Helping an ill loved one navigate the healthcare system can be challenging—here's how to balance it all.
It's estimated that more than 44 million Americans help care for family members with illnesses or chronic diseases. The majority of those caregivers are adult children caring for aging parents. And since most of these adult children have jobs and children of their own, balancing work and home responsibilities with caring for a loved one often puts enormous pressure on them.
Also, consider the fact that older people with multiple chronic conditions may see an average of eight to 14 separate doctors, which results in an average of 15 to 37 doctors' visits a year. Then add all the tests, treatments, and medications involved in managing chronic conditions. For the caregiver, keeping track of it all can be very overwhelming.
But coordinating all that care can also be one of the best things you can do for your loved one. By doing so, you can help avoid medication errors and harmful medication interactions, duplicate tests, and unnecessary doctors' visits. You can also help ensure that your loved one is getting the most appropriate care. And you don't need an M.D. degree to do it—you just need basic organizational tools and information.
Get organized
If your loved one has complex medical issues, keeping track of all the tests, diagnoses, treatments, and medications can help doctors avoid ordering duplicate tests or prescribing medication that could cause a harmful drug interaction.
Donna Schempp, Program Director for the Family Caregiver Alliance in San Francisco, California, advocates using some kind of organizer. "It doesn't matter what kind of organizer, just that you use one," she says. You can make your own system with a three-ring binder, or you can buy an electronic or paper-based system specifically designed for medical records. Choose what you're most comfortable with, and what makes the most sense for your situation.
For example, if you're the primary caregiver and you usually go to medical appointments, a paper-based system may be easier because you can pick it up and bring it with you. However, if you share caregiving responsibilities with several relatives or you don't live near your loved one, an electronic record may be more convenient—you can easily send updates to other caregivers via e-mail.
No matter what your organizer looks like, it should contain:- Names and phone numbers of all doctors
- Dates of doctors' appointments and any relevant notes
- A list of medications, including over-the-counter drugs and vitamins
- Test and screening results
- Dates of immunizations, such as flu shots and pneumonia vaccine
- Other important information, such as allergies
Have a primary care physician
Your loved one may have been seeing the same doctor for years, but if not, it's important to find and establish a relationship with a primary care physician. Everyone needs a primary care physician, especially someone with more than one chronic illness. Keep the doctor informed, especially if a hospitalization or emergency room visit happens when the primary care doctor is not personally involved. A primary care physician can help explain things and will take a "whole person" approach, maximizing overall well-being rather than focusing on just one condition. A primary care physician can also recommend specialists when necessary.
Be prepared for medical appointments
Good communication can also help doctors provide the best, most informed care. Sometimes speaking up can be intimidating, though, especially when your loved one's medical issues are complex and emotions are involved. Schempp offers these tips to help you feel comfortable asking questions and providing information to your loved one's doctors:
Establish relationships. By doing this, your loved one's doctors will know you'll be involved in the care. However, it's very helpful if the doctor can deal with the same person and not multiple family members.
Do your research. Understanding your loved one's illness will help you know which questions to ask and what information to give the doctors. (Just be aware that not all medical information available online is accurate, so look for reputable sources such as nonprofit organizations and government sites.)
Prepare for medical appointments. Write a list of all the health issues and questions you want to discuss. It's a good idea to prioritize the list, because you want to ask your most important questions first. In addition to your questions, bring a current medication list to every appointment and show it to the doctor.
Tell the doctor about function and mood. The doctor can follow examination and test findings, but honest information about what a person can and cannot do needs to be supplied by the patient or family. If your loved one can't do things he or she used to be able to do, it may be a specific warning sign to the doctor about how serious the illness or condition is.
Doing research and making a list of questions or issues will help you feel more comfortable. But be careful how you approach the doctor. "Don't try to practice medicine without a license," says Schempp. Doctors are happy to answer questions, but they may not respond so well if you try to tell them what to do. Schempp suggests saying, "Here's what I found in my research. Is this right?"
Keep an open mind
You may not always like your loved one's doctors, but you may not have a choice. For example, if you're caring for a parent who has been seeing the same doctor for many years, your parent may be satisfied with the doctor and not want to leave him or her. Go slowly in establishing a relationship with this doctor, and try not to take over.
On the other hand, don't be afraid to step in if you think your loved one is not getting good care. Doctors shouldn't dismiss or ignore problems that are real. And if what the doctor says seems very different from any research you may have done, ask for an explanation, and if necessary, get a second opinion.
Understand the legal issues
There are laws in place to protect people's privacy and personal wishes when it comes to healthcare. It's good to have a basic understanding of what you can and cannot do when handling an adult family member's care.
"Everyone should have an advance directive," says Schempp. An advance directive is a legal document in which a person can write down their wishes about their healthcare, in case they ever become unable to make decisions on their own. Examples of advance directives include a "living will" and a "durable power of attorney for healthcare." You can talk to your loved one's doctor or a lawyer about creating an advance directive, or you can get a form from your state's health department.
Keep in mind that by law, doctors can't talk to you about your loved one's medical care without their permission. If you're present at a medical appointment, your loved one can ask the doctor to record permission right into the medical chart.
If your loved one doesn't want you to be at medical appointments or doesn't want his or her doctors to discuss care with you, then you can still get important information to the doctor by sending a letter, fax, or e-mail. It's best to provide information in writing.
