Often, long-distance caregivers want to help with their parent's medical care, but they don't know where to start.
Healthcare experts recommend that you start by learning as much as you can about your parent's illness, current treatments, and its likely course. This information will be essential as you help your parent and the primary caregiver cope with day-to-day concerns, make decisions, and plan for the future.
When you visit your parent, consider going along on a doctor's appointment (check that your parent does not mind having you there). Some long-distance caregivers say that making a separate appointment to communicate with a doctor allows them to seek more detailed information and answers to questions. These appointments must be paid for out-of-pocket.
You must have permission to have any conversation with your parent's doctor. Ask your parent to complete a HIPAA release form that allows the doctor to discuss his or her healthcare with you. Be sure the release is updated and that there's a copy in your parent's records in addition to keeping a back-up copy for your files.
Evaluating Health Information Online
On-line resources are available regardless of proximity to the care recipient, so it follows that many people search online to conveniently find information about medical concerns. But not all health information online is of equal quality. The following questions may help you decide if the information you find online is reliable:
- Who is responsible for the content?
- What are the author's credentials?
- Is the purpose and goal of the sponsoring organization clearly stated?
- Is the website supported by public funds or donations?
- Is advertising separate from content?
- Don't hesitate to tell a Dr. what you have found online. Ask- I found this information online, is it accurate?
Making the Most of a Visit with Your Parents' Doctor
If you go with your parent to see the doctor, here are a few tips that will help you be an ally and advocate:
- Bring a prioritized list of questions and take notes on what the doctor recommends. Both can be helpful later, either to give information to the primary caregiver, or to remind your parent what the doctor said about medication or about conditions.
- Before the appointment, ask your parent, the primary caregiver, and your siblings if they have any questions or concerns they would like you to bring up. Add it to your notes.
- Bring a list of ALL medications your parent is taking, both prescription and over-the-counter, and include dosage and schedule (if your parent sees several different doctors one may not necessarily know what another has prescribed). If your parent takes supplements, it is important the doctor know this as well. Note if you have any specific questions about medications.
- When the doctor asks a question, do not answer for your parent unless you have been asked to do so. Always talk to the doctor and to your parent.
- Respect your parent's privacy and leave the room when necessary.
Additionally, ask the doctor if she or he can recommend community resources that might be helpful. Larger medical practices and hospitals may have a social worker on staff. Ask to speak with the social worker. She or he may have valuable information about community resources that may fulfill needs now or as a parent needs them in the future.
National Institute on Aging (NIA), https://www.nia.nih.gov/health/getting-started-long-distance-caregiving