First, a bit of background…
In last month’s newsletter, I discussed how Jack Jones noticed his dad, Bill, was experiencing some memory issues. Jack did all the right things.
First, by discussing the situation with his parents and gaining their trust and buy-in as a result. Second, by setting upon a path of evaluation, with assistance from an astute primary care physician, Dr. Jay.
Dr. Jay did her part in getting the process off to a strong start. Unfortunately, subsequent appointments fell through the cracks, thanks to a combination of unresponsive providers and numerous administrative and insurance-related barriers.
The fact is, had Jack not monitored every appointment diligently and been as assertive as he was, a process that began in mid-May would not be as far along as it is now, four months later. (And even that time frame is much longer than I would hope for.)
With that in mind, here are five recommendations, should you also find yourself acting as the Care Partner for a loved one:
Recommendation #1: Don’t count on the system to follow-up
When Jack and his parents left the appointment with Dr. Jay, a plan was in place for the following:
- Blood work. This was easy. Bill could go to the lab at his convenience and this was completed within two days.
- MRI. Pre-approval from the insurance company was required. Several days passed and it wasn’t until Jack followed up that this appointment was scheduled two weeks later.
- A meeting with a neuropsychologist. After receiving no return calls as promised (despite sending three emails and leaving three phone messages), Jack abandoned the provider Dr. Jay had suggested and sought the services of another. More calls and additional referral paperwork were required. The two appointments needed to complete the testing and review the results took three months to complete.
- A meeting with the Center for Memory Health. Although this center was responsive and assisted with all the coordination, Jack spent hours helping his dad complete numerous rounds of paperwork (much of which was redundant) and gather all appropriate records and test results. This evaluation occurred >3½ months after Bill’s initial appointment with Dr. Jay.
- An Overnight Sleep Study. This required both pre-approval and, because Bill is a permanent resident of Arizona but a summer resident of Massachusetts, three additional phone calls to sort out coverage. Specifically, Jack need to ensure that the study would be covered at In-Network rates by Bill’s Medicare Advantage Plan. Despite Jack’s ongoing efforts, this process is still not complete four months later.
Recommendation #2: Providers are concerned with insurance coverage; you must be too
Initially, Jack was not familiar with Medicare and, in particular, how the Medicare Advantage Plan his dad was enrolled in actually works. Choice is limited and one must live within the confines of an approved provider network. Further, the requirements for referrals, pre-approvals and documentation have major implications, all of which can result in scheduling delays.
Dr. Jay and her office staff were helpful, but Jack needed to stay on top of things as well. He was tenacious about documenting calls made, who he spoke with and what outcomes were agreed upon. He often received conflicting information that needed sorting.
Recommendation #3: Take appointment preparation seriously
As Jack assisted Bill with preparing for each appointment, he realized that the efforts required were beyond Bill’s abilities to process and execute. After all, cognitive issues were at the root of all the testing and evaluations.
To ensure that appointments were productive and to prevent the need for any repeat testing or rescheduling, Jack…
…made sure that all providers had his complete contact information. He made himself the first point of contact for Bill.
…helped his parents complete all required paperwork. Often, he attached the tools he had prepared years earlier, including a Medication List and a list of Medical Conditions, surgeries and Hospitalizations.
…called a few days before each appointment to ensure that all medical records were on hand and all insurance requirements were met.
Recommendation #4: Debrief orally and in writing
For both his parents, Jack found it necessary to explain (sometimes several times) why all the appointments were necessary. Here are some of the things he found himself saying:
We are evaluating dad’s memory issues.
This appointment is to assess sleep, as that can impact memory.
This appointment is for your brain, to see how each part of it is working.
This appointment is with the neurologist. She is the specialist on your team who will make future recommendations for memory issues.
Following each appointment, Jack and his parents would debrief, validating what each of them heard about the issue. They would review next steps and add future appointments to a shared calendar.
Jack summarized these meetings in writing and gave the written summary to his parents to read and reference later on, at their own pace.
Recommendation #5: Care for yourself too!
As their son, Jack did a lot of worrying about a wide range of things related to his dad’s health. Fortunately, he now has the following things in place to help ease his concerns:
- Much more objective data and information about the situation
- A fabulous team of professionals working together on his dad’s behalf
- A team of providers in Arizona, with whom he can debrief before his dad’s return this winter
- Buy-in from his parents to do what’s needed going forward
Summary
Whew! As you can see, Care Partners serve a critical role in the lives of their loved ones. Not only must they be observant, they must act, over and over again, as issues arise.
Part of their role is to ensure that a plan is developed and executed for adequately diagnosing and treating medical conditions. A plan, by the way, that is sure to change as time passes.
Although it can be exhausting and disruptive to one’s life, it can also be rewarding. It provides ample opportunity for the demonstration of love and affection to those we care most about.