(Editor’s note: This is the 14th in the Next Avenue “When Should You…” series on aging milestones for parents or loved ones. With our partners at the Benjamin Rose Institute on Aging, we address common caregiving concerns.)
If you have recently stepped into the caregiver role because of a significant change in the health of an aging parent, whether you realize it or not you have also become their health care advocate.
The responsibilities that come with being a health care advocate often start off small, but they may escalate over time.
“You are both on a continuum,” says Bert Rahl, a licensed independent social worker and director of mental health services at Benjamin Rose Institute on Aging. “It often goes from the person being able to manage with a little help, to needing more help, to not being able to manage at all on their own.”
Accept the fact that what’s concerning to you may not be what they are concerned about.
— Bert Rahl, licensed social worker
Knowledge Is Power
To be an effective advocate, it’s important to plan for the future with your parent, not for him or her. Conversations should cover your parent’s health care and end-of-life preferences, the names and contact information for all health care providers, primary and secondary insurance providers and related financial information.
They may also cover things like wills, trusts and other legal documents.
“The earlier you have these conversations, the better,” advises Rahl.
Make sure you (and your parent) understand what is covered by your mom’s or dad’s health insurance, Medicare and/or Medicaid. That way, if a discrepancy appears on a bill or statement, you will be more likely to notice it.
You also need to know about, understand and plan care for any chronic medical conditions your parent is dealing with.
Where to Find Answers
You can get that information from your his or her physician. Or you can go to general condition-specific websites, such as those provided by the National Institutes of Health and nonprofits such as the Alzheimer’s Association, the American Cancer Society and the American Diabetes Association. And if possible, you may want to get access to your parent’s electronic health and medical records.
The websites noted above provide general information on symptoms, treatment options, progression, community-based resources and other information. The medical records provide patient-specific information on diagnoses, tests, doctors’ and therapists’ notes, medications that have been prescribed, emergency contact information and other information that will help you advocate for your parent.
Preparing for Medical Appointments
Knowledge arms you to be the advocate you want to be at medical appointments.
Usually, being the adult child of a patient enables you to be in the exam room with your mother or father. To guarantee that, Rahl suggests you have your parent name you as durable power of attorney (POA) for health care. “When you have a POA,” he explains, “you have legal leverage.”
To ensure that every appointment is a success, be as well-prepared as you can. To do that:
- Use your eyes, ears and subtle questioning to find out what your parent’s health concerns are. And, stresses Rahl, “accept the fact that what’s concerning to you may not be what they are concerned about.”
- Make a written list of your parent’s, and your, concerns as those concerns arise. “Not just the day of the appointment,” says Rahl. “Keep a running list.”
- Prioritize the list. “Office visits are short, so focus on two or three things,” advises Rahl. “Discuss other concerns with members of the physician’s team — the nurse, the occupational therapist, the physical therapist and the pharmacist.”
- Bring a notebook and pen to the appointment, for taking notes and jotting down reminders. But don’t bring a tape recorder. “They often put health care providers on the defensive,” says Rahl.
- Periodically, bring all prescription medications, over-the-counter drugs, supplements and herbals your parent is taking with you to an appointment. That way, the physician can make sure all can be safely consumed. “If you can’t do that,” says Rahl, “then make sure you do it with the pharmacist where they get their prescriptions filled.”
- Bring information needed to update insurance, patient information or hospitalization forms and the contact information for any new health care practitioner(s).
And during the appointment, stick to the list.
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This article is reprinted with permission. © 2014 Benjamin Rose Institute in Aging. All Rights Reserved.