Suddenly, things like getting to work on time, sleeping through the night, going to a movie on a whim and even exercising went from habits... to rare luxuries. I was thrown (off a third-floor balcony) into not just the role of full-time caregiver, but spy in charge of uncovering the mystery of missing perishables, money, beer (she liked beer!), eyeglasses, hearing aids, jewelry, T-shirts, etc. It was also my job to hold Gram's hand every time she rediscovered her husband was dead. This happened monthly, sometimes daily. And, I was in charge of "keeping Gram's clothes on." She seemed to put 'em on and take 'em off at the most inopportune times. And doors? She didn't even know they were there anymore. When she did dress herself for the day, she often had a thing for my stepson's clothes. You should've seen her sport an Abercrombie & Fitch T. It was hilarious. They should consider broadening their demographic.
For the first year, I played the role of the lowly hermit, thinking, surely I must have been a bank robber or auditor for the IRS in a past life to be trapped in this stranger-than-fiction scenario. Then one day it hit me; it was time to reach out (and also do some damn yoga). Now, this is going to sound like I'm poorly paraphrasing the Dalai Lama, Deepak Chopra or Anonymous himself, but if you don't take your own happiness seriously, it's impossible to create a harmonious environment around you. So, "adapting" became the new plan of attack against this incurable illness. By 2009, after two near escapes, four lost hearing aids, several unsuccessful adventures in anti-depressants (my adventures) and more fights over the debate of "to bathe or not to bathe" than I'm capable of counting, creating a safe, fun and content environment became the only solution to successful survival.
So, finally, I hired a part-time caregiver; incorporated a date night; and prioritized practicality over aesthetics in my home. I called it, The Alzheimer's Friendly Joint -- with our three baby gates, a dozen night lights and child safety locks on all exterior doors. And the "joint" also became riddled with signs:
"Bathroom This Way"
"Please do NOT feed the dog. He Will Die."
"Gram, I will be back in 5 minutes. Love, Lisa"
"No Beer Cans in the Microwave. Thanks"
"Gram, your little boy is NOT lost, he is safe with me. Love, Lisa"
These simple changes saved everyone's sanity and the life of our tea cup poodle, Beau. (You're welcome, Beau.)
Through it all, I still managed to write like a mad woman, but now my words had purpose. In fact, our story, the memoir, As Nora Jo Fades Away, gave us both purpose. Incorporating my gram into that process also gave her a real sense of value, something that was slipping away with her memory. We became deeply involved with our local Alzheimer's Association, too. At age five, my daughter, Jazz, was their youngest volunteer "on the books." Last year, I was lucky enough to go to Maria Shriver's March Against Alzheimer's in Long Beach, California. I came back with so much energy (could have been the break!), that I started interviewing Gram and filming us. 14 DAYS With Alzheimer's was the result of that new adventure. The documentary has been in over a dozen film festivals across the country and incorporated into several universities' medical programs, including Columbia's, since its August 2011 completion.
This illness has opened my eyes and heart to a world that was previously foreign. I'm over seven years in and still a pup, a newborn looking on in amazement and sadness by the oddities of dementia-related illnesses. There are days when I still curse and cry, but truth be told, I've always been a bit of a potty mouth and a drama queen, so that might just be me.
Thanks to my gram, I now communicate through books, blogs, film and speaking engagements to the growing community of caregivers in this world who feel alone. I finally "let go" and found freedom in compassion, and realized, I was merely honoring a woman who was my idol, my Oprah. All I did was "pay it back." We (caregivers) remind our spouses, siblings, parents and grandparents of who they are, or were, just by being there for them, whether they know our name or not.
Joy is the ultimate feeling of success. Joy for me was caring for her. She woke up every morning for three years safely in my home, and with a joyous grin she'd say, "Good morning, Lisa. Good morning, Pete. Good morning, Jazz. Good morning, Bart." And okay, so my stepson's name is not Bart, it's Brock, but three out of four wasn't bad!
My daughter, Jazz, finds joy in drawing, dance, puppies, destroying every lipstick I've ever purchased and opening doors for the elderly. My husband has ESPN, exercise, the kids and cooking. My stepson, Bart/Brock plays guitar, basketball and did a stellar job of "grinning and bearing it" when Gram went off on a rant every time she caught him eating (yes, eating). And he's 6'6," so he gets hungry. Yet, she could never figure out why this Bart guy kept hanging around the kitchen and "taking" all our food.
My gram lost her son, her husband, her home and her mind. But she never lost us. Not even on "shower day," when she really, really wanted to, there we were... taking care of business.
Lisa Cerasoli is the author of On the Brink of Bliss & Insanity and As Nora Jo Fades Away, with foreword by Leeza Gibbons, and the director of "14 DAYS With Alzheimer's" (a 29 minute documentary short). Check out You Tube Channel: LisaMarieCerasoli for the movie trailer.