Unanswerable Questions

If you know me, you know I talk a lot. When I was a child, my mom said that if there was no one for me to talk to, I would probably talk to a brick wall. She was mostly right except that, instead of the brick wall, I it is more likely I would talk to myself.

Because of this, I was stunned twice this week when I was left with absolutely nothing to say.

The first was when someone asked on Facebook about what it physically felt like to have FTD. I can't remember ever thinking about that before. Sure, I often think and talk about the emotional, psychological and medical issues but physically, not so much.

Of course there are the usual physical issues like falling, tripping, loss of strength and energy, tremors and general lack of coordination, but those lead more to emotional and mental frustration, embarrassment and discomfort. .

There is pain involved when falling but, thinking about it, I kind of don't even focus on physical pain. Except for the FTD headaches...  there is no ignoring those. My answer to the question was something like, "Huh? I don't know!"  It hit me as strange. I know I do experience physical pain. When my muscles are weak, my arms and legs hurt if I push them to keep going. They will often feel heavy and uncomfortable but it is the mental frustration that comes to mind, not so much the physical discomfort.  

I am usually covered in bruises from bumping into things, like furniture, not only from falling. If I look at the bruises, I know they should hurt, but I don't feel it. I am guessing that the pain doesn't register with my brain. To further confuse things, there are times that someone will gently touch me and I feel it as horrible pain. I can grab a hot pan without a potholder, but don't touch me!

One day this week, my daughter came to my room because it was past the time I am usually up and about. She asked if I was okay. I answered that I didn't know, that I just felt like something was not right. She inventoried the possibilities and I just kept saying "I don't know." She encouraged me to get up and see how I was, which I did. It wasn't long until it was very apparent what the problem was and it related to scallops we had for dinner the night before. I won't go into the physical details, but there was no doubt that the scallops were off.

How could I have not known? My body had to be feeling at least discomfort and probably pain. Between this experience and drawing a blank when asked about physical feelings of FTD, it was an "Aha!" moment.  I still don't have an answer. Yet, when trying to think about it, all I come up with is examples of when I am physically worn out enough that I cannot keep going. I will go for days of simply existing from the lack of energy.

That would have to be my answer of how FTD physically feels, "Exhausting."  It is exhausting both physically and mentally which leads to a lot more emotional and mental issues that drag me down more than the physical.

The second question of the week was when I was getting my Covid vaccine. The nurse, after my daughter and I needed to explain my FTD due to some confusion I was experiencing, turned to me and asked, "So what do you do to keep busy?" What came to mind is that most days, just continuing to live is enough. Knowing she would not understand that, I said "I guess nothing."

She turned to my daughter who, fortunately, has a much quicker thinking process. Paraphrasing here, she kindly said that I still do pretty much everything that I used to, just not as well and much more slowly. She went on and explained how much of my energy goes into advocating for FTD and for those of us with FTD. God bless this daughter of mine! 

My reaction was, "Huh, yeah, that. I guess I do have things I still do." The truth is that I have so much frustration that I CAN'T do everything I used to be able to, I don't really stop to think of what I still CAN do.

So what does having FTD physically feel like to me? The answer would have to be it makes me feel totally exhausted because doing anything most often requires more energy and ability than FTD has left me with. When I get busy, I forget to take breaks, rest and drink water, which all add to feeling things physically. Everything else is frustration. Even when I experience pain or discomfort, the frustration that I do feel those is stronger than the actual physical feelings. How can I explain to anyone that FTD leaves me so physically and mentally exhausted that I am unable to know or  express how I "feel"? 

There are just things that FTD does not allow me to understand, feel or express.

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. 

Communication

When I resumed blogging last month, I vowed to myself that I would be more considerate of the feelings of caregivers. I am trying to always keep my caregiver experiences in mind. At times, though, it seems like I am picking on caregivers because they are the ones who are capable of change while the FTD'ers often are incapable of changing.

Communication is extremely important in any situation. With FTD, it becomes even more so. Talking to each other becomes a challenge for the one with FTD as well as the caregivers.

