Why Do Doctors Not Understand?

 I know fully well how difficult it is to understand FTD, especially for those who have never heard of it before. I know I didn't understand it when I was first experiencing it.

What I don't understand is why many doctors do not understand it or assume that since they know about Alzheimer's they know about all dementias. Before I go to a new doctor, I ask if the doctor knows about FTD. My current family doctor assured me that she knew of it but admitted she didn't know a lot but was willing to learn. The first visit to her office was okay. Despite Covid, she allowed my daughter to go in with me which helped and she willingly sat and listened and took a lot of notes. 

At the end, since it was the first time we had met, she asked if she could schedule me for a revisit in three months. She also handed me new prescriptions for all my medications for issues other than FTD because I had recently moved from another state. She gave me a 3-month supply with a refill for another 3.

I returned for the 3-month revisit and we went over all my lab results and discussed a few things, again not related to FTD. We did not make a follow up appointment but were to do so in six months. Which, to me, meant six months after that visit and we made the appointment online after we got home.

Last week, I received a call from our pharmacy that she had refused to refill my prescriptions without seeing me first. This is why I ask why they do not understand. According to the way I looked at it, it had only been 3 months. I suspect it is not even her rule to be seen before refills. It is more likely that the health system she is part of is responsible for such rules

For those without FTD, or even any dementia at all, it is no big deal except, maybe, missing a couple hours of work. Maybe we would also spiff ourselves up a bit to look our most presentable. Not that simple anymore...

Now it means worrying about the appointment: how I would get there, if my daughter could miss half a day's work, and if I was going to have to explain everything all over again for a third time. When the date of the appointment arrives, I have probably forgotten about it. My daughter would remind me I am going that day and panic would set in.

For someone with FTD, it is all extremely stressful. I am going to need to shower which is stressful and exhausting in itself, pick out something other than flannel pants and a sweatshirt to wear and worry about the trip to her office which is in the city. Riding in traffic stresses me so much that by time we arrive, I am already a nervous wreck. 

The practice of this office is that they make the appointment but tell you that you must be there 15 minutes before the appointment time. All that happens when you get there is they ask if all my information is the same and, if I have a copay, I am to pay it then. I don't have one so that isn't even necessary. They stick a thermometer in front of my forehead and find I have no fever. Then I am told to have a seat. I am happy to take a seat as, by then, I am exhausted and it took one or two minutes, not 15.

Well after the appointment time (I understand how doctor's schedules work and if mine is always right on schedule I wonder if they truly take the necessary time for each patient or just end it when time is up.), I am taken back to an exam room and a medical assistant comes in and goes over my history, verifies all my meds and asks if I am having any new problems. By then, I am so exhausted and stressed that I don't even know if I gave the right answers. 

After another wait, the doctor finally enters and asks most of the same questions I was just asked. I am relieved that I am finally seeing the doctor but already so worn out that I cannot remember the answers. All I want to do is get out of there and get home.

It is both physical and mental exhaustion. I am beyond cranky and am probably irritating her. After all, she truly is there to try to help. I have to look to my daughter for every answer because I am either unsure of or don't remember anything. I am close to biting a hole in my tongue if she asks the same question again, even if it is because my answer was not very clear. I even get irritated if my daughter does not know the correct answer because then I have to come up with the proper words to correct her answer.

At this point, I just want to be at home, back in comfy clothes and probably curled up in a fetal position in bed. So she gets very brief answers at best which is not the ideal situation for a doctor to understand and help a patient. Usually, blood is drawn for some lab tests. These results will arrive later, via email, and I don't get to discuss them until the next visit. At least those are now going to my daughter so I do not accidentally delete the email... again.

It does not matter what time the appointment is, by time we do the return trip, I have nothing left. I am sure you understand that I am immediately back in my comfy clothes and into bed.

For those of you with FTD, I am sure you have experienced and understand this or a close variation. To those of you who are caregivers for someone with FTD, you are probably reliving the nightmare as well. You have the added pressure of trying to keep us calm enough to not create a scene. The others, especially those in the waiting room who have no clue that I have dementia, must think I am a royal you-know-what and are thanking their lucky stars they don't have to live with me. I don't blame them. I don't like myself much at this point either.

Is there a solution? Not that I know of. The situation can be improved a bit if everyone in the doctor's office understands FTD. The odds of that? Probably zero.

Would it help if this was a visit to a neurologist instead of my family doctor? I doubt it very much because most of them do not understand FTD either, much less their staff.

The only thing I can think of is to give a copy of this blog to my doctor. I don't know if she would read it. I DO know that I would most likely be searching for a new doctor. At this week's appointment, I am going to take my lap pad sized weighted blanket. Hopefully, it will help! Other than that, I am out of ideas.