Monday, October 11, 2021

Our Lewy Body Dementia Journey

 3 minutes of your time: October is Lewy Body Dementia Awareness Month. This is our LBD story. 


Many LBD patients die as a result of falls or aspiration pneumonia. In his last year, Buddy suffered several falls and choking episodes. With respect for privacy of Buddy and the kids, I only shared small glimpses into his LBD journey. This time last year he became very sick and was admitted to the hospital with sepsis due to aspiration pneumonia. One of the things LBD steals is one’s ability to swallow properly. While in the hospital, he had a permanent feeding tube placed and came home from the hospital on Hospice care. He passed away three months later. 


When Buddy died earlier this year, we shared the “good” memories and photos. We felt like we could finally grieve the man we lost years ago. It was hard to see pictures of what the disease did to him. It became increasingly difficult in the months following his passing to look at those pictures of him. 

In his illness, we often forgot who he was before the disease took ahold of him. Our strong and confident leader relied completely on us. We tried to maintain some normalcy and to make him happy and comfortable in his remaining time. But, we often felt lonely and isolated. I joined several LBD forums and we discovered the Respite program. Soon the isolation faded and we began to feel less alone.

Helping others and bringing awareness to LBD are things that bring some healing. While the memories and pictures of what this horrific disease did to Buddy, they are important because they tell a real and powerful story. 


*Facts About Lewy Body Dementia:

*It affects millions of seniors. 

*LBD is not Alzheimer's disease. 

*LBD is difficult to diagnose. 

*Medications and LBD can have adverse  interactions. 

*Parkinson's disease and LBD are very similar.

*LBD affects sleep quality. 

*Like most dementias, LBD is unpredictable. 

*LBD has no cure.

https://youtu.be/ovfvhsMjodA

Sometimes we struggle to understand the events of our lives. When life is difficult, how can we make sense of what doesn’t seem to make sense?



There are things in life that we have just accepted—difficult things, unfair things, tragic things for which we have no explanation. But the time may come when we’re forced to confront these questions. When troubles strike close to home, we may either accept the fact that we have no answers or perhaps come up with answers that may later be proved wrong. That takes us back to square one. Is it possible to find the answers we need?
Why do we face adversity no matter how careful we may be in life? Adversity sometimes enters our lives by circumstances beyond our control. Sometimes it comes because of our own mistakes or the mistakes of others.