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.

ANTICIPATORY GRIEF

I have decided to begin blogging again after a six month hiatus. I apologize for being gone for so long, but it was time I needed to regroup after my husband's death. I am now happily ensconced in a new home that I share with my daughter who is now my caregiver. I am greatly enjoying the much milder North Carolina winters compared to those in Pennsylvania.

Today, I saw the term "anticipatory grief" and in that particular usage, it confused me. I, of course, know the term and have read about it often. I looked up the definition and to summarize, it is when you or your loved one has a terminal disease and you are planning ahead for the death that you know is coming. It can happen to the one with the disease and/or their loved one.

This definition actually surprised and explained my confusion because I had always heard this term in relation to the caregivers. It is totally understandable in the role of a caregiver because they tend to be constantly exhausted, weary and missing the person their loved one used to be all while knowing (and anticipating) the death that is coming.

Because I had always heard of anticipatory grief in relation to the caregivers, I often wanted to scream out "What about us? We are in constant grief." I know I have been, even before my official diagnosis. My FTD is hereditary so I recognized I had it long before a doctor diagnosed it.

Knowing you are going to die is one thing. To paraphrase what was actually said recently to someone with FTD... we are all going to die sometime. And, yes, I am still appalled someone said that to her. The context was basically, stop complaining. 

Of course we, myself included, know life is not eternal and normally one doesn't focus on the fact we will die one day. Unless, of course, you know that you have a terminal disease that is constantly stealing abilities, both physical and mental. We know this will continue until we do die. We also know that our death will most likely be horrid. That definitely falls under anticipatory grief.

Anticipatory grief hits me every time a new symptom appears or one worsens enough that I notice it happening. It hits me every time I see a look of irritation on the face of a caregiver. It hits me every I am struggling to do a task that used to be second nature. 

An example of this occurred yesterday when I could not remember how to print a document I had just typed on this danged computer. I became so frustrated that I yelled, "I feel so stupid and useless!" My daughter, who is working from home, thought I was yelling because she couldn't help me right then and promised she would as soon as she could take a break. I yelled again, "I know you will, that doesn't matter. I just feel so stupid and useless!"

It wasn't only that I couldn't do it. Yes, that was a part of it but it was combined with the knowledge of what is to come. I know the ability to do what used to be simple things will continue to grow. Had she not been here, the printer would be toast. I would have thrown it to the floor or beat on it until it was totally broken and probably the computer as well.

When the solution was as simple as restarting my computer, you guessed it, I REALLY felt stupid and useless. I curled up on my bed and grieved. There is no other word for it. I grieved that my symptoms will continue to worsen until I am 100% dependent. I should be caring for her, not the other way around.

She would have told me to stop if she knew what I was feeling. She does know what to expect because she watched me caring for my mom and aunt until their passing. What I know, however, is that she will still be working full time long after I die. I was working part time or not working at all when I did it.

This was a great example of anticipatory grief from both sides. She grieves because she knows I will continue to worsen and need more of her care. She is also fully aware that she will no longer have me to depend on. I grieve because I know how horrible my future will most likely be and because I know what I will put her through.

This whole incident happened just a couple days after an incident when I was unable to breathe. I had swallowed a large pill but didn't realize it was still stuck in my throat. Most people would have realized that and taken another drink but, no, I took two more smaller pills that just added to the blockage and I could not breathe at all. We were both thankful that she was here, working from home, knowing I very well could have died. Seeing the fear on her face is something I never want to experience again. Yes, more grieving.

I apologize that my return to blogging was not an uplifting one. When I blog, I sit at the computer and somehow whatever is on my mind comes out. Hopefully, the next time, happy things come out!