Caregivers cannot be everywhere at once; they need to connect with advocates who can help them navigate the system. From helping manage the emotional side of aphasia to processing the available options, hospital case workers, social workers, and patient advocates all work to support the caregiver and person with aphasia.
Joe Biden talks about the importance of connecting with an advocate in his book, Promise Me, Dad, which is the latest installment of our online book club. We are focusing solely on the parts of the book that cover aphasia and caregiving.
Eyes and Ears
Biden couldn’t be at the hospital all the time, so he designated his son-in-law, Howard, and friend and physician to the Second Family, Doc O’Connor, “to be my eyes and ears at the hospital” (p. 167).
These advocates were especially powerful because they were doctors with knowledge of the hospital system. They could translate updates to the rest of the family and gain access to Beau during non-visiting hours. Biden described Howard’s ability to translate as one of his most valuable roles on page 170:
Howard was an incredible secret weapon for Beau, and something all families should have: a devoted patient advocate. He acted as a translator between the doctors, who tend to speak in almost incomprehensible professional jargon, and Beau, Hallie, Hunter, and the rest of our family. Howard also did what he could to cut through the knotty administrative issues all families must face. One of the biggest problems was simple communication and information sharing between hospitals.
Most people don’t have a “Howard” in their family. So what can the ordinary person do to ensure that they have someone on their team during and after the hospital?
Finding an Advocate
If you don’t have a doctor in the family, you can use the case workers, social workers, and patient advocates who work in the hospital to coordinate care during and after the hospital. They may not be able to sit in the patient’s room to keep them company and provide updates like Howard and Doc O’Connor, but they can help a caregiver navigate a complicated system. They are knowledgeable in the help that exists both inside the hospital and within the greater community, such as rehabilitation centers or speech therapists.
As WebMD points out, most hospitals employ only one or two advocates, so they need to help many patients at once. Your insurance company may have advocates on staff to help you navigate care and billing options; you just need to ask if this person exists. Moreover, people sometimes hire a private patient advocate, and the Patient Advocate Foundation may be able to help you locate and hire that person.
But the first step is seeing whether the hospital itself provides access to a social worker that can help you get your footing and know the right questions to ask in order to turn yourself — the caregiver — into the point person as well as looping in other people to be your eyes and ears on the ground.
Do you have advocates who help you navigate the system or keep you company?
This is the last installment of this book discussion. Stay tuned for a new book beginning in a few weeks.
Image: Ricardo Gomez Angel via Unsplash