Lauren With a Side of Lewy – November 2019

Lauren With a Side of Lewy – November 2019 post page

Online Dementia Journal

By Online Dementia JournalNovember 22nd, 2019

Lauren With a Side of Lewy – November 2019

Attending the PAC Retreat

by Lauren U, PAC Core Team Member

What happens when 50 PAC people get together at a summer camp? So much! There were endless possibilities for learning, practicing, playing, laughing, and socializing. There were sweet reunions and exciting first time, in-person meetings. I met a lot of new people and I got to spend time with some of my closest friends. I tried to participate fully but did sometimes need to get away from the activity, noise, and exuberance. As usual, PAC took great care of me. My bed was close enough to feel safe and just far away enough from the activity to get my head together. The PAC noise is, by the way, happy noise. Still, I did need an escape and I was allowed it whenever needed. Never did I feel alone. Never do I feel judged. I joined in as much as possible and was always welcomed when I returned. My PAC family did not forget about me and checked in often, but not too much.

The dining hall was very loud which made it difficult to interact and focus. Mealtimes were opportunities to sit with and get to know new people. The downstairs meeting room was too dark and foreboding for me but with a little support I got through it. I preferred meeting in the same building where we slept. My mind was more at ease, my symptoms were less disturbing, and I generally felt safer and more comfortable.

What else happened? There were large groups, small groups, structured groups, and informal groups. People learned, shared, explored, and took their dementia knowledge to some new and some familiar places. There was cooking, crafts, campfires, and high ropes course. I got to spend time with my favorite PAC children. There were interactive activities and quieter moments, all designed to improve communication, skills, understanding, and relationships. My favorites? Relationships! Over time, I have formed strong bonds with some PAC folk. My husband Eddy trusts them fully. These people have stepped in as another family. I feel loved and accepted. I am encouraged to participate in life while still protected and guided in the areas I may need.

I was looking forward to the retreat for a long time. It has now come and gone and I had a great time. I got lots and lots of hugs. I ate lots and lots of sugar. I spent time with some of my favorite people on earth. Give me some recovery time and I'll be ready to play some more. I have noticed that everything is harder and more exhausting. My ability to push through has lessened. And I will do it all again for as long as I can. Take that, Lewy!

Lauren U is a member of the Positive Approach to Care (PAC) Core Team. She was a registered nurse with the ANCC Board Certification in Psychiatry for 30 years. Now she is the keeper of the frolic. Lauren has been living with Lewy Body Dementia (love how they add "with behavioral disturbance") for over five years. She currently lives in Northern California with her professor husband, Eddy. PAC agrees with Lauren – that she is delightful!

One Comment on “Lauren With a Side of Lewy – November 2019”

  1. Leslie Fuller

    How inspirational you are, Lauren! Thank you for sharing your perspectives and your determination.

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