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Written by Christopher Plein, Ph.D. West Virginia University and OneOp Military Caregiving Team Member

I have buried in my drawer an old spiral notebook filled with copious notes from the winter of 2011.  In February of that year an older family member underwent a very complex surgical procedure.  It was a touch and go process – a time of intense concern, worries, and uncertainty.  The surgical procedure required many steps and the recovery process was long and protracted, requiring the input and care of different specialists and providers.  The notebook is filled with notes about the recovery process jotted down as one specialist, then another specialist, and then yet another explained what they were specifically doing.  I realized that as I filled the lined sheets of paper, that I was essentially mapping my family member’s recovery and serving as a check hoping to make sure that the dots were being connected.  This information was important to me as I communicated with various doctors, nurses, and therapists.  It was also important in communicating and comparing notes with other family members involved in caregiving.  Very importantly, it was crucial in communicating with my loved one who was the patient.  My voice was a familiar one, one that she trusted, and one that could help explain what was happening.

Caregivers often must act as “information central” for their families, friends, and those for whom they are providing care.  The delivery of healthcare and ancillary services is complex and often fragmented. This is especially true when the care is to be delivered over a long period of time and by many different providers. The caregiver can help to connect the dots — providing another resource in the effort to provide coordinated and effective care.   Those who study caregiving recognize the importance of keeping records and notes.  In my case, I jotted down quick notes about the specific post-operative conditions and side effects that were being experienced.  I was certain to document which doctor or health provider said what, why, and when.  When uncertain, I took time to clarify what the professional was saying. I circled back with other family caregivers to compare notes and to make certain that we were on the right page.  I would add their notes to my notebook as needed.  I also kept a log of communications with those who were concerned about my family.  These friends and contacts cared deeply and were a resource to draw on in case assistance was needed.  Many caregiving experts and specialists suggest taking notes to keep track, coordinate, and advocate. A quick review of the web will find plenty of helpful guides on how to do so.  One particularly helpful resource is found at Better Health While Aging.

OneOp has various resources that can help caregivers develop skills and adopt tools that can help them better connect the dots.  The MFLN’s military caregiving team provides a short video on “Military Caregiving 101” which provides some good points on keeping notes and records when interacting with healthcare professionals and others.  In September 2016, the OneOp family development team offered a session on Communicating Family Needs through Advocacy.  While specifically focusing on education and mental health services, the lessons are broadly applicable. Among other things, the session stresses the importance of documentation and record-keeping in helping to advocate for the needs of others.  It also provides some helpful guidance on how to get professional providers to translate complex terms and themes into more understandable language.

As Elisabeth Rosenthal has so eloquently and starkly pointed out in her best seller, An American Sickness: How Healthcare Became Big Business and How You Can Take It Back (Penguin, 2017), healthcare delivery is becoming even more fragmented.  The Affordable Care Act has done little to address the situation.  As Rosenthal stresses, patients and caregivers must take charge in coordinating care. This means making sure that the dots are being connected, whether it involves treatments, billing, or referral to services. Because the system is so fragmented, we as individuals –whether we are patients or caregivers – must assume the need to gather information, communicate when needed, and advocate when necessary.  I highly recommend this book – it offers some practical advice and checklists to consider when trying to coordinate effective care.  The book can be found easily through online and onsite booksellers.   You can listen to an informative interview with Dr. Rosenthal with National Public Radio’s Terry Gross by clicking on the following link at NPR’s “Fresh Air” .

As the old saying goes, knowledge is power – but just as importantly knowledge can be comfort and reassurance.  Looking at that old spiral notebook reminds me of this.

 This MFLN-Military Caregiving concentration blog post was published on May 26, 2017.