Paul is the piano player for The 5th Dementia, a band made up of people living with Alzheimer’s, Parkinson’s, dementia and neurological brain injury. The 5th Dementia rehearses twice weekly with occasional gigs around Los Angeles. Paul has had Alzheimer’s disease for the last 9 years.
Paul plays piano by ear so if you hum the first line of a song, he squints, reaches into the depths of his music-box brain, gives a knowing nod, and starts playing the song flawlessly.
Paul’s wife, Marina, is the behind the scenes caregiver/magician. Every morning, she writes down both her and Paul’s schedules on a large pad in their kitchen, a routine that has been set for years. Paul and his caregiver, Alan, check the pad each morning. Marina thinks part of the reason that Paul has done so well living with Alzheimer’s is due to this routine. There is safety in the knowledge that he will be spending his day with people he knows and trusts while playing the piano, a love ingrained in his heart.
Marina is firm in her conviction that she cannot do this alone. She says there was no shame in letting friends and family know about Paul’s Alzheimer’s immediately after his diagnosis. Paul is grateful for this openness because longtime friends and family have helped to keep the much needed rhythm and routine in his life. Sharing about his Alzheimer’s relieved the pressure of having to hide it away. Maybe most importantly, Marina credits Paul’s continued good nature and happiness with playing music with his community of friends in The 5th Dementia band.
Marina, a successful artist, says there needs to be joy of some kind for both people in a relationship. For Marina, she finds joy in her art. I visited Marina at her art studio where she showed me several projects she’s installed this year. The common thread, throughout her uniquely personal and thoughtful pieces, was time.
There is a large metal garage door on the parking lot side of her studio which Marina has painted white. From the very top of the door (still not sure how she got up that high) to the bottom, she has strategically placed little boxes wrapped with the pages of days from Paul’s schedule pad in their kitchen. The boxes are moveable. At the very bottom, on the floor, sits a wooden box of Paul’s childhood toys. I will leave you to figure out (as she made me) how she attached the boxes to the garage door. Marina will tell you that this installation represents Paul’s time with Alzheimer’s and the seeming regression back to childlike behaviors and sensibilities.*
Marina’s past work as a nurse and psychologist has helped her in figuring out how to navigate Paul’s alzheimer’s in a kind and loving way. She looks out for him. She has his back. The “recipe” she has cooked up has led them both through the shadow of Alzheimer’s, a trip she says she wouldn’t wish on anyone, but one that has ultimately led to a place where they can both still find joy alone, in their marriage, with family, friends and community.
Come witness the joy and happiness that music and Paul’s piano playing brings to The 5th Dementia every Monday and Thursday at the Brentwood Presbyterian Church from 1:30 - 3:00 pm. Maybe you’ll even sing along with them.
* Marina’s gallery will be showing her work at the 18th Street Arts Center Gallery 1639 18th Street in Santa Monica from March 29th - April 15th.
This article was written for Maria Shriver's Women's Alzheimer's Movement (WAM) website by Serene Meshel - Dillman