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
Wednesday, May 14, 2014
Sunday, March 23, 2014
Movie Review: Alive Inside
Today at the Cleveland International Film Festival, I saw Alive Inside, a documentary about the Music and Memory project. The movie follows three years of Dan Cohen working tirelessly to bring iPods to dementia patients living in nursing homes.
Social worker Dan Cohen noticed that if he gave a person with dementia access to music, in specific music that they like from their past, they come alive. People who only sat slumped over in their chair and never talked, sang with the music, danced in their chair and were even able to recount memories from their past that the music reminded them of.
Cohen wanted to get an iPod to ever person with dementia living in a nursing home and thought that with the amazing transformations of these people and how the music drastically improved their life, that this would be an easy task. However, he had the same problem as we have found in the work we do, non-pharmacological interventions are not supported by the medical community.
It was not until a clip from the movie was shared on Redit which went viral did Cohen get the national exposure he needed and he finally received a grant to bring personalized music to nursing home residents. His program has been expanding and at the end of the movie, Cohen has a few stories of people who live at home with dementia and benefit from the iPod program.
I have been following Cohen's amazing work because our foundation, the Carolyn L. Farrell Foundation for Brain Health, would like to get iPods with personalized playlists to all of our clients living at home with dementia and mental illness. We hope one day to receive the Music and Memory training when it is able to be provided to organizations who work with people in their homes.
Watching in the movie how residents with dementia responded to the music was amazing. You really can not get an understanding of how important the personalized music is unless you see it. Below is a clip from the movie, a clip which I have been showing at most events where I speak to people about dementia and how the arts are used in treatment and work better even than medication. In fact, in Alive Inside, a doctor who works with Aricept (most commonly used drug for Alzheimer's Disease) said that he has seen no medication work as well as the music does in helping people with dementia.
I also feel that this movie is one of the most compassionate understandings of good dementia care that I have ever seen. Alive Inside challenges the current ways in which we currently care for our elderly. We care for them with a hospital model, overly medicated, with all of their choice, dignity, joy, personality, and soul taken away from them. The movie shows how we have access to simple things, such as music, which can dramatically improve quality of life, and yet the medical model makes it nearly impossible for those of us using the arts to care for people to even get our programs and resources to them.
This movie explains why I do the work that I do both with people with dementia and mental illness. In the movie is the extremely powerful story of Denise who has bipolar schizophrenia and how the music not only calms her but brings meaning and purpose to her life. I often help people with mental illness create their own playlists to manage their illness. I use music in my treatment program for my own bipolar disorder.
Alive Inside also talks about the tipping point we are reaching in America around dementia. The amount of people with dementia is rapidly growing and we do not have the resources in America to pay for care, especially not care in an institution. Programs like Music and Memory, and the art programs we provide, can help people live well with dementia in their home and greatly decrease the cost of dementia care for our nation. It is imperative that we learn how to properly care for people with dementia if we are to ever have a chance of taking care of our seniors ethically.
When I see a person with dementia, who is agitated and non-responsive become talkative, happy, and engaged when we work on an art activity together, I know we need to get these resources to every person with dementia. When I help a person in the middle of mania calm themselves through a carefully chosen playlist of songs, I know we have to find a way to make sure everyone has access to the healing power of music. We have so many ways to help people living with dementia and other illnesses of the brain yet it is so hard to get these resources to those in need.
To see someone get in touch with their inner selves, find their soul, and be called back to who they are from the depths of their illness is one of the most amazing experiences.
I encourage everyone to watch this movie if it is showing in your area. Learn how music can drastically improve dementia care. Challenge the assumptions that people with dementia are lost and do not deserve dignity and respect. When we start to understand how important these arts based forms of care are, then we can work together to make sure ever person living with dementia has access to them.
Blessings,
Rev. Katie
Social worker Dan Cohen noticed that if he gave a person with dementia access to music, in specific music that they like from their past, they come alive. People who only sat slumped over in their chair and never talked, sang with the music, danced in their chair and were even able to recount memories from their past that the music reminded them of.
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| Alive Inside Kickstarter Campaign |
It was not until a clip from the movie was shared on Redit which went viral did Cohen get the national exposure he needed and he finally received a grant to bring personalized music to nursing home residents. His program has been expanding and at the end of the movie, Cohen has a few stories of people who live at home with dementia and benefit from the iPod program.
I have been following Cohen's amazing work because our foundation, the Carolyn L. Farrell Foundation for Brain Health, would like to get iPods with personalized playlists to all of our clients living at home with dementia and mental illness. We hope one day to receive the Music and Memory training when it is able to be provided to organizations who work with people in their homes.
Watching in the movie how residents with dementia responded to the music was amazing. You really can not get an understanding of how important the personalized music is unless you see it. Below is a clip from the movie, a clip which I have been showing at most events where I speak to people about dementia and how the arts are used in treatment and work better even than medication. In fact, in Alive Inside, a doctor who works with Aricept (most commonly used drug for Alzheimer's Disease) said that he has seen no medication work as well as the music does in helping people with dementia.
I also feel that this movie is one of the most compassionate understandings of good dementia care that I have ever seen. Alive Inside challenges the current ways in which we currently care for our elderly. We care for them with a hospital model, overly medicated, with all of their choice, dignity, joy, personality, and soul taken away from them. The movie shows how we have access to simple things, such as music, which can dramatically improve quality of life, and yet the medical model makes it nearly impossible for those of us using the arts to care for people to even get our programs and resources to them.
