Ask the Expert: Caregiver Action Network – Important Caregiving Tips and Resources

According to a 2013 PEW Research study, nearly 40% of adults self-identified as being a caregiver to a family member or loved one. Whether you are among this group today or might be down the road, there is a lot to know and learn about this important role.

Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age. John Schall, chief executive officer of Caregiver Action Network, is here to offer insights and answer questions on the topic of caregiving, which affects so many of us.

Q: What is the definition of “caregiver” you like to use?

Schall: The definition, and thus role, of a caregiver is pretty broad. That said, the definition we like to use is: an unpaid person who is providing medication or nutrition management, transportation assistance, supervision or monitoring to someone with a special need, chronic condition, disease or generally dealing with the frailties of older age. 

It is important to note a caregiver does not need to be a blood relative. In fact, many caregivers are neighbors or friends. 

Q: Is it possible to be a caregiver from afar? What are some examples of “remote caregiving?”

Schall: Not only is remote caregiving possible, it is the fastest growing segment of the caregiving population. As the working generation is becoming more likely to live in a different location from their parents, providing remote support is becoming a necessary and vital way to help take care of a loved one. 

Some common examples of remote caregiving include: looking after finances, finding paid care and providing emotional support. 

Aiding from afar can be beneficial as it gives you a fresh perspective on your loved one’s condition. In-person caregivers can sometimes miss physical or cognitive changes, as they see the individual more frequently.

Q: Once someone becomes a caregiver, what are some of the best first steps to take?

Schall: The first step will vary by situation, as sometimes the caregiving role can develop gradually – for example with a loved one battling a degenerative disease over many years; and at times it can happen quickly – such as following a fall or a sudden diagnosis. 

That said, there are some basic first steps that transcend specific situations every caregiver can take:

Create a patient file. Put together important documents, which might include:

  • Financial power of attorney.
  • Health care power of attorney. 
  • Health records. 
  • X-rays or other images. 
  • Journal or anecdotal notes from doctors’ appointments. 

Compile a medication list. While it may sound simple, a good medication list is not just the name of prescriptions and other meds. This list should include: 

  • Name of medication (and don’t forget over-the-counter meds). 
  • Use/intended use. Sometimes a doctor might prescribe a medication for “off-label use,” meaning the drug is taken for a condition outside of what it is directed to be used for. Make sure this is documented so other health care providers understand how it is being used. 
  • Color and size of pill. 

Learn how to ask for help. “Let me know how I can help” is a phrase many caregivers often hear. Instead of simply appreciating the willingness, think ahead about things on which you and your loved one could, indeed, use help. It might be as simple as coming over to mow the lawn or bringing a hot meal. 

Q: Is there new technology that can help caregivers?

Schall: New and exciting technology is finally coming to the caregiver world. Earlier this year, Caregiver Action Network and Backpack Health launched a free mobile app that makes it easy to manage and share important health information for a loved one.  

Through this app, caregivers pick and choose with whom to share health information – ranging from EMTs to doctors while traveling. You can even translate all stored information into other languages, should you or a loved one be traveling abroad. I strongly encourage everyone to check it out, as you never know when it might be helpful. 

Q: Caregivers often need their own support and self-care routines. What are some of the most important things caregivers should do to ensure they are taking care of themselves?

Schall: While taking time for yourself can be hard, it is vital to focus on your own wellbeing. Be sure to take a meaningful break; meaning, time where you can fully detach without being distracted by others’ needs. Maybe that means going to see a movie or out to dinner with a friend or partner. 

Caregivers are twice as likely to have high blood pressure or suffer from depression. So, make sure you are actively working your own medical check-ups into your schedule to stay on top of and address your own health needs. 

Remember, you must take care to give care. 

Q: What resources does Caregiver Action Network provide to caregivers?

Schall: A great place to start is with our 10 tips for family caregivers article. Be sure to click on the links for each tip, as they take you to helpful resources. 

Additionally, Caregiver Action Network just launched a caregiver help desk, a telephonic resource for caregivers to call and ask any question they might have. The help desk is staffed by trained health care professionals, equipped to answer your questions and point you in the direction of more resources. Call us at: 1-855-CARE-640.

Q: If you could share one piece of advice with new caregivers, what would it be? 

Schall: Don’t be too hard on yourself. Give yourself credit for doing one of the hardest jobs there is. You’re doing great! 

Editor’s Note: As part of National Medicare Education WeekOpens in a new tab, we asked leaders, like John, from organizations in the health and aging fields to share their expertise. Stay tuned for more Q&As on topics ranging from Medicare/Medicaid eligibility and how wearables are being used in health care. 

Also, be sure to check out the free National Medicare Education Week webinarsOpens in a new tab to learn even more from experts across fields.