5 Things Wrong With The Focus on Lewy Body Dementia as Robin Williams' "Reason" for Death By Suicide

I just saw this headline today: "Robin Williams driven to suicide by Lewy Body Dementia." I have so many issues with this and I wanted to share a few of the problems this headline brings up in our culture today.

Katie and her Mom working on an art project made to be accessible for the stage of Lewy Body Dementia Carol had at the time, in 2011. Copyright K. Norris. 

Many of you may know that my Mom has been living with Lewy Body Dementia for eight years now and I live with mental illness. I also work with people in both of these categories. What concerns me is that the reactions I have seen on social media from people upon reading this story about Robin Williams fall into these areas:

• "Now it makes sense."
• "If he was hallucinating he must not have been in his right mind and the suicide must be because of hallucinations."
• "Now I feel so bad for him, this must have been so difficult."
• "I would not want to live with dementia and hallucinations either, or the possibility of loosing physical ability. Now I understand the suicide."

These comments show many misguided ideas about suicide, mental illness, dementia, and disability, and I have outlined a few of these issues below:

1. A need to justify suicide. Our culture seems to have a need to justify suicide, to find other reasons for death by suicide rather than mental illness. Depression or another mental illness is "not enough" of a reason to die by suicide. Apparently, suicide is only justified if you are going to be physically or mentally incapacitated at some point. (Many people ignore the fact that many forms of mental illness render you physically and mentally incapacitated.) This is just a wrong way to look at suicide for many reasons, some of which I will mention below. Overall, death by suicide is usually an outcome of an illness, just like death from cancer is often an outcome of cancer. If we keep needing to find ways to justify suicide, then we have no compassion or understanding when suicide takes the lives of those we judge as not "sick enough" to die by suicide. 
2. Implying physical disability is so terrible no one would want to live while disabled. The reason people are so focused on Robin Williams having Lewy Body Dementia is that is dementia with Parkinsonism, meaning you loose functioning of your body as well as your mind. It is also a dementia that often comes with hallucinations. For some reason, our culture sees loss of physical ability as one of the worst things and assumes, of course, no one would want to live like that and death by suicide is justified. This is so wrong. Many people with physical disabilities would take great issue with this concept. By promoting this idea, we are essentially saying that people with physical disabilities have less worth and dignity and probably should not be here. Some of us may see significant loss of ability (mental and/or physical) as something we would not want to live with. That is a personal belief and a choice a person may have to make at one time. However, we can not promote the assumption that "obviously" anyone who is disabled "enough" would want an end to their life. For a good summary of the issues around this, please visit the site, Not Dead Yet. 
3. Claiming mental illness is not a "worthy enough" illness. I am so tired of people not understanding mental illness as a real illness and always needing to try and cover it up through another, more "worthy" illness. This is why people make the "Now I understand" comments about this story, because apparently mental illness is not a real illness with an understandable outcome of death by suicide. Robin Williams was struggling with mental illness and addiction his whole life. I wish we would have had more compassion for him during those dark times rather than only having compassion for him after death when it is revealed that he had a "worthy" illness, such as Lewy Body Dementia. Since my Mom lives with Lewy Body Dementia and I live with mental illness, I could not imagine saying that death by suicide due to her illness was more "worthy" and "acceptable" than due to my illness. Both illnesses are devastating and come with a risk of death by suicide. 

   

   Katie and her Mom, Christmas 1996. Copyright K. Norris
4. Implying that anyone with dementia would not want to live, which harms people currently living with dementia. Dementia is a complex illness which manifests differently in every person. When we talk about it in such a blanket way and promote misinformation about it, we perpetuate the idea that dementia is so horrible, no one would want to live with it. People live well with dementia for years. Some dementia progresses very slowly and it may be ten years until the person gets into late-stage dementia. Some people may want their life to end earlier than late stage dementia, and I can understand that. Other people may not want that. The point is, when we have these conversations, we need to acknowledge that this is personal choice and the choice of one person is not the spokesmodel for all people. When we frame dementia as a reason for death by suicide, we are sending a message to all people living with dementia that their life will be so bad, they might as well not be here. That is devastatingly sad. I know so many people living well with dementia and I hate that they will see dementia framed in this way.
5. Perpetuates shame of death by suicide. I feel terrible for those who have suicidal ideations or who have had suicide attempts that see this conversation about Robin Williams and dementia. What are we supposed to think about ourselves? That we need to be "sicker," or we need to suffer more in the world's eyes in order to have suicide be part of of our illness and part of our life story? We for sure know we can not talk about suicide for fear of being told that we are being selfish and that suicide is not real, unless you have an illness someone else deems "bad enough." Also, many people who need help, won't ask for it and won't get treatment because suicide is, again, cloaked in shame and the idea that anyone who dies by suicide is bad- unless they had some acceptable other illness.    

Katie and her Mom, Christmas 2013. Copyright K. Norris.

I live, every day, seeing the impact Lewy Body Dementia and mental illness have on people. I know death by suicide can be a result of both illnesses. I know that both my Mom and I have said "I want to die" due to our illnesses. I also know that it would be wrong for anyone to look at me and my Mom and say one of us had a "good reason" to die by suicide and the other did not. What we really need is more awareness of the different illnesses of the brain. We need to focus on quality of life, worth, and dignity. Mom and I both want the same thing, a life of meaning and purpose, with dignity and respect. We can work to make that a reality for people with all kinds of brain illnesses- even dementia and mental illness. We may or may not decrease the numbers of death by suicide, but we will decrease the shame around both of these illnesses and increase the likelihood of a better quality of life and more compassionate care for all.

