FICKLE!

fickle

[ˈfik(ə)l]

ADJECTIVE

1. changing frequently

   synonyms:

   changeable · variable · volatile · mercurial · vacillating · fitful · irregular

I have often referred to FTD as being fickle. It is fickle in its choice of who to afflict... its vast array of possible symptoms... who gets what symptoms and in what order... the speed of progression... the ability of the patient and the caregiver to cope. I do not have to continue, you surely already know.

The problems of this are endless. Misdiagnosis often occurs because there is no list of signs and symptoms that physicians can refer to. It is common for family, friends and even the patients to refuse to accept the diagnosis because the one with FTD can seem normal in many ways. For instance, I am often asked, "How can you write a blog if you truly have FTD?" 

The symptoms of FTD can seem fickle in any one person. The symptoms can come and go. They can vary from day-to-day, hour-to-hour, even minute-to-minute. There are many variables that can cause these fluctuations, including stress, amount of sleep, amount of disturbances to environment, over-stimulation and nearly everything that may happen over hours, days, weeks or months. 

There are days when I appear somewhat normal, especially to those who do not know me well. If someone does not see me walk very often and, when they do, I seem to move along just fine and they then hear me say that I have difficulty walking, fall often and at times my right leg will drag, they tend to not believe me.

Yesterday, one of our cats stole a piece of food from me. This little rascal is so fast, he can hop up and grab something from my plate before my brain can recognize what is happening or what to do about it. Yes, most days I would have realized he had stolen it and known to catch him to take it away from him. At that moment, though, I froze and just looked between him and my daughter. She reacted and did what I should have done. However, I could not help but realize that she was upset with me. I had been suffering from a headache for three days. That left my reactions slower than normal and the connection between what I was seeing and my brain was just not in working order.

One day last week, I managed to cook dinner. It wasn't a complicated meal, but did require multiple tasks and multiple pans. By time the food was ready, I did not have enough strength left to dish up the food for me. I had to ask my daughter to dish it up. How do you explain that to someone? How do you explain that, on occasion, no matter how delicious the food looks and smells, you don't have enough energy to eat it?

When people tell me that I look wonderful and how I don't seem any different than I ever was, I wish they could see me when I cannot do things like figure out how to put a bra on because I cannot understand it is twisted. I knew something wasn't right but could not figure it out. I never did put it on that day. Good thing I was at home all day!

The bra incident reminded me of the time, years before she died due to her dementia, I realized my mom was showering with her bra on. I did finally realize that she was not taking it off because if she did, she would not be able to put it back on.

When a caregiver or anyone working with someone with FTD, it really helps if they are able to realize that symptoms can pop up anywhere, anytime. Just as an example, if someone with FTD is seen picking things out of soup they were given to eat, it is better to try to figure out what is happening rather than snapping "You know better, use your spoon!" Are they having trouble with their hand shaking enough that it is spilling? Do they recognize they have a spoon to use?

I am not being flippant here. Yes, those of us with FTD can be looking right at an object and not see it. The eyes are seeing it, but the brain isn't. By the way, if they are struggling with using a spoon, sometimes a weighted spoon will help reduce the shaking that may be causing the problem. I bought mine online.

Those with FTD often still have the ability to pick up on tone of voice and mannerisms. After experiencing this enough times, it is easy for us to give up. We believe that no matter how hard we try, we will still be disappointing the caregivers and family members. There is also the risk of us actually believing that we are stupid and/or worthless and giving up.

Since moving in with my daughter, she has implemented a rule that I am not allowed to say "I am stupid" or "I am worthless". When I am feeling like that, I am only allowed to say, "I hate this disease!"  There is usually an adjective in there describing the disease that I will abbreviate as "F...ng". 

That is just a small thing, not always easy to adhere to, but it does keep things in perspective. I am still worthwhile even if I have this f...ng disease! This is a good premise for everyone dealing with FTD... FTD'er, caregiver, family member or friends... everyone!

There can be no perfect caregiver, but my daughter comes pretty darned close. If she, at times, gets frustrated at my limitations, it is totally understandable. No one dealing with FTD, whether the one with FTD, caregivers, family or friends, can possibly be perfect. Just as FTD is fickle and unpredictable, all human beings are as well.