Lauren With a Side of Lewy December 2019
by Lauren U,
PAC Core Team Member
Every month I struggle to find a topic for my article. This month I decided to write about the struggle.
What is there for me to say? I'm not an expert at anything anymore. Gone are the days when I had a PDR in my brain. Gone are the days of going to work and feeling confident and competent while making a difference for my patients. Gone are the days when I could get lost in my studio, working for hour after happy hour creating art. Gone are the days of playing guitar. Gone are the days of driving a car, riding a horse, and maintaining independence.
I take care of the dogs, do the laundry and the dishes, and can use the microwave. I usually know how to access zoom meetings. Every so often there are PAC zoom meetings that I attend. To be fair, I spend almost the entire time moving my cursor over the little video squares of participants. Each time I move the cursor the light show changes. There are too many words to follow so I amuse myself by creating different patterns of light. I make the bed but Frosty kicks the pillows and blankets around to her liking, which means the bed gets very messy right away. We do it every day. I make the bed, she unmakes it. Futile. Every day.
I wait for the next thing to happen. I go to market with Eddy. Twice a month I visit with my little girl friends, aged 9 and 12. I wait for the next PAC event that I will attend. I wait for what may not happen. I wait for the surprise that may never come.
If I think about what I really want in my life, my initial reaction is that I want it all. I want it all back, my work, my art, driving, horses, independence. But really, I know I could not handle it all. My daily routine for the past couple of years means spending hours alone, in bed, thinking about safety, privacy, bugs, and tracking. I need a lot of reassurance and ask for it when I can.
Soon, in less than a week from now, I will travel to the conference to be with many of my favorite PAC people. I will be out of bed for hours. I will get some great PAC love. I will eat way too much sugar. I will not struggle.
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!