The understanding of a caregiver and healthcare advocate for my mom.

I have been involved in one way or another in the insurance business for a long time. I run a small insurance brokerage which primarily caters to my family and friends of friends. In that role, we perform a needs assessment with prospective clients’ & family members to understand what keeps them up at night to help them build a tailor fitted protection plan for their families.

As part of that process I get a good sense of one’s financial obligations, specific cultural and family values that need to be factored and a general indication of their health status.

However, in the most recent year, I have been unexpectedly thrust into (and gladly accepted) the role of caregiver and health care advocate for my mom. As her dementia is quite severe and had been getting worse until recently. That combined with a series of strokes she experienced earlier this year, has left her unable to retain her independence and live by herself.

As such, I’ve had to understand the inner workings of aspects of the insurance industry that apply to older people that I was quite unfamiliar with.

One of the most poignant observations while on this journey for my mom’s complete recovery became clear to me about two weeks ago when we met with mom’s neurologist for the first time after 7 months of trying to get a visit. The reason it’s taken so long for my mom to see the neurologist is because there is a 4 month lead time with appointments and we missed the first one following her stroke in march which was initially set for June. However, due to work situations back home (in PA). Hence, the rescheduled appointment 4 months later which was about 2 weeks ago.

Before I describe that visit, I need to explain what my typical doctor visits have like going back to eight months which I have been the primary contact for my mom’s health and medical care needs. My mom sees her primary care once a month when vitals are trending in the right direction. She also sees the following the specialists; pediatrist, cardiologis, endocrinologist, optometrist, dentis and of course lastly but not least, her neuroligist which we got to me for the first time and is the subject of this article. There are different appoint schedules for each doctor, we meet some monthly others every other month and some as infrequent as once every three months. We were seeing many of these doctors the weeks and months immediately following the stroke episodes my which landed my mom in ER and ICU multiple times earlier this year. But, as her conditions have improved (and it’s my most important job right now) and continue to do so, the visits have been scheduled further apart allowing for some normalcy with respect to my work schedule and other life commitments that are not mom related.

The healthcare professionals I’ve encountered have been a mixed bag of mostly kind, genuinely caring, but hugely overworked and underappreciated group of professionals. This accounts for >95% of my encounters with healthcare workers most recently. The remaining <5% for one reason or another, I felt did not have my mother’s recovery set as their end goal, but motivated by something other.

Addutionally, from a technology point of view, many of these healthcare institutions (NGOs, insurance companies, government forms and processes) still require the use of fax machines and mostly operate on 1990s tech. Healthcare workers are graded regularly, but not so much on the quality of the healthcare they provide to their patients, but how well they follow the rules that have been established by whichever governance body regulates the important incentives that drive the actions. If you know anyone working in the healthcare industry, you are able to easily follow the incentives, it doesn’t take much clicking and googling to see that it’s usually big pharma at the tail end of their incentive structures.

It’s my opinion most (>95%) of the people in healthcare want to and believe they are doing the right thing. However, they are so overwhelmed, they sometimes don’t see the irony in their recommendations (a topic for another essay) or behavior that often leaves me baffled and wondering (out loud sometimes) “did they just really say that”. With that said, it is of this 95% I speak of in this article, the genuinely caring but overworked and under appreciated healthcare providers. From the physician’s assistants, to the doctors, specialists, nurses and so on.

How the visits typically play out.

• We’re waiting for an hour or more to be seen (even with an appointment on the books).
• Eventually, someone will come out to the waiting area to call my mom’s name and from there we are escorted to a private observation room. In the observation room we’ll sit and wait some more, sometimes just a few minutes other times longer.
• After a few minutes, if we are lucky, someone else (presumably a nurse or PA) comes in to ask a few questions, checks mom’s vitals and make a few notes in her chart/records.
• Sometimes moments “lay - tor” [spoken in a thick french accent] the actual doctor comes in. Other times we may be waiting an additional 30 minutes or more in the observation room.
• The actual time spent with the doctor once they meet us in the observation room is usually 5-10 minutes depending on the office, then we are off to scheduling and referrals to get future appointments scheduled and on the books.

The whole doctor experience typically varies between 2-3 hours depending on which doctors office or sometimes which way the wind happens to be blowing on any paticular day.To be on the safe side and a painful lesson I learned very early on was to budget each of these appointments for 3 hours. Anything less leaves my schedule vulnerable to being thrown off in very disruptive ways.

Getting back to the point of this essay, mom’s neurologist.

