Riddle me this... What do you get when you get someone with FTD and someone with hearing problems together? Oh, wait, that isn't funny at all. Then again, neither is the circumstance.
When scrolling through the support groups for FTD that are open to both caregivers and those with FTD, they seem to be monopolized by caregivers venting about their situation. They also vent about the person for whom they are the caregiver. If you skip over the ones that are pure resentment, you are pretty much left with the ones dealing with the frustrations of the caregivers. I can totally understand this and probably take less offense than most of us with FTD, because I have lived the caregiver role as well. It does boil down to frustrations: frustrations with the disease itself, frustrations with the one with FTD, frustrations that they have no support system, and frustrations that the world doesn't acknowledge FTD. This last one is especially true when you are trying to arrange benefits such as disability insurance, medical insurance and on and on.
What I have found in my own dealings with FTD, is three distinct "hearing losses." When you read the posts or speak with someone who has FTD, you realize the frustration issue is true. The frustration level of dealing with FTD is often overwhelming. Every time a new symptoms appears or an existing one worsens, you get a whole new batch of frustrations. When you are trying to communicate with someone who does not understand FTD, it leads to total frustration. When people give you unsolicited advice on how to cure your disease produces extreme frustration, and sometimes anger. When someone tells you that you look good and can't possibly have dementia, you feel like screaming. Of course, this comes from peoples believing that dementia means memory loss.
These situations lead to a type of "hearing problem" of disbelief. People filter what you are saying through their own understanding and opinions of what dementia is. If they realize that you are having a lot of symptoms similar to those with Alzheimer's Disease, they quickly jump again to the conclusion that dementia equals memory loss, along with dementia equals Alzheimer's. They don't hear or believe another word that you say about FTD. Many people assume that you just don't understand or don't remember what is wrong with you. The other reaction is that since there is no, or minimal, memory loss, there is nothing wrong with you. This "hearing problem" is ignorance of FTD and an incorrect understanding of the word dementia. I think these people believe that if they have never heard of FTD, it does not exist. People like this will never be part of your support system for you or your caregiver, mostly because they don't think it is needed.
Another type of "hearing problem" is denial. People don't want to believe their is anything wrong with you. If they don't listen to it or accept it, it won't be true. They want to believe that your symptoms won't get worse and that you won't develop any new ones. I get that a lot, especially from some of my family members. If I express concern about how I will deal with a symptom that I know is worsening, will worsen or if I am starting to experience a new symptom, I may as well not say a word because I know what I say will be ignored or brushed aside. Most often it is like looking into a blank face with no reaction, no response, nothing. I don't know whether what I said was literally not heard or if it is being blocked out because if they acknowledge it, it might happen. The third possibility, in my mind, is that they just don't care and are dismissing whatever concern I am expressing. In reality, I am sure that is not the case, but I cannot help but worry that it is. Can you imagine, trying to discuss something that scares the crap out of you and getting no reaction? Trust me, it hurts immensely! Leads me to talk to myself!
The third type of hearing problem, really is a hearing problem, a physical problem. Often times, a person with FTD starts speaking more softly than they did before FTD. If the caregiver has hearing problems, this becomes a difficult combination. This leads to extreme frustration for both parties. Fortunately, some times, it leads me to a lot of laughter. I will say something and the response will be something like, "I didn't get that". I, of course, will repeat it a lot louder. Then I get the response of "Shhh... you don't have to yell!" The other circumstance that will lead to laughter, unless I am already frustrated, is when I say something and get a totally different statement said back to me to verify what they heard or to seek more information. Something like, "I think I will make chicken for supper." and when it is repeated back to me "What kind of Tupperware?" Extremely frustrating, but at least understandable, especially when it at least rhymes. Frustrating, because I think hearing aids would solve the problem. This "real" hearing problem is not nearly as frustrating as the others, but it adds to the aggravation of not getting a response after saying something. Now, I don't know if they don't care or if they choose to ignore it so they don't have to think about it, or if they actually did not hear me. Again, I end up repeating it, but more loudly. It just creates a vicious cycle and usually prompts a resentful answer.
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