Brains Can and Do Malfunction -- Experiences with Lewy Body Dementia

I have to share with you something that has been on my mind since it aired. Last week this Interview with Robin Williams' wife was released. 

I am so sad for her and for his family. I feel so sorry that they suffered this loss. I can empathize completely. I am praying that because such a high profile person died as a result of Dementia with Lewy Bodies there might finally be more awareness and help for those affected by it. 

Thank you Diana Kleven of Lifelight Image Photography for this beautiful photo of my mom.
My mother died almost a year and a half ago. I told very few people about the exact term of Lewy Bodies, because I didn't want to have to explain it. I just kind of thought dementia is dementia right? What does it matter? But, when it's someone you love, it matters... 

Our family (my dad in particular) can attest to the horrors of this brain disorder. Then, pair it with Parkinson's disease (which it is "common" to have both); it just makes for a heartbreaking combo.  

Just a few things that our family can relate to in this interview:

* The misjudging of distances and getting injured. My mom took a couple of falls, one resulted in a trip to the ER.

* The extreme fear and paranoia. I remember when my mom came over to visit, and she was constantly looking out the window. She was very worried that the parked cars were spies. She was often worried about spies and people that were out to get her. I would get calls from dad just because she was worried about us and wanted to make sure the grand kids were okay. 

* Sleeping in a different room from the spouse. People with DLB also tend to have sleep disorders and are very active sleepers. Could you sleep with that? I couldn't... which is why my kids never sleep with me either.

In my mom's case, she feared for her safety. She developed Capgras Syndrome:
"Capgras Syndrome, also known as Capgras Delusion, is the irrational belief that a familiar person or place has been replaced with an exact duplicate — an imposter (Ellis, 2001, Hirstein, and Ramachandran, 1997).Feb 21, 2013"

She truly believed that my dad (and there were multiple versions of my dad) was going to harm her. Therefore, she needed to sleep alone. I'll never forget the time she called me wondering where my dad was. She needed a ride home from a meeting (which she was totally at home). I asked if there was anyone there with her. She said, "some guy that says he's Dad, but isn't." I asked if I could talk to him. So, my dad and I conversed. I got back on the phone and was able to convince Mom not that this was truly Dad, but that I trusted this guy with her life. 

What the interview didn't mention, but Robin and his wife may have been dealing with is the hallucinations and voices. Mom would go to the door, open it and talk to "the people" outside. I remember her talking to a potted plant one time as if it was a little child. She often talked about the other people with us in the room.

One thing that is nagging at me are some comments about Robin's suicide, and well, anybodies suicide, I guess. Comments about this just being his choice to avoid God's natural plan, or suicide being completely selfish and not thinking of their family and friends, or people always having a choice. Here is what I think:

I really believe that Nobody in their right mind would kill themselves. 

See that? Right mind. Clearly, Robin was not in his right mind. Don't underestimate the power of the brain. We celebrate the power of the brain when it comes to the positives -- inventions, business plans, world changers, child prodigies. We awe and wonder at how the brain can achieve such great things and are completely okay with unanswered questions about intelligence. But, I have witnessed the power of the brain to completely change someone. The brain can and does malfunction, just like your back or your kidneys or your liver, or your appendix. 

Stepping off my soap box now.

My dad a.k.a. my hero, kept a journal throughout the entirety of Mom's illness. Because there is VERY LITTLE out there about the experiences of caregivers dealing with DLB, he is working on publishing those journals with other commentary. I guess this interview has renewed our vigor in sharing.

I'm asking that you don't comment on the suicide debate; that's not what I want to be the focus of this post. Let's encourage each other! 

Let's recognize and honor those (high profile or just "regular") people that have battled great battles and made us (as a culture or as individuals) more aware of some type of condition.

Obviously, I honor my mom, who not only battled the Lewy bodies, but also, colon cancer, both with grace and dignity.

10 comments:

  1. I have always loved your family - every member of your family. Your dad still to this day is one of my favorite teachers :)

    The fact that you are willing to share these struggles with us is inspiring!

    Love you Chris(sy) Adams Rambo!

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    1. Awe! I feel the same way about YOUR family! Thank you for reading and for you encouragement.

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  2. This is such a sweet and thoughtful post

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    1. Thank you, Laura! I'm thankful for you who was with me in the midst of this struggle!

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  3. This brings to mind my Grandma's struggle with dementia and the horrible and powerful things the brain can do to someone -- a completely cruel disease and one that can be so isolating for families and caregivers. God bless your mother's memory, and thanks for sharing. xo

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    1. Thanks for reading, Katy. You described it perfectly... cruel and isolating. I know that my Dad, especially felt isolated. A few times I came to relieve him just so he could get errands done; I also remember him missing intelligent conversation. So hard.

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  4. Chris, thanks for doing this. Can I use a few thoughts/statements in the book?
    Love you so much,
    Dad

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  5. Thank you for sharing. What a cruel disease, indeed. My grandma suffered from dementia and I often thought about how much this type of disease affected people...kind of like a ripple effect. It obviously affects the person diagnosed, but caregivers, family and friends feel the strain of diseases like this for a long time. It's hard to watch someone you love change into a person that you struggle to know or understand.
    I like this blog, by the way. Thanks for keeping it real.
    Amy

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  6. Thanks so much, Amy. You nailed the description of the ripple effect. I'm so glad you have been following along -- keepin' it real is the goal : )

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