From The Other Side

I recently had an opportunity to talk with an amazing, intelligent, loving, exciting and fun person, who just so happens to live with Lewy Body Dementia.

I want to share an experience and perspective from her, on something that we as care partners may see as a success, or overcoming an obstacle.

These are her words:

“I recognize that I have some weird habits.” We might say quirks.

“I know they are weird, but that being said, they are things that make me, me. They may seem weird to others, but they are things I don’t like to do, that in a sense, I may not have ever really liked, but now that I have Lewy, they are enhanced, or exaggerated. These are things that I try to avoid to keep me safe, to make me feel safe when I avoid them."

"These actions may actually be harmless, so others don’t understand them, but when I avoid them I feel safe. They can be surfaces, textures or shapes. There are areas I don’t want to step on.

People who spend time with me, get to know this, they observe it, when they are with me and,... I tell them, it is just what it is!”

"Here is an example,,,"

“I have a care partner who was trying to help me, she was wanting me to step on an area I don’t like to step on, and she has spent time with me, she knows,..she knows this brings me anxiety and makes me feel unsafe.

On occasion she guides me onto this spot and celebrates her success by saying “I got you to do it; I got you to do it!”

"I think she thinks this makes me feel good, like I overcame a fear or an obstacle that I was trying to concur, but that is not the case. I don’t want to step on it, I don’t need to step on it, I want to go around it and there is no want, or need for me to step on that spot. I want and need to feel safe and not stepping on it makes me feel safe. There is no need for me to step on this spot!"

“I have told her, “I really don’t want to walk there” and she knows I don’t want to walk there. “

SO,...

“Can I just tell you, “THE BIG STUFF IS HARD ENOUGH, just let the little stuff go!””

“I understand you may just be trying to be kind and helpful, and you are,... but this just brings unnecessary anxiety to my day that just doesn’t need to be there, when I have all this other stuff coming at me.”

So there you have it, how profound are the words from someone, living on the Other Side. We can glean, so much from getting their thoughts and perspective!

We at PAC, have had the pleasure of meeting an amazing woman, who has joined our team. Her name is Lauren U and she is dynamic, talented and full of spunk.

She has agreed to allow us into her world of experiencing her perspective and what it’s like to live on the other side of dementia.

Many of us don’t get the opportunity to hear the perspective from someone living with dementia.

Lauren has agreed to host a Facebook group, it will be an “Ask Lauren” type of group.

Here Lauren can share her thoughts and we can ask her what it’s like to be on the other side, so that we can respect what it may feel like for her and others living with brain change.

Be looking for this addition to Facebook, coming soon.

SEE YOU ON THE OTHER SIDE!