We Are Not Children

I don't often have difficulty coming up with subjects to focus my blog on each week. Ideas pop up all the time in my life and in others relaying frustrations or questions and observations. Today, in one of the online support groups, a person with FTD asked about caregivers and others treating those of us with FTD as though we are children.

This has been one of my pet peeves since being diagnosed. I often get frustrated enough to say, "I do have dementia, I do not have stupid!" Most of the time the other person does not grasp what I am saying but I'm pretty darned sure they get the message from the tone of my voice.

When I replied to the gentleman's question this morning about family members, caregivers and others treating someone with FTD as though they were a child, it hit home.

I answered his question that he was certainly not alone in this frustration as did many others with FTD. I also told about how I sometimes judge people by whether they treat me like a child or the intelligent person I still am.  If I am meeting with someone I have not met before' yet considering doing business with them, I use this as a litmus test. I tell them that I have FTD, a rare disease that causes dementia. I watch their face, especially their eyes, to see what changes come across them.  The reactions vary.

Many times, just by watching their face while I tell them, I can immediately tell whether this bothers them or not.  The next part of my test is whether they start speaking to me differently than before I mentioned the "D" word. Unfortunately, quite often, their reaction changes their entire demeanor. This is when they start speaking me like you would a child.

How do they act differently? The start speaking more slowly and, for some reason, louder. I have not heard of very many cases of dementia  causing deafness, yet they do. They start using smaller words or defining words to me as though I could not possibly understand what they are saying.  Or, if there is someone with me, they will start addressing them instead. It could be comical if it didn't anger me so much. These are people I do not do business with. I have walked out on a financial advisor, a social worker and sales people.

One of the most interesting things, at least to me, about those with FTD is that a majority of them are above average intelligence. Many have held high-power jobs and highly responsible positions. We do not all of a sudden lose that intelligence with FTD. We may struggle for words or ask someone to repeat what they are saying. I swear sometimes if I just blink, I miss the entire sentence someone is saying. I find this is because I can not instantly jump back into what is being said after being distracted, not that I am stupid. It is simply having a shorter attention span than I used to have. 

Are those with FTD like children?  I say "Hell, no!"  We may exhibit some childish behaviors but that does not automatically reduce us to the level of a child. What am I calling childish behaviors? Having no filter between brain and mouth. We think it, we say it. Also, we often display dis-inhibition. Just as a child may walk into a room in their underwear, someone with FTD may not stop to realize they are not dressed appropriately for company.

Sometimes, it will seem as though we experience meltdowns and appear to be throwing temper tantrums. Maybe some do, but the majority of us do this when we are totally frustrated. It can be from not being able to do something we used to, being criticized or made to feel inferior/worthless or not being able to express what we want to say. 

When the person has Aphasia, many seem to dismiss their value. It is as though they think if you can't talk, think of words or use incorrect words, that you can't think either. 

I clearly remembering a time when a caregiver for someone else said, while dressing the one with dementia, "Oh, isn't she just so cute? It's just like dressing a doll." Excuse me? She is not a doll. She has a brain, has preferences and feelings.

One thing I beg of caregivers and medical providers. Please remember that we can still hear, understand and think. When we are talked down to, it is demeaning and defeating. In my case, you would be taking cover because I would start lecturing quite loudly. When my daughter was quite young and she was waiting and being ignored, she would say "I'm still here!" That is the way I feel when someone is speaking to my caregiver or family member instead of talking directly to me. Before my husband succumbed to Alzheimer's Disease, when home care workers would start talking to me, usually over his bed, I would say that he could probably answer that better than I could.

Give us that chance to speak or the time we need to gather our thoughts. Then, if we still cannot express ourselves, that is when someone else may jump in with prompts or help with words. I acknowledge that we sometimes act childlike but that does not require anyone to respond as though we are children.

Again, I will use an example of my daughter. I never spoke "baby talk" to her, at least not after she was a month or so old. She may have been doing childish things, which was really her job, but I did not respond childishly. I spoke to her all the time. If I was making a bed, I would talk about making a bed. That could explain why her first words were "kitty cat" and "Daddy go to work?" Now, during the teenage years, I will admit to responding to her in kind which led to a lot of screaming matches until I realized that was just making things worse. Once I stopped screaming, so did she. 

Like with my daughter, perhaps if you respond to the FTD'er calmly and softly, they just might calm down. If nothing else, it will ease the strain on your vocal cords. I realize it may not always work, you may have to try redirection or distraction, but my days and nights were much nicer when I was speaking calmly to my husband, not adding to his frustration or causing a meltdown. I can also honestly say that I never treated him like a child, not once, even when he was doing childlike things.