This morning, while lying in bed but wide awake, I wondered what subject I should write about today. I came up with a few ideas and really liked a couple of them. Just as some things seem to happen, a couple things occurred today totally changed my mind. Last week I attempted to describe how and why we blow up or break down. This week, I want to talk about something that also occurs in the life of someone caring for or being someone with FTD.
One symptom of bvFTD, as well as all the other categories under the FTD umbrella, is increased impulsive behaviors. This is also sometimes described as the loss of filters between the brain and our actions. One example that I often use is the day I decided to go out for our mail. Our mailbox is across the little street we live on. I exited my house, walked up the drive and began crossing the street. I totally forgot about the huge and heavy trucks that sometimes travel our road to get to and from a quarry. I learned 3 things that day: these trucks do not stop on a dime, the horns are very loud when the driver is laying into them and those same drivers have a very vast variety of swear words in their repertoire.
I was very lucky that day. If that driver had not been paying close attention, I would have become roadkill. This event was a total result of impulsive behaviors. I knew I wanted to get to the other side of the street but gave no thought about any risks involved.
That increased impulsive behavior is also why many of us with FTD make poor financial decisions. We see something in a store or on the internet and think it would nice to have or it's pretty, so we buy it. We don't stop to think about whether we have the financial resources to be able to afford that purchase or whether we will still be able to purchase groceries the next day. We also don't bother to figure out if we have any use for it, but danged if it didn't look good! This can be even worse. Many with FTD become shoplifters. They do not intend to break the law or steal. They simply see something they like and pick it up and take it. It's an impulse. There is a defective or missing filter between brain and actions. We see it, we want it and now we have it. Not only does this cause huge arguments between the caregiver and the one with FTD, it also can cause huge legal issues as well.
Another large part of this FTD symptom is spewing out words without thinking about how they might offend, be inappropriate and just tick people off. This is easiest to explain as the lack of a filter between brain and speech. We no longer have the ability to think before we speak. I have experienced this problem hundreds of time. If I think it, I say it. A friend is wearing a green shirt. Instead of saying something innocuous like "You look nice today," I may say "that color looks awful on you." I have also developed a very large vocabulary of inappropriate and offensive words. This is not in character for me. I have been known to cuss a time or two or a few hundred but I never used the horribly inappropriate and offensive words that I use now. If I get angry, you are going to hear the "F word" at least a couple times. This was not my norm prior to FTD.
Another big part of inappropriate speaking can be of a sexual nature. This can be telling a dirty joke to your friends at church or in the workplace. It can be making sexual innuendos to people, even strangers. Just like shoplifting, this can get you into huge trouble.
Another issue for increased impulsive behavior can be wandering. Why those with dementia often think they need to go home or need to go somewhere else is an involved problem. Part of the answer is that they just do not feel comfortable in their surroundings anymore and want to go find their home where they remember they loved to be, even if they are still in that same home. It is difficult to eliminate the impulsive behavior problem from the wandering issue. Things like is it day or night, do I know where I am going, am I dressed appropriately, will anyone know where I have gone and so many others do not occur to them before they wander off.
These activities, the wandering, the swearing, the shoplifting, the impulse buying and the insults, are not intentional. This is difficult for many who do not have FTD to understand. Responses are often things like "It goes against logic. What do you mean he doesn't know that what he just said to me was an insult?" " Of course she knew we couldn't afford that new sofa." "He just doesn't bother to stop and think." "Of course he knows it was wrong to take that box of cookies without paying for it."
"How in the world could she say such a thing to me? She knew I would be hurt." "He's just doing that to irritate me."
Hearing someone explain that "It wasn't them doing that, it was the disease!" gets old really fast. It is human nature to be insulted and frustrated, even angry. Think of the impulsive things that a child does or says because they have not yet learned that it wrong to do so. This is the same idea, but in reverse. They used to know but that knowledge has been stolen from them by the disease.
It is important for caregivers, loved ones and anyone else involved in the life of someone with FTD to try to stop before reacting. The one with FTD does not have filters, but the ones affected do. Take a deep breath and count to ten before you react. Remind yourself that it IS the disease. Would the person they were before the disease have done/said that? Reacting in anger and frustration is not going calm the issue, it will make it worse for both of you.
On the other hand, if you do react with anger, frustration or any other way that escalates the situation, don't beat yourself up. Some days, it all adds up and takes its toll or even one event is too much to deal with. Last time I checked, all caregivers were humans too. Just like the one with FTD, the caregivers have limits to what they can deal with at any particular time. I am not going to go into things like the importance of respite care in this blog. The needs of the caregivers is a huge subject on its own that will have to wait until another blog entry.
This blog came about after a couple things happened to me today. Someone was telling me how I was saying the wrong things and not properly thinking about things before I said them. Duh! Why didn't I think of that? Another was questioning why I reacted to something the way I did. The totally honest answer of "I don't know" was apparently unacceptable. The scary part is that these same people claim to others that they FTD. To them, I would like to say that just because you know someone with FTD, have read a few articles or even live with someone who has the disease, it does not mean you understand what we are going through. Your life experiences are interesting and I like to hear them but they just don't apply. I truly appreciate your effort to understand but, please, do not try to tell me, after the fact, what I should do or how I should react to things. There is no way for you to give me back my filters. I wish you could.
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