use of assistance programs and referral services. There are programs that may help cut medication costs and also provide other services such as nutrition counseling, psychological support, etc.

  • Tap into patient advocates and navigators, if possiblePatient advocates and navigators are often found in medical centers and hospitals and can help guide you through various aspects of managing a chronic condition. They can also help answer questions and advocate on behalf of the patient and family.

  • Think ahead when traveling. Anytime someone travels with a chronic illness, it’s a good idea to check in with the doctor first. This is especially important if you are going abroad or plan to be away for an extended period of time. Ask whether you should pick up extra doses of medications or refills and how you can find good medical care at your destination. If you are traveling by plane, and the person you care for uses liquid medications or has, make sure to find out how to carry these onboard.

  • Keep heart healthy snacks and recipes on hand. There are lots of cookbooks and recipes available to make heart healthy meals. You can also find more information about healthy eating and how to cut out the fat while keeping flavor. Tell friends and family about special dietary considerations around the holidays or during visits.