No Rhyme Nor Reason

Sometimes, there is no reason why a person with FTD does certain things. It is very difficult for that person to deal with the issues FTD brings. It is also difficult for the caregiver because they want a reason why it is happening. Some times, there is no reason... no rhyme nor reason.

The question "Why is s/he doing this behavior?" is one I frequently hear from caregivers. I wish there was a concrete answer. I can almost guarantee you that someone with FTD can not always answer the question either.  Some times the behavior is so frustrating to the caregiver that they become too frustrated themselves to deal with the situation calmly. Then it can become that vicious cycle of each person's frustration growing until it reaches a boiling point.

It can be little things. For instance, why do I need three pens next to me in the family room and at my computer as well? I actually do know the reason for it. I am most comfortable with one type of pen for making running lists, like the grocery list. I like another one for writing notes, signing birthday cards, etc. Then, I need a third type for doing my puzzles. Of course, there is also a highlighter and a mechanical pencil. I panic when I cannot find the proper one, sometimes until I am screaming, throwing things and accusing people of taking them from me. Does this particular intense need make sense to anyone else? Most likely not. Does the fact that I over react make sense? Of course not. 

Did you notice that I used the term "intense need" when describing the situation? That is what it is. There is no way anyone is going to convince me that I don't need them all. It is not simply a quirk or habit. Before FTD, I would just grab something out of the drawer and write with it. Even a crayon would do in a pinch. Now, I go into panic mode to the point that I exhaust myself.

Why does someone with FTD no longer want to leave the house, even to go to places that were their favorites before? There is, most likely, no way you will get a logical answer from the person with FTD. It could be fear of leaving somewhere comfortable. At home, you know where things are and, for the most part I hope, there are not judgmental people there to make them uncomfortable. To go out, you must deal with different noises, more people than you are used to, people who look at you trying to figure out "what your problem is" or a fear of acting inappropriately or getting lost. These are just a few possibilities.  Odds are fairly good that if you ask the person why they don't want to go, they won't be able to tell you.

Some days, I cannot find it in me to go out of the house and deal with people or circumstances. Other days, I will be in the house going stir crazy wanting to go somewhere or do something. It can be a difference in energy level. It can be that I did not sleep long enough, was awakened by too many dreams or nightmares or even that I slept too long. It can be that I did nothing but eat sweets the day before because the intense craving for sweets and carbs was that strong. It can be that I am depressed and frustrated from dealing with the symptoms FTD is blessing me with that particular day.  If you ask me why I don't want to go out, I most likely would not be able to give you an answer. I would probably yell at you that I just don't. I don't know myself so how can I explain it to anyone else?

Food choices can be another clashing point. "Why won't you eat this dinner I fixed, you loved it the last time?" Did I? Maybe I do not remember. Maybe my tastes have changes? I find that I usually have to over season food in order for it to have any taste to me. Other days, I don't want things seasoned. One day I will like a certain food, other days I detest it. Fortunately, I am still able to cook if I pay close attention and don't grab hot pans out of the oven without potholders or stick my finger in a pot to see if it is boiling yet. If I could not prepare my own foods, I can definitely see how this could become a major battle. I can understand it because I live it.

As I have mentioned many times now, my husband has Alzheimer's and I am struggling to be his caregiver. I can push myself to make something for dinner that I know he likes. Then, I will end up watching him re-season everything, spend enough time cutting everything up that I am nearly finished eating by time he starts and, the worst one, will scrape part of his dinner into the trash even though it used to be his favorite food. This is one time that the apathy brought on by FTD is helpful. I don't care if he likes it or not. It's what is for dinner and that's it. If I were to fight with him about it, it would certainly do no good. If I were to let it bother me and feel insulted like I would have before FTD, it would be a disastrous situation for both of us.

When a caregiver asks why their loved one is doing something or resisting something, they want to hear a concrete answer. The only answer is "Who knows?" We can guess what it is but, since the one with FTD doesn't even know, it really would be just a guess. The best thing to do is distract or to not try to explain things too well. Instead of asking "Do you want to go with me to the store?" say "Come on, time to go to the store." Don't discuss it with them repeatedly. It will just allow more frustration, anger and resistance to build.  

If you must take the person with FTD out somewhere and they are seeming apprehensive, frustrated or downright belligerent there are some things to try. Take along something they are familiar with, such as a blanket, for in the car.  Some have great success with weighted blankets. Try taking something along to keep their hands busy. This can be a great relief if they are feeling frustrated or apprehensive. You could try a squeeze ball, a fidget spinner, or just about anything that requires finger movement. It can be a great distraction tool as well as allowing them to release negative energy. Another suggestion I have heard is a memory book. You can put family pictures or pictures of places and things that they can relate to into a small, sturdy, photo album. Only give it to them in the car so it is a treat for them to look at. This one caught my attention when I heard about it because I used the same idea successfully with my toddler years ago. I would not have thought about it for using with FTD but can see how it might work. 

The bottom line is there are no absolute answers. Every case of FTD is different and they do not follow a particular pattern of what happens or when. Every person is different and reacts to things differently. All you can do is to try any ideas you can think of. Try not to argue, it will just escalate things. Try to not get so frustrated yourself that you can not deal with the situation calmly.  I do understand how difficult these two things can be but it's the most helpful thing you can do.

Above all, please, please, please try to understand that the things you feel are being done deliberately are most likely not.  Loss of executive functioning (the ability to plan and manage more than one thing at a time) is often one of the first abilities stolen by FTD. Speaking for myself, I am not capable of planning or implementing a plan to irritate my caregiver. "If I do this, it will really get to them." is not even possible for me. To even relate that the way my caregiver is reacting is due to what I have said or done, is not often within my abilities.

Again, no two cases of FTD are the same. I can sit here and write this blog every week and it comes out making at least a little sense. Others with FTD may not be able to, but there are a lot of things that they can do that I cannot. That is why I cannot give you concrete advice on how to deal with certain situations. Your situation isn't going to be exactly the same as anyone else's. All you can do is try to understand where their need is coming from and try to come up with things that might work. If it doesn't work, take a deep breath, count to ten, and try something else. If nothing works, whatever you do, please don't fall into the guilt trap that you must be doing something wrong because what isn't working today may just work tomorrow.