Hiding Dementia Causes More Harm Than Good: Casey Kasem

A few days ago, I was listening to a local radio station, and they briefly mentioned that Casey Kasem (Top 40 radio host) was missing. I did not pay too much attention to what they were saying, but I remember they mentioned that Kasem's wife and kids were upset with him due to the way he was acting and that he was mean to them. I figured it was just another misreported story with people making assumptions in order to sensationalize the story. True, it was a misreported story, but I did not know that this story would be near and dear to my heart because, apparently, Casey Kasem has Lewy Body Dementia, which is what my mom has. It is unclear what has happened to Kasem, except that he was removed, supposedly by his wife, from the medical facility he was being treated in and no one knows where he is.

There are a few interesting things I noticed in just the few news reports I have heard and read about Kasem. First there were the radio shows comments on some unknown bad behavior on Kasem's part. I remember how their statements changed the way I thought about this man who I did not know, but had never heard stories about him being mean in any way. I thought "Just another person who sounds nice, but then you find out he's actually not." Clearly there were rumors about his "behavior," and instead of anyone being honest from the beginning about Kasem having dementia, the family and media hid it, making everything confusing and painting him in a negative light.

The other thing that was interesting was an interview with Kasem's daughter who says Kasem's wife took him out of the medical facility (this is not confirmed to my knowledge.) Of course the reason the daughter gives for the wife acting this way: mental illness. Just another time people blame mental illness for any behavior they do not like. Then, in that same interview, dementia is again hidden and they only say Kasem has Parkinson's, which is seen as a more "acceptable" illness. (Technically, that is not a lie. Lewy Body Dementia is dementia with Parkinson's.)

I am so tired of everyone trying to hide dementia, and in that hiding, the stories that come out usually reflect negatively on the person with dementia- implying that they are mean or in some other way just not a very good person. Denying the illness and not getting the proper treatment only makes behavior issues worse, which then increases stigma against the illness when it is finally revealed. Now that the story has come out about Kasem having Lewy Body Dementia, anyone who heard reports that he was mean to his family, now just blames that on dementia, rather than looking at the care he received and communication issues that can lead to behavioral problems.

I am also tired of people automatically blaming any supposed negative actions or behavior on mental illness, like Kasem's daughter did with her step-mother. Again, this adds to the stigma against mental illness, implying only people with mental illness do negative things. In reality, there are a lot of perfectly mentally stable people who do far more negative things than anyone I know who has mental illness.

This small news story about Casey Kasem just brings to light the fear and misunderstanding we have over various illnesses of the brain. What I wish is that someone would have thought of Kasem first, and considered the best way to help him have the best life he can living with Lewy Body Dementia. Hiding his illness resulted in a serious risk to his life, and that is a tragedy. I hope he is found and that his community rallies around him, treating him with compassion and respect in the end years of his life.

Blessings,

Rev. Katie

"I Want to Go Home"

You often hear about people with dementia in nursing homes repeating over and over again "I want to go home." In everything I have read, this is assumed to happen because the nursing home is not the person's home so clearly they miss where they used to live, they don't understand why they are in a new place, and logically they want to go back home. However, is this really an issue of living in a nursing home and having dementia or is this a common problem with dementia in general no matter where the person lives?

Over the past few months, Mom has not recognized her home. She thinks where she lives is two houses instead of one. She often asks what happened to her house, says that she wants to be in her own house, and asks where her house is. When we ask her to describe what her house looks like, she describes the house she is currently living in so it is not like she is remembering a house from her childhood or another time in her life and so she does not see her current home as hers.

The only thing that has changed in her house is that what used to be the "great room" (a large living room) was sectioned off and a bathroom was added four years ago when we moved in and in anticipation of knowing Mom would not be able to use stairs in the future. However, the rest of the house looks the same. That change may explain why she thinks there are two houses, but she does not even feel like one of the two is her house.

For some people, what if dementia means you never feel like you are at home? Home is not just a physical place, but an emotional and spiritual one. If home is a place filled with your memories and hopefully a feeling of safety and with dementia you are losing your memories and everything feels unsafe, maybe there is no place you can call "home." Maybe when someone with dementia says "I want to go home" they are not asking for a physical place, but they are expressing how unsafe they feel. They may be telling us how unsure they are of life and everything they once knew.

Photo by Jeff Norris

This would not surprise me. When I was little and started having problems with anxiety and bipolar disorder when I was anxious and scared, I would rock back and forth and say to myself "I want to go home" yet I was in my own house. Home was safety, a feeling that the world was alright. I didn't feel that way so I was not at "home." I still say "I want to go home" when I am having a bad day.

Maybe the feeling of wanting to go home is common for those of us with certain brain illnesses because we are looking for emotional and spiritual comfort rather than an actual physical space we call home.

Blessings,

Rev. Katie