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2024-11-05 17:58:45The 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 where we both met her for the first time after 7 months of trying to get a visit. There is a 4 month lead time to get an appointment and we missed one in June (work emergencies 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 experience has been working with the 6+ different medical specialists and mom’s PCP has been like for me. The healthcare professionals I've encountered have been a mixed bag, of mostly kind, genuinely caring, overworked and underappreciated professionals. This accounts for >95% of my encounters with healthcare workers most recently. Many of these healthcare institutions still use fax machines and mostly operate on 1990s tech. Healthcare workers are graded regularly 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. If you know anyone that works in the healthcare industry and are able to 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 structure. It’s my subjective 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 say that”. With that said, it is of this 95% I speak of in this essay, 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 event from the time we walk into the office to departure is usually less than 2 hours. But, it’s OK if it ends up being a little longer as I always budget these appointments for 4 hours. Otherwise, the day’s schedule begins to fall apart, I miss meetings, calls and other demands on my time and stress ensues and I don’t like this type of stress. 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 a good 20 minutes, so I decided to quickly run out to the car and check on Wiggles. She had been out in the car making sure the AC was working for about an hour and a half at that point. Sure enough the neurologist showed up while I was away. 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. Arriving 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 “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. Some additional context about this doctor's office. I would consider it one of the larger ones 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 in the car check. I expected this doctor visit to be like the rest and that I was going to get maybe 2 minutes with this 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 a period, probably a good 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. But, 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. I can tell the neuro was slightly impressed or entertained (hard to tell the difference sometimes) that I understood what my mom was saying. 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 if any health concerns should arise.” 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. Don’t get me wrong, all the other doctors mean well. But the bandwidth simply isn’t 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. It’s not all permanently damaged. But, there is no knowing at her age (86) how much 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 many ways, mom is 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. 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. #BrainThings #LivingWithLala #caregiver #doctors #neurologist