We were waiting in the observation room by ourselves for what seemed to be over 20 minutes, so I decided to quickly run out to check on my dog Wiggles. Wiggles had been out in the car making sure the AC was working for about an hour and a half at that point. So, I ran out to let her briefly roam around and stretch her legs.

And of course, as one would expect, the neurologist showed up while I was outside with Wiggles. She entered the observation room to find my mom, by herself (and nonverbal). The doctor was somewhat confused and was looking around for someone to ask about my mom and get a sense of what she was supposed to be doing to/with her.

Returning back to the observation room in time to see the neuro with a crayon and scratch pad in hand attempting to hand it over to my mom in hopes she would be able to say/explain herself in writing. It was more funny than anything. You have to know my mom to understand her attitude about a lot of what is going on around her. As my mom watched the neuro with crayon and paper in hand, she was likely thinking aomething like “I am old, retired, I only have to do things I want to do, and pen and paper sounds an awful lot like work. So, you can keep it and I’ll wait for my son to return”, [turns head away and stares at the wall].

Some additional context about this doctor’s office. I would consider it one of the larger medical centers in the area, highly recommended, this is a very busy office with many employees hurriedly bustling about the hallways and bouncing from one observation room to another.

Back to the observation room.

The neuro was likely alone with mom for just a moment before I returned from the doggy-car-check.

I expected this doctor visit to be very much like all other past appointments in that I was going to get 2 minutes with the doctor and she would be off seconds later to the next patient and observation room.

But that was not all the case. The neurologist engaged with my mom for 15-20 minutes, without and prior to barely acknowledging I was even in the room. This is likely procedural, their way of making sure my mom is not a victim or being abused in some form. This was unusual, but oddly appreciated. Most importantly my mom’s neurologist educated me on a few things regarding my mom’s health and spent almost an hour with us altogether. My mom’s neuro got more context around my mom and her lifestyle leading to this delicate state in her health. More than any other doctor my mom had been seeing. Most importantly, I have been trying to get my mom started with physical therapy for 7 months. As a result of the strokes, she was left paralyzed on the right side of her body and non-verbal.

Mom’s neuro made it happen within a week and to top it off, she set mom up for the in-home therapy.

This is a significant relief, as I primarily work from home, and having the speech, occupational, and physical therapists visit us rather than us having to travel to appointments and lose hours of the day. Simply put, this arrangement alleviates a tremendous amount of financial strain on us. My work, which requires a minimum of 20-30 hours to effectively tend to my clients and business, will not suffer due to these appointments.

I can tell the neuro was slightly impressed or entertained (hard to tell the difference sometimes) that I understood what my mom was expressing. Observing my mom and I interact as an outsider does look weird to people when in public and add to that visual, a cane corso usually in a sit position right beside us. Self-admittedly, even funnier when she is scolding me about something I am doing or asking her to do.

I digress!

At the end of mom’s neuro visit, the doctor gave us her office and personal information so that I may contact her day/night/weekend for anything “you don’t have to wait for business hours if you have any questions or need anything”, she says. While I have not tested those numbers to confirm their validity, I do believe she was being genuine in her gesture.

In conclusion, and all that to say, It was overall the best doctor visit I’ve had with respect to this situation I find myself in with my mom. I should also ad that for the 2-3 week period last March in which mom was being shuffled repeatedly back and forth between ICU and ER, the healthcare professionals at West Side Regional were AMAZING. Our experience at West Side Regional proves quality service can be delivered, the question is how can other healthcare institutions replicate that experience for their patients and family members.

Don’t get me wrong, all the other doctors and healthcare workers all mean well. But the bandwidth required for them to deliver a more personable experience is simply not there. As such, this is not a judgment on all the beautiful and caring people that have cared for my mom and countless others in the past and into the future. These are just the facts from these boots on the ground as I see it.

As for the brain damage to my mom’s left frontal lobe, it has diminished slightly and continues to shrink. But, there is no knowing at her age (86) how much self-repair we can expect or whether her speech will ever return. But my family and I are optimistic. As for mom’s speech or lack there of, a little peace and quiet never killed anyone. In the begining I viewed the nonverbal condition as the most important one that needed to be addressed. But over the months my opinion has changed on this. The vitals, mobility and mitigating the Alzheimer’s have become the more urgent conditions needing attention. In many ways, mom is actually lucky because I sometimes wish I didn’t have to speak. I miss those days often. But being in Florida, especially now, is more important, so we are good with what needs to be done for now.

As for mom’s neurologist, I will do something nice for her. The next appointment is in February, let’s hope I don’t have to use that private number before then.

Mom’s neuro might have the initials of KBMD, but that’s just a guess.