This movie explains why I do the work that I do both with people with dementia and mental illness. In the movie is the extremely powerful story of Denise who has bipolar schizophrenia and how the music not only calms her but brings meaning and purpose to her life. I often help people with mental illness create their own playlists to manage their illness. I use music in my treatment program for my own bipolar disorder.
Alive Inside also talks about the tipping point we are reaching in America around dementia. The amount of people with dementia is rapidly growing and we do not have the resources in America to pay for care, especially not care in an institution. Programs like Music and Memory, and the art programs we provide, can help people live well with dementia in their home and greatly decrease the cost of dementia care for our nation. It is imperative that we learn how to properly care for people with dementia if we are to ever have a chance of taking care of our seniors ethically.
When I see a person with dementia, who is agitated and non-responsive become talkative, happy, and engaged when we work on an art activity together, I know we need to get these resources to every person with dementia. When I help a person in the middle of mania calm themselves through a carefully chosen playlist of songs, I know we have to find a way to make sure everyone has access to the healing power of music. We have so many ways to help people living with dementia and other illnesses of the brain yet it is so hard to get these resources to those in need.
To see someone get in touch with their inner selves, find their soul, and be called back to who they are from the depths of their illness is one of the most amazing experiences.
I encourage everyone to watch this movie if it is showing in your area. Learn how music can drastically improve dementia care. Challenge the assumptions that people with dementia are lost and do not deserve dignity and respect. When we start to understand how important these arts based forms of care are, then we can work together to make sure ever person living with dementia has access to them.
Blessings,
Rev. Katie
Wednesday, March 12, 2014
Dementia Care Partners
Usually when we talk about caring for another person, we use the term “caregiver.” However, the term many of us in the caring community like to use now is “care partner.” I love this term because it means that both the person who is being cared for and the person doing the caring are partners in the caring relationship. This means both of them gain from being in the relationship.
In their new book, I Care: A Handbook for Care Partners of People With Dementia, Jennifer Brush and Kerry Mills define a care partner in this way:
"When someone takes care of someone else, we call him or her a caregiver. This is a natural title and one we all understand, however, when we use this title to identify a person who provides care to a person with dementia, we are missing an important part of the equation. You see, there is nothing left in this title for the person with dementia to contribute. By referring to these people as a “care partner,” we are recognizing their contribution as a partner. With who are they partners? These care providers are important partners for the person who has dementia. This means that they are not only giving, but also receiving; the same as the person with dementia. This is the first step to changing your perspective. This also means, you, the care partner, need to prepare yourself to receive as well." (Brush, J. & Mills, K. (2014). I Care. Balboa Press.)
As my Dad, Dr. Charles Farrell says, which is shared in Brush and Mill’s book, I Care:
“In the past two years we have moved into the magical, mystical, intimate, Silent World of Dementia. This is truly a wonderful place. Our home has become quiet. At night it is essentially silent. I sleep in a small bed next to Carol and frequently we awaken at the same time. I care for her physical needs in silence. We then move close together, I place my arm around her shoulder and my head on her chest and feel totally relaxed. I feel her breath as I count her respirations and feel her heartbeat. If Carol is anxious and fearful our vital bodily functions are out of synch. As we simply lie together, we become closer and closer together and finally truly become one. We are as much in love today as we have ever been in the last 50+ years.
Dementia has not robbed Carol of her personality and it has not robbed us of each other. We have simply become Partners.”
"When someone takes care of someone else, we call him or her a caregiver. This is a natural title and one we all understand, however, when we use this title to identify a person who provides care to a person with dementia, we are missing an important part of the equation. You see, there is nothing left in this title for the person with dementia to contribute. By referring to these people as a “care partner,” we are recognizing their contribution as a partner. With who are they partners? These care providers are important partners for the person who has dementia. This means that they are not only giving, but also receiving; the same as the person with dementia. This is the first step to changing your perspective. This also means, you, the care partner, need to prepare yourself to receive as well." (Brush, J. & Mills, K. (2014). I Care. Balboa Press.)
As my Dad, Dr. Charles Farrell says, which is shared in Brush and Mill’s book, I Care:
“In the past two years we have moved into the magical, mystical, intimate, Silent World of Dementia. This is truly a wonderful place. Our home has become quiet. At night it is essentially silent. I sleep in a small bed next to Carol and frequently we awaken at the same time. I care for her physical needs in silence. We then move close together, I place my arm around her shoulder and my head on her chest and feel totally relaxed. I feel her breath as I count her respirations and feel her heartbeat. If Carol is anxious and fearful our vital bodily functions are out of synch. As we simply lie together, we become closer and closer together and finally truly become one. We are as much in love today as we have ever been in the last 50+ years.
Dementia has not robbed Carol of her personality and it has not robbed us of each other. We have simply become Partners.”
Below is a fantastic video of care partners, with Bill sharing the story of his wife Glad who has Alzheimer's. Their story sounds so much like my Mom and Dad's. Dad even used to bike with Mom on a tandem stationary bike to help with the Parkinson's symptoms of Mom's Lewy Body Dementia. Dad would love this bike in this video and I wish we could find one.
Get out a tissue, this video will make you cry:
Blessings,
Rev. Katie
Get out a tissue, this video will make you cry:
Blessings,
Rev. Katie
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