Let me start off by saying that I admire caregivers. It is not even close to being an easy task. It is frustrating, exhausting and depressing. Well, guess what? It is just as, if not more, frustrating, exhausting and depressing to the person with FTD.
I have been having a horrible week. To top it off, I keep seeing comments online, by a larger number of caregivers than usual, complaining about things they should already understand about FTD. As I said, the task is onerous, but there are general things all caregivers should be aware of.
First of all: We do NOT do these things deliberately!
We do not ignore you for the fun of it. Most likely, you are being ignored because you are not being heard or understood. An important thing to remember is something that I write about quite often. Please, one thing at a time! If I am trying to read the paper, watch television, tinkering with something or even just staring out in space, that is one thing. I include staring into space because usually when someone is doing that, they are thinking about something. When you start talking, it becomes two things and my brain can no longer focus on either one. If I actually hear the words you are saying, the odds are that they are that, just words jumbled together and not making any sense at all. I don't know about others with FTD, but when you add in another thing or try to talk to me, my brain becomes a black hole. It feels like it is a spinning wheel that cannot stop anywhere. It is necessary to ensure I am engaged with you before you start talking.
Someone with FTD may be tired or overwhelmed by things around us such as too much noise, too many or not enough lights or too much commotion. In that case, the brain is going to have difficulty engaging on anything. I may hear the words, but I may misunderstand some or twist some around. This can make a simple statement be one of total nonsense to my brain.
We may not be able to understand because there is too much content in what you are saying. If you tell me that you need me to go get the waste basket from my room empty it and take the trash out to the can, my brain is going to say a very loud "Huh? What did he just say?" Or I may remember to go get the waste basket from my room and have no recollection of any of the other task involved in your request. I might find something else in my room that needs tended to and forget about the waste basket. I remembered you told me to do something, it's just that my brain did not follow beyond the first step.
It comes down to that "one thing at a time." What you just asked me to do in this scenario was six or eight tasks. Go to my room. Find the waste basket. Bring it to the kitchen. Add it to the trash bag. Tie up the trash bag. Remember where the trash can is located. Go there. Open the can and put the trash in. I won't even count finding my way back to what I was doing beforehand. Before you say that I am being ridiculous, I am not. This is all about the "executive functioning" that we hear and read about with FTD. It is organizing our thoughts and actions in order to accomplish tasks, even simple ones.
Our brains no longer function the way they used to, they don't hear like they used to and they can't figure things out like they once did. Often times, words make no sense whether spoken or written. I still insist on reading the newspaper every morning. More and more often, I realize that I have read something backwards or with the words out of order. The English language is fascinating when you realize that, just by moving a couple words, you can change the entire meaning of what is being said or read. Just as this can occur when I am reading, it can also occur when someone is speaking to me.
When the caregiver gets frustrated when their loved one seems to ignore or misunderstand what they have told them, it doesn't help to say it louder and louder, eventually yelling it out. It's not that our ears are not hearing because of the volume. It is that our brains are having difficulty understanding what those words we heard are all about. This seems to get more difficult the louder it gets. What might help is to, calmly, repeat what you said in a slightly different way. Listen to what you are saying. Is it possibly there are too many small things involved when what you are saying is broken down?
Another useless tactic is to keep beating a dead horse. After a couple attempts, it may be time to realize it isn't going to work right now. Stop and decide how important it is. Must it be done right now or can it wait until later and try again after the loved one has rested their brain for a while. Stop and pay attention to the surroundings. How many people are around? Is the TV on or is their music playing? Are the pets running around? Are there distracting odors? The list of things that can overwhelm me to the point that I cannot understand is extremely lengthy. It is also not always something that I can figure out. Sometimes, I just have a generalized feeling of being overwhelmed.
When feeling overwhelmed, that is when I go to my quiet room. It is my haven of dim lights, quiet and comfort. This room is also where I keep my computer. Sometimes, focusing on something like an easy computer game can help me refocus. I also hear caregivers complain that the only thing their loved one wants to do is sit in their room doing nothing. Most likely, they are not doing "nothing." They are quieting their brain so it can recharge.
Unless it is interfering with the household schedule to the point of disruption, it does not make sense to complain or worry about how much they are sleeping. First of all, I need to be in bed for at least 10 hours before I am rested enough for my brain to start functioning again. If it has been a stressful time lately, it can take more like 12 hours. I am not saying to never worry about them sleeping too much. If they are sleeping more than 12 hours with a couple naps throughout the day, you may want to mention it to their doctor.
I cannot speak for everyone with FTD, but when I get nasty, lash out and become non-cooperative, it is usually totally due to frustration. It is frustrating, beyond comprehension, to not come close to being able to do things that used to be done automatically, without thinking. It is frustrating to struggle to add a couple numbers after working as an accountant. It is frustrating when I cannot effectively explain or communicate what I am needing. If I cannot think of the right words, or if my stress level is high enough that I can barely speak anything at all, it becomes beyond frustrating. I just want it to all go away. This is when, if FTD would just allow me to cry, I would be doing just that.
What can you do when your loved one reaches that point? Distract, distract, distract. Try directing them to a different activity or suggest they go to their "quiet place" and relax for a while. If I cannot do a task you are asking me to do, dealing with me when I am at that frustration level is going to be more exhausting and stressful for you than it would be to go ahead and do it yourself or to let it wait. If I am talking too much which is adding to your stress, stop me and suggest that we talk about it later when you can give me your full attention. It's okay to stretch the truth a little if it distracts your loved one from negative behaviors. If you try to explain things logically, it is more likely to cause a blow up than to calm the behavior. Nothing wrong with a little bribe either. "If you sit quietly and let me finish this, we can take a break for a cookie." That would work for me most anytime! Those with FTD love our carbs and sugar.
I know I have taken the risk of insulting some caregivers. That is not my intention. Like I have said many times before, I have been on your side of the fence before. I was a caregiver before I developed the same disease myself. I do understand. I also know now how often, with what I know now, that I would have handled things differently. With the start of the holiday season hitting us this week, the stress levels are going to be increasing. Hopefully, reading this just might help bring a tiny bit of calm into the picture.
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