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

Rosie: Getting a Psychiatric Service Dog

A while ago we came across information about Psychiatric Service Dogs (PSD's). You are probably most used to service dogs such as Seeing Eye Dogs, but over the years they have found that dogs can be trained to assist with all kinds of disabilities.

Psychiatric Service Dogs assist people with whatever disability comes with their particular mental illness. For instance, people with schizophrenia who hear voices can train their dog to check rooms for them or alert them if someone else is around them. If the dog does not see or hear something, then the person (the dog's handler), knows that what they heard or saw was not real. PSD's can ground someone who has Post Traumatic Stress Disorder when they have a dissassociative flashback or can awaken them during night terrors. PSD's can stop people who self mutilate by pawing at them until they stop the behavior. Often psychiatric medications make you forgetful and if you don't take your medication you can have severe side effects so your dog can be trained to bring you your medication. Your dog can be trained to awaken you when you can't awaken due to medication side effects or deep depression. A PSD can ground you and provide tasks that decrease anxiety enough so that a person can have a job and function every day. PSD's can even alert you to a panic attack or manic episode before they happen. These are just a few of the things Psychiatric Service Dogs can do but basically, they help you live your life with your disability.

Once we found out what PSD's could do we decided that getting one would be a good option for me, especially since I have such a hard time with medications.

Getting and training a PSD is not all that easy. Typically with many other types of service dogs, you can get a dog who has already been trained from an organization. There are places that train service dogs such as Seeing Eye Dogs, Autism Service Dogs, and there are even organizations that provide Veterans with Post Traumatic Stress Disorder (PTSD) with PSD's but other than that, most Psychiatric Service Dogs are trained by their handler with the assistance of a dog trainer and someone who specializes in training dogs to do PSD tasks.

From my experience and with the resources we have, here are the basic steps to getting started with a PSD:

1. Talk to you Psychiatrist and/or Psychologist. As with all types of service dogs, you must have a disability in order for you to have a service dog. If you have a disability, your doctor will wright a letter stating that you have a disability and are in need of a service dog. You will keep this in your files, but you do not need to carry your doctors order with you as it is illegal to ask for proof that you need a service dog.
2. Find a basic dog trainer who uses positive reinforcement training, most often Clicker Training. Do NOT use a trainer who uses yelling, shock collars, or other forms of negative reinforcement. This trainer will help train the basics, socialization, and the Canine Good Citizen Class. 
3. Find someone in your area who does PSD task training or find online resources for PSD task training that your regular trainer can help you with. Make sure your trainer knows how to train a dog for all the basic service dog requirements like potty on command, tucking their tail while inside, how to sit under a chair or table, etc...
4. Find a dog.  There are many ways you can find a dog appropriate for a PSD but the best thing to do is have a dog temperament tested by a vet behaviorist. I would suggest finding a rescue dog that has gone through a basic training program and has passed Canine Good Citizen so you know they are trainable and they will be a bit older, past the puppy phase, which is really hard to handle. Just because the dog took well to basic training though does not mean the dog will be a good service dog so you need your trainer to check the dog out. For instance, we have a dog already who was trained in a prison program. She is a fantastic dog who learns really quickly but I could not use her as a service dog not only because she is too old already, but because she was abused and is very anxious. Her anxiety makes her very scared in certain public situations, causes her a lot of stress in the car, and when I am manic, she hides from me, so she would not be able to help me when I needed her.
5. Start training, realizing it will probably take two years and if it does not work you have made a commitment to still keep your dog as a member of your family. 
6. Love your dog and create a great relationship with him or her.

Rosie, Psychiatric Service Dog in Training

Blessings,

Rev. Katie