One of the biggest obstacles is that it is very difficult for someone who does not have FTD, even for the best and most experienced caregivers, to understand that while it quite often comes across as though we are ignoring you. Most often, it is quite the opposite. We do try to hear and understand what is being said to us but, as we all know, an FTD brain doesn't work in the same way as a healthy one.

The first issue is that our brains, as well as our bodies, often are slower to react to anything.

When someone talks to me, it takes at least a couple seconds to realize someone is talking, then a couple to realize they are talking to me. By then, the speaker is several words into what they want to say and those are the words that usually clue you into what the subject is.

So, by now, I am lost. I truly am attempting to hear and understand all the words but this is often difficult to do when you have already missed so much of it. I will give you an example: The other day my daughter said what I interpreted as "... ... blah, blah blah... the powder room still is really pink." Later, I remembered what she had said and went to look in the powder room because I did not remember putting any pink in there because it wouldn't go with my color scheme. I didn't see any pink. When I came out, I said "The paint in the powder room still makes it stink." She got upset and snapped "I just said that a few minutes ago!"

I quickly left the room, then returned and told her what my brain had heard. She looked at me dumbfounded but at least we had a good laugh.  

I had not ignored her at all, it was a perfect example of how to not communicate when FTD is involved.

The best way I have found, back when I was a caregiver and now with FTD, is to make sure the FTD'er is aware you are about to talk to them. The trick is to make sure they know you are about to say something. If you are nearby, a gentle touch and looking them in the eye is great. I find that if someone goes to the trouble of doing this, I know to pay attention. If this is not possible, it helps if you say a few words before you say anything on the subject. "I want/need to tell/ask you something," just a few words for their brain to kick into gear to give them the best chance of hearing you. Ideally, you could do both.

Another thing that helps is for the speaker to take a couple good breaths before speaking to ensure the tone of your voice can not be interpreted as hostile. Just the other day, someone told me how his caregiver had verbally attacked him. When he told me what was said and what had led up to it, it was easy to see how this could have been intended as a helpful conversation yet interpreted as a hostile one. I probably wouldn't be speaking in a pleasant tone either but if she had paused and breathed a couple times, she may have been able to control the tone of her voice. It may have kept things calm and not led to the hostile afternoon he described.

Volume and tone of voice make a huge difference and it would be ideal if both caregiver and FTD'er could control their own. Unfortunately, in real life, it often doesn't work that way. Often, I believe the caregivers, as well as family and friends, try to speak more loudly to me. They think that I am not hearing them and that if they speak louder, and often slower, my ears will hear them. If only it would be that easy.  Hearing aids are often of no help either because the issue is with the brain, not the ears. 

Communication is not limited to speaking. Gentle touches, even gentle hugs, communicate volumes. To me, they say, "Hey, I still care about you." Sometimes though, even if the hug is gentle, it can feel too confining. With me, hugs are not the way to apologize to me because I am probably still hurt and/or upset. But gentle hugs or touches are often the best way to say hello or I still love you or I'm sorry you were upset.

One more thing, listening is as big of a part of communication as speaking. There is nothing more upsetting to me than when someone finishes my sentence, thinking they know what I am going to say but that they can say it more quickly. That is often true and more often than not, the finish it correctly.  It can also be interpreted as "you are so stupid you can't even get the right words out."  You don't need to tell us that, we already often feel that way ourselves. Please believe me, it is horrible to feel that way. In fact, my daughter made it a rule that I can never say, "I hate myself" or "I am so stupid!" Instead, I say "I hate this disease!" It has helped because it reminds me that I am not stupid nor worthless. Simple things often do help.

Do I think it is possible in all circumstances to follow all these suggestions, especially when in a hurry or there is a concern? Absolutely not. Believe it or not, I yell sometimes and can not always follow my own suggestions. However, if you do these things most of the time, it won't be as frightening or depressing  to the FTD'er when there is yelling and frustration.