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

My Second Blog: Bipolar Spirit

I have written a few posts on this blog that address the issue of mental illness. I was surprised that I received quite a few comments and personal emails about those posts, either from others with bipolar or from loved ones who are their caregivers. I found that there are many people who are looking for support around the issue of mental illness.

Like dementia, mental illness affects the whole family. It is also an illness that, for most people, is not curable and medications do not always work. It is manageable though, and like dementia takes a lot of trial and error to discover how the patient can have the best quality of life possible.


So, I have started an additional blog, Bipolar Spirit, about mental illness and the spirit. I believe mental illness is a chemical imbalance and also a spiritual issue because of the interconnection between mind and spirit.

I will continue Moving In With Dementia and I am so grateful for how many of you read this blog and contribute to the care of people with dementia. I look forward to the future of both blogs and how we as a community can help combat these illnesses which we can't fix, but can manage.

I would also like to let you know that you can now receive email updates about my blog. You will find the email signup on the right side of each blog.

Blessings,

Rev. Katie

See My Humanity, Not Just My Illness

I was talking with a few ministers about social media, such as Facebook, at General Assembly (GA) 2011 yesterday. One minister said they did not want a church Facebook page where people can post to it because "there are a lot of people in our area with bipolar and I don't want them posting things that will cause problems."


This is not the first time I have heard a comment like this in professional and social settings. In fact, I hear such comments about people with bipolar disorder at least once every few months. They show the enormous stigma against mental illness, particularly bipolar.

I spent all week at GA listening to the stories of our last 50 years since the Unitarians and Universalists joined together so that this faith could be a source of justice in this world. How we were heavily involved in the Civil Rights movement; we protested this week to show support for the gay, lesbian, bisexual and transgendered community; and we have inclusivity ministries. We stand on the side of love and want no one to be discriminated against based on belief, age, race, ability, social class, or sexual orientation. And yet when I mention that this stigma against people with mental illness is unkind and not in line with our faith, many people think I am crazy (and in their minds, technically, I am).

I have sat through chaplaincy trainings focused on how the brain of a bipolar person is unstable and therefor they can not be trusted to be telling the truth or be able to make decisions. I have had people tell me not to let anyone know of my illness because it will affect my career.

I know there are many injustices in our world, and I am just speaking about this one today. What I have found in my experience though is that this injustice is one we do not talk about. Many people do not want to advocate for people with mental illness because they think it will reflect badly on them. No one wants to be associated with "craziness."

Because of this stigma, people with mental illness often don't ask for help, their families are secluded and hurting, their children have no one to talk to, and their illness often progresses.

I never know what to say when people make these judgmental comments about those with mental illness. How do I respectfully tell them how hurtful and degrading it is to know they assume people like me are irresponsible, a risk to society, and not able to contribute to this world just because we have an illness? How do I tell a fellow colleague that Unitarian Universalism is a healing faith for people with mental illness and judgements like this decrease the ministry they can do?

What I wish is that people actually sat down and listened to the stories of people with mental illness instead of just focusing on the symptoms. True, this is a devastating illness that hurts not only the person with bipolar, but also people around them. However, I am able to have a meaningful life because my husband and my home Unitarian Universalist church happened to be people who saw my humanity and said they would help me. They held me accountable and showed they believed in me. They never let me give up on myself and they keep an eye on how I am doing to help me tweak my treatment as necessary.

I feel mental illness is a physical and spiritual illness. The stigma from society, and the internal doubt and questioning this illness brings to a person means they need not only medical support, but spiritual as well in order to manage their illness.

No matter what faith we are, religious or not, we can help end this stigma and allow people with mental illness to be productive members of society when we actually see them as human beings.

Blessings,

Rev. Katie