Today is my third (of a still undetermined number) of Q & A’s in Dementialand. Today’s question is from an individual who has been diagnosed with Frontotemporal Dementia.

Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).

I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.

All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.

D

Dear D,

Let me start with this…I did a series of posts on dementia and the senses. Here you go:

Sight: What You See in Dementialand

Hearing: What You Hear in Dementialand

Taste: What You Taste in Dementialand

Touch: What You Touch in Dementialand

Smell: What You Smell in Dementialand

You can email these to your friends and family.  You can send them text links. You can print them out and mail them. You can even read them aloud or deliver them on a silver platter while wearing a tuxedo or ballgown. If I’m being honest, my friend, I don’t think this is going to make a bit of difference.

You see, these people have not yet been responsive to your diagnosis and the changes occurring in your life. They could have googled to learn more about Frontotemporal Dementia. They could have asked you or your caregiver questions. They could have shown an interest in learning how to support you. And they haven’t.

I wish I could tell you the words to say when they are disrespectful and doubtful of your diagnosis to make them understand. I regret to tell you that these words don’t exist.

You are not a diva. You have a disease. It is a real disease; you can “see” the disease at autopsy–and many times on various scans during life. And while most people associate dementia with memory loss, it’s about total brain failure. And sensory overload is a large part of this. In fact, I believe the anxiety caused by sensory overload is one of the least talked about–but most debilitating–aspects of various types of dementia.

The dementia brain works very hard to interpret its surroundings. When it gets tired (which doesn’t take long), the individual with dementia is no longer able to control their emotions and impulses. At this point, the person who has dementia may become irritable and difficult to be around. Or they may shut down completely. We sometimes say they are giving us a hard time, but they are really having a hard time.

You can tell your loved ones this, but I am not convinced it’s going to make a bit of difference. In fact, explaining the symptoms of a disease that they believe doesn’t exist in the first place probably won’t get you too far.

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

So why can’t you come when it’s just family? Because you’re not feeling up to it. Because you’re feeling overwhelmed. Because you need a break. Because spending your precious mental energy on being around people who don’t make an effort to understand you just isn’t worth it. I don’t care what you tell them. There’s never going to an explanation that’s good enough–so tell them what you want. And leave it at that.

You have a reason (and a valid one) for not attending your father’s funeral. If people ask, explain it once. If they don’t get it, stop. Just stop explaining yourself. It’s not worth your time, and it’s not worth your limited energy. Walk away, figuratively and literally, from people who question whether you really have a disease. In the best of circumstances, arguing with family is energy-zapping and frustrating as heck. To you, it’s positively toxic.

You ain’t got time for this.