Travels with Lewy: The Faces of Dementia

The Collage above was put together with great care by Daisy Vest. It brings a reality to the Dementia. The Collage is a small sample of the Lewy population. Most come to one of the 4 zoom meetings that are run by Curry Wisenhunt and Linda Ashcom Szypula. They run meetings where everyone is involved and encouraged to share their pluses and minuses of that day. There is much laughter and helping each other to get through to another day. I look at this collage every day. Today I was looking at it while listening to one of my favorite albums, The Stranger, by Billie Joel. The opening words are, “Well we all have a face that we hide away forever and we take them out and show ourselves when everyone has gone.” That line usually describes the face of dementia as well. We, as a group, are trying to change this idea. Our face is our face and they are the faces of dementia. We cannot deny that they are ours and therefor we cannot deny that they are also the faces of dementia.

Like Billy Joel’s The Stranger, the face of dementia also comes out when everyone is gone. During the activity when we are in a crowd, we do what is called showtiming. Where we put away the face of dementia and bring out what I call the Happy Face where people do not understand what we and our caregivers go through and that makes us both very saddened and depressed. When people hear the word dementia, they automatically think of Alzheimer’s which is a steady curve downward. Most other dementias have plateaus for a while and go down like steps. Lewy is the most strange, other than it chose me. The plateaus can actually be higher than the previous one. No other dementia goes down, then up, then plateau, then well you guess. This is the most frustrating component of Lewy, one day you can be climbing to a new plateau but when you wake up the next day, Lewy has decided to change course and drop onto a down slope. If I had my way, I would burn the masks of Lewy but that is another Billy Joel song for another day.

3 Replies to “Travels with Lewy: The Faces of Dementia”

  1. I think Brian, we are burning those masks, one at a time and lately collectively. Of course, we all wear a mask, no matter the reason. Maybe some of it is to hide what we or others perceive is unacceptable or broken. Just like an old shade that is cracked and torn, removing it allows the light to come in. For me and others, that is life changing.

    1. I was more referring to showtiming. When people say oh she/he looks great and they only see the Showtime.

  2. Brian you have explained this life we have so perfect and the the song so perfect. Ty for always doing what you can to help all of us. Enjoy your weekend !

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