Beginning today, we’re presenting stories about Alzheimer’s from our staff, friends, and viewers.
Singer-songwriter Jonatha Brooke cared for her mother (a gifted poet and writer, as well) for more than two years as they traveled the strange and unpredictable path of Alzheimer’s disease together in Brooke’s New York home. Her mother died earlier this year. Brooke was kind enough to offer this very personal perspective on Alzheimer’s for Independent Lens, as the first in a series of stories from our viewers about coping with the disease. We also created a special Spotify sampler of Jonatha Brooke’s music for the uninitiated.
Waltz with My Mother
by Jonatha Brooke
I moved my mother to New York in the fall of 2010. She was entering the mid stages of Alzheimer’s disease. She was lost, lonely. She had fallen twice that August. The directors of her independent-living facility were subtly hinting that they could no longer keep her safe.
I didn’t know how I would pull off caring for her. I just knew I had to. No one else was listening, and no one else was willing. We are connected in that deep and torturous way that only mothers and daughters can bear. It is one part barbed wire, and two parts that lyrical, mystical waltz – unconditional love.
We had an adventure on quite a grand scale. Dementia is no meek beast. My mother has always been dramatic, but there were times when she took her own particular theatre to a new level. She had so much pain, physical and existential, some days I was just guessing at how to handle the crisis at hand.
But I would try to meet her wherever she was. If she said there were trains running around the ceiling, I would ask her where they were going, and could I get a ticket too. If she was convinced she hadn’t eaten in three days, (right after lunch) or that she hadn’t seen me in two months (right after we’d spent hours together talking about her poetry) I just got her some ice cream and said, “Well, I’m here right now, and I love you so.”
She would almost always rally, even until the very end, if she could simply make us laugh. She would sing the “cream of wheat” jingle, gesturing with grand sweeps of her arms. She would make up plays and songs — mostly nonsensical, always clever — on the spot, and often perfectly rhymed. She loved punning, her word play and vocabulary were unparalleled:
“Jonatha’s got French down pat” she would boast to Julie, my best beloved caregiver (she loved to speak French with me). Then, “Come to think of it, Jonatha’s got Pat down French too! GOTCHA!” (My husband’s name is Patrick) Her deep laugh was contagious.
There were hellish, awful, despairing times for both of us. I shepherded her through two surgeries, juggled all the complications of medication, protected what was left of her money, fought with and pleaded with Medicare, Medicaid. I trained caregivers, coddled family, interpreted doctors.
What remained constant even in the darkest of dark hours, was our molecular-level LOVE. I never knew how much I loved her until now. I never knew I could love so fiercely and desperately. It is an awesome love, this particular love — it is “I would take a bullet for you” love.
This was her biggest gift to me, and the gift of our time together. She, even given a horrible father, a jerk of a brother, a lifelong search for identity, multiple physical challenges, depression — SHE somehow endowed me with an unshakable sense of possibility, self-worth, of being absolutely and unconditionally LOVED. She would tell me, even as a confused and sobbing teenager, “You were aimed from birth.” Over the years, she was always thrilled to hear about what I was doing, always proud of my career, proud of me.
Just a week before she died, she looked up at me and said, “You are getting more and more beautiful. I do love you so. I feel as if I have 100 years of talking with you and coming and going….”
How many daughters are that lucky?
I truly believe that even in the muddle of her dementia, she made a decision, and slowly but surely engineered her last performance, her last exit, because she so loved me. She knew on some level the toll her care had taken.
I am still not sure how I am, now that she’s gone. As much as there were times I longed for “this to be over,” – for my “real life” to resume, and as much as I had been so “prepared” so many times for her death – I wasn’t ready. And taking care of her was the most real life I’ve ever had.
Mom would always say, when she had cracked me up with some cockeyed new dialogue, “Oh Jonatha, that’s good! Are you getting this down? You know, we should make a play out of this!”
And I would always say, “Yes Mom, every word.”