Blessings,

Rev. Katie

Treatment: Music and the Brain

Many of us know that music makes us feel emotion, helps heal our hurting heart, and nourishes our soul but do you know that music is being used to help in the treatment/management of different brain diseases? Of course there are many music therapists who do one-on-one sessions, group singing, or drumming circles, all of which are very important and make people's lives better. But I have always thought that people also need help when they don't have access to a music therapist or group activity. What about the middle of the night mania or the mid-workday anxiety? What about the time in between activities in a dementia care unit when most people are left sitting in a chair at the TV or they are agitated and bored laying in bed?

Dan Cohen, Executive Director and Founder of Music and Memory started an iPod program for people in nursing homes in 2008. His program has been wildly successful for people with dementia, even decreasing use of antipsychotics by 50%! How amazing! I first heard of Music and Memory doing research for care of my Mom with dementia and I found this video of Henry: (get a tissue because you will cry.)
Then I reflected on how I actually use music to treat my mental illness without even knowing it. I have different songs that I typically listen to depending on my emotional state. Now one might think that when I am depressed, I listen to sad songs, or when manic I listen to upbeat songs. However, I actually use music to manage my illness better. A sad song when you are depressed only increases the depression. Instead I listen to more upbeat inspiring songs when I am depressed. When I am anxious, I can't listen to music with a heavy beat because it makes the anxiety worse so I listen to things that are more soothing and have a more even rhythm. For me, especially as a minister, the message of the song matters, so I am always collecting new songs that fit not only the tempo and feel of what might help bring me out of a depression or calm a panic attack at work, but also ones that change my repetitive or negative thinking. If I am convinced I am a terrible person I find a song with the opposite message to break that cycle. Using music in this way makes it so easy. I don't need a therapist with me all the time. I have a treatment in my pocket at work that I can use for just five minutes. It works amazingly well.

While I have not found any research just focusing on mental illness and the use of music in this particular way, Music and Memory does have a video of Gil, who has depression, and Denise who is bipolar schizophrenic that shows just how much the music helps them:

As Jaak Panksepp says in The Emotional Antecedents to the Evolution of Music and Language:

"In a sense, music not only elevates but also heals the human spirit. It is a wonderful way to increase quality of life, especially among elderly who have the fewest options (Laukka, 2007). To the extent that music sincerely conveys love, social attachment, and the joy of human interaction, it might prove effective as a mild antidepressant and deserves continued (and better) evaluation in psychiatric contexts. We await substantial full-scale studies of how some humans, in the despair of depression, may be lifted once more toward the varied emotional richness of human existence by the redemptive buoying of despondent spirits through great music. Many other beneficial medical effects of music have already been reported (for summaries see Panksepp & Bernatzky, 2002; Spingte & Droh, 1992)."

Blessings,

Rev. Katie

P.S.: If you are want more information about music and theology and worship, please look into Rev. Thandeka. Rev. Thandeka's work is where I have found much more research about neuroscience and how music effects the brain, such as the article by Panksepp above.

Rosie: Service Dog Helping with Dementia

This is a blog post that is also on my other blog Moving in With Dementia, which is about caring for my Mom who as Lewy Body Dementia.

About four months ago we adopted a puppy who we are training to be my Psychiatirc Service Dog. While this training can take years, and our puppy Rosie is still just trying to learn how to contain her puppy energy, I find her to be an amazingly intuitive service dog. I have had many dogs over my lifetime but few have been so in tune with the emotional needs of the people around them as Rosie is, and she is just in the first few months of training.

Today we had a family party and we were able to have Mom over to our house. Rosie was in her crate for the beginning of the party and after everyone arrived, I let her out. We had about twenty people in the house and instead of saying "hello" to the people that were in the room she was in, Rosie instead went directly to see my Mom. A person she has only met twice.

Rosie was so attached to my Mom that my Aunt thought Rosie must have lived with my parents before we moved into our new house. She assumed Rosie knew Mom and missed her. Rosie was jumping up on my Mom, trying to get into the Broda chair with her. While this was not the best choice for Rosie because she was too hyper, her instincts were correct.

Rosie somehow knows to "ground" people when they are injured or hurting. This is a deep pressure therapy where the weight of the dog helps to calm the person who is anxious. Rosie's instinct is to lay herself on top of people to help make them feel safe and comforted. "Grounding" will be a Psychiatiric Service Dog task that Rosie will be able to do, gently, on command but right now she does it in her hyper puppy way becasuse she just wants to help other people.

Rosie "grounding" me.

I am continually amazed at the connection that animals have to us. I can't believe how Rosie knew, out of a houseful of twenty people who were in separate rooms, to go straight to the person who needed the most love and care. I felt so proud of Rosie today and her ability to help others. I also felt a great connection with Mom as she and I always cared for our dogs together throughout our lives. Rosie trying to take care of Mom was, for me, kind of another way that Mom and I are still connected despite the fog of dementia that keeps getting thicker and thicker. I am glad my puppy can see through the fog even better than most people can.

Blessings,

Rev. Katie