In the initial entry, I was writing about one of the earliest FTD symptoms: the lack of apathy. There is no doubt that it is one of the saddest symptom, but to me the most important of the early symptoms is the "loss of executive function." When I tell people that, they usually look at me with a blank stare or ask me what the heck that is.
Executive functions are mental skills that allow you to plan, organize, prioritize, focus, solve problems. Another definition I have seen is that it is an umbrella term for the neurologically based skills involving mental control and self-regulation. My very much simplified explanation is that they are what you need in order to think or do more than one small task at a time.
An example, and one I had to do recently, was to schedule an airplane flight. You have to find out which airport is closest to where you need to be and which airline flies there. You have to check all the schedules to find one that gets you there when you need to be there. (Of course you first have to figure out the time.) You have to check to see who has the best fares. Are there baggage fees? Other fees? Then you have to cross reference all the answers in order to select the proper flight. Whew, that's done. Oh, wait! I have to figure out how to purchase the danged tickets. Then, it's time to select the seat you want. One more, you have to make sure you get a confirmation that the purchase actually went through. That one is truly learned from personal experience. Okay, now I'm done. Except I must make a note to print out my boarding pass before the actual flight.
I am exhausted just from remembering all that to relay the experience and recalling how exhausted I was after doing the task. Now, think about if, in the middle of doing this, someone pops their head into my room and asks me a question about something else? Not only can I not focus enough to understand what they are asking and certainly can't answer the question, but it sets me back several steps or I have to start all over again. I shouldn't even mention that I probably bit their head off for interupting.
Hopefully, now, you have a good understanding of just one of the symptoms that FTD brings with it. Now, think about how you can realize that someone has lost their executive functioning just by looking at them. Odds are pretty good that you cannot tell at all, unless you happen to interrupt them during the process and had your head bitten off.
This is one of the reason that people look at us and say "But you don't look like you have anything wrong with you." Many times, I am able to answer someone's question or even remember something that happened quite a while ago. Again, they look at me and say "See, I told you that you were fine."
On a personal note, my husband who has Alzheimer's Disease, is not very capable of being my caregiver any more. I am now trying my darnedest to be his. The other day, after an exasperating incident, I told him he was looking at me as though he did not believe there was anything wrong with me. He looked at me for a while then said "It doesn't seem like there is anything wrong with you." Fortunately I had nothing in my hands because I'm sure I would have thrown whatever it was. He was one of the first who had noticed, prior to diagnosis, that there was something wrong and had never questioned the diagnosis. He was also right there to help me do whatever I struggled with.
Later, thinking about the incident, I realized that, to him, it probably doesn't seem like there is anything wrong with me anymore. I can do things that he can no longer do. For instance, I have retaken control over our finances. I am paying the bills and all that good stuff. What he doesn't see is that I am scared to death that I am going to mess something up. He doesn't see how I sit at the desk and stare at the checkbook and try to remember how to do it. He can't know how I struggle every time over what year it is. I struggle greatly to make my writing legible. But, again, he does not see this, he only sees that I did it.
That is what happens with all the people who cannot believe there is anything wrong with me or others with FTD. They see what is on the surface. They see that I can do something but they cannot see how difficult and confusing it is. They cannot see how quickly I become exhausted from forcing my brain to do what it struggles to do.
I am proud of myself that I realized that this is what is happening with my husband. The worse his dementia gets, the less shocking mine is to him. I am also proud of myself that I was able to relate that to what others are seeing or not seeing in me that causes them to deny that I have FTD. It's not just that they never heard of it. After all, I can hand them a brochure that explains FTD. I have no brochure that explains how they have to look a little deeper to see that my brain is dying on the inside even though it may not show.
I will still get upset and angry when people question that I have dementia. I will still have to struggle to not scream at them and tell them how stupid they are. I will still have to struggle to remember to turn and walk away because they do not know any better. I will though, after I have walked away, be able to realize why. Perhaps they saw me do something that they do not know how to do or remember something they have forgotten that makes them doubt. After all, I just did something they can't. FTD is different. I don't totally understand it after all I have learned about it so I do understand that they don't either.
Hopefully, this blog entry will explain the loss of executive functioning a little better to the caregivers, family members and even some who have FTD. Please remember that when you look at someone with FTD who looks exhausted, after doing some "simple" task, truly is exhausted. Please remember, even the next day or two when they have no desire to do anything except nap, that it is quite possible it is because they strained their brain the day before. I actually use the terms "brain strain" or "brain drain" to explain what I am feeling. It kind of says it all if you listen properly.
Now, if you will read on just a bit more, I would like to just summarize what I was going to write about before the executive functioning jumped into my brain. (Yes, it is the loss of executive functioning that can cause my brain to jump all around and not focus on just one.) With the loss of apathy that we also develop early into the disease, some doubt that we can truly suffer from depression. I can give you a long list of those who do, right off the top of my head. To the doubters, I have two comments... First, can you tell me how someone can possibly have FTD and deal with life with FTD and not have at least some level of depression. The overwhelming frustration alone can trigger it. Second of all, to those who doubt... Hogwash!
See, sometimes things happen for a reason. An entire blog about whether we can suffer from depression would have probably angered more people than I ever care to.
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