Caregivers are care coordinators

Managing a loved one’s care is one of the most common challenges I hear caregivers speak about; navigating the health care system and staying on top of all the various tasks can seem daunting and overwhelming at times.

It’s easy to quickly feel lost, especially if it’s a new situation or condition you haven’t dealt with before.

Caregivers often find themselves as the care coordinators for their loved ones. Their roles include scheduling medical appointments, managing medications, communicating with providers and ensuring that their loved ones are following their treatment plan.

It’s a lot to manage, especially when combined with all the other tasks caregivers are responsible for.

Here are some tips that can help caregivers in their role as care coordinators. These tips focus on communicating with health care providers, which results in better care for your loved one and creates a greater sense of control for the caregiver.

No. 1, prepare for the health care visit.

Start off by speaking to your loved one about the upcoming appointment and gauge his/her understanding about what the appointment is about. Ask what is important for him/her to talk about and discuss any changes you have noticed since the last visit.

For the care receivers that still have the cognitive ability to participate and make their own health care decisions, it is important to ask how they prefer you to be involved.

Make a list of questions and points that you would like the health care team to be aware of and take this list with you to the appointment. Prioritize the list so you are sure to mention the most important issues in case time runs short.

Make a list of medications your loved one is taking. This is especially important if your loved one receives medications from multiple providers and specialists. It is also important to include over-the-counter medications, vitamins and supplements in this list. Also, make note of any side effects or positive impacts on symptoms medications have had.

Encourage you loved one to take the lead in the appointment if they are able. Often, providers prefer to hear from the patient.

As a caregiver, you can help your loved one feel comfortable by being supportive and encouraging. Also, let him/her know you will fill in any gaps that are missed.

No. 2, during the clinic visit be sure to use your list.

You can share it with the health care team at the beginning of the visit to let them know these are the issues you would like addressed.

Take notes during the appointment. It helps in processing information and can help you retain what you hear. It also helps you identify questions and areas in which you need more information.

The clinic visit is a good time to let the health care team know if there are areas of your loved one’s care that you are struggling with or need support or resources for. If you don’t bring it up, the health care team may assume you are managing OK.

At the end of the visit, ask for a summary of what was discussed and what is being done. Get clarification on medication changes, anticipated timelines for medications to be effective and if specialty consults were made.

No. 3, after the appointment, check in with your loved one to get his/her feelings on how the appointment went and see if there are any questions.

This is a good time to help your loved one process what was discussed.

Reach out to the health care team if you are unclear about the treatment plan or instructions.

At the VA, MyHealtheVet is an online personal health care record system that has a useful tool (called Secure Messaging) to communicate with the health care team. Other health care systems have similar electronic-based communication modalities.

Ask the pharmacist about medications, side effects and concerns about interactions. This is their area of expertise, and they are a great resource.

Follow-up with the health care team if your loved one does not improve or gets worse. It is better to reach out for help than to worry and feel uncertain about what to do.

Most importantly, trust your instincts when it comes to your loved one’s care.

As caregivers, you know more than anybody what’s working, what’s not working, and if there have been any changes in your loved one’s condition. You are the subject matter expert when it comes to your loved one.

Thank you, caregivers, for all you do!

Jessi Houchins is a licensed clinical social worker and coordinator with the John J. Pershing VA Medical Center Caregiver Support Program.