Alzheimer’s Stories: Waltz with My Mother, by Jonatha Brooke

The premiere of You’re Looking at Me Like I Live Here and I Don’t is this Thursday, March 29 (check local listings). Beginning today, we’re presenting stories about Alzheimer’s from our staff, friends, and viewers.

Darren Stone Nelson and her daughter, Jonatha Brooke

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, or check her out on iTunes.

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.

Singer-songwriter Jonatha Brooke, 2012

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.”

To read more of Jonatha Brooke’s reflections on her journey with her mother, visit her website.

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  • Alyson Prevost

    Wow… This made me laugh, cry and just think of my own experiences with my stepdad. He has Picks disease, which is a type of Dementia, sorta like Alzheimer’s. Oh he can fool people with his charm and whit, but behind our closed doors, where he’s safe, he lets his guard down and he reverts back to being a scared little boy. At times you don’t know if you want to laugh or cry with him! One minute he can say the meanest and most hurtful thing, then the next second look up and say I love you Perv! And that I’d my most embarrassing nick name he came up for me… Don’t ask, I have no idea where it came from! Lol it’s better though than what he calls my mother, Catfish! He was in the Navy, so strong, so intelligent, an amazing athlete, handsome, took great care of himself… Now we’re lucky if he bathes once a month, he’s forgetting a lot more and he naps throughout the day. He’s on so many antipsychotics, enough to kill an elephant his doctors say… Even though I don’t recognize the man he is, every now and then the old “Genedaddy” will come out and I’ll think, “Ah! There is is! I found him again!” and while I don’t always recognize him, I ALWAYS see my hero.

  • Roka Walsh

    My heart swells with your story. My mother, too, had Alzheimer’s. It is most heartbreaking to watch our mother’s disappear and reappear, only to disappear again… bit by bit. What an amazing gift you gave one another. You are so very blessed to have had this time with her, and she with you… to reconnect at that “molecular-level”.

    I’ve loved your music since the first time I heard you and loved seeing you for the first time at the WOW Hall in Eugene. Music helped to pull me through those long years of her illness with yours at the top of my listening-list. She was very far away and I only saw her in visits. We were never close, but it was during those visits in her lucid moments, that I felt more connected to her than I ever had.

    Blessings to you, Jonatha.

  • Barbara

    Beautifully told …

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  • Kristi S.

    Love this!!!

  • Jordy Walker

    Perhaps she was aimed as well…to be your mother and to give that love. You’re a beautiful girl. Thank you for sharing such a beautiful story.

  • Hernapa55

    I have been a fan of Jonatha since forever, back to The Story days and have seen her live three or four times. Her essay about her mother is beautiful. My 90 year old father died in June 2010 from Alzheimer’s. I moved him and my mom up to No California and we kept him at home through out his last years and he died slowly but peacefully with my mom in bed beside him. We laughed as much as we cried during and after. Now I have my 89 year old mother who does not have Alzheimer’s but has not and will never be the same after going through what she did with my dad. It was so sweet and sad with my father and is now sad and sweet with my mom. Not many people choose to care for their family at home, it is incredibly wonderful and incredibly exhausting. Jonatha, thank you for sharing this with all…

  • Tess810home

    I connected so strongly with this. My mum is in late stage Alzheimer’s and I provide one to one care for her also. I spend 24/7 with mum now and have learned too much about this disease and have discovered a depth of love for mum that cannot be described. We have always been close, but this past year has deepened our bond, rather than test it. It’s true she doesn’t know me most of the time, even so, I know that I would take a bullet for her and I know she, in good health would have done the same for me.

    I have become the mother, and she the child. It is for me now to provide comfort and some sense of security. It is the best and the worst time of our lives.

  • Sheila-h

    Jonatha,
    You have always been an angel with a beautiful soul. this is so much more apparent in the way you treated, respected, and loved your mother into death. If nothing else brings you comfort, this piece of your life shall shine forever.
    Love and always thinking of you,
    Sheila Horowitz

  • Mary Crescenzo

    Thank you for this important film. Check out the play, Planet A, on this same subject matter where the patients’ points of view comes through.
    Mary Crescenzo

  • okayjanay1

    I have been a longtime fan of Jonatha Brooke. Her music has touched my life in deep and wonderful ways. The generous act of sharing her journey as caregiver/daughter via her blog has deepened my affection for her…..her wit abounds….eloquent, insightful and heart wrenching. I will watch this broadcast and look forward to each and every endeavor of Jonatha.

  • Amy B.

    Wow. After all you went through, you know now that you did it right. You have an intuition, you just knew how to handle it. Most caregivers argue with the patient when they say there are trains on the ceiling, but your instinct was right on. And how heartfelt and moving it was to accompany you on your hard journey through your incredible blogs. Poignant, compassionate, FUNNY, moving and loving, and cumbersome and complex and impossible. You are my hero, Jonatha, and I study this disease for my profession! You are the model caregiver that all Alzheimer patients would be so lucky to have. Thank you for sharing your incredible journey with us.

  • Al

    Jonatha, Thank you for sharing who you are and for being who you are. I know how your soulful words have touched my life at critical junctures, including my brother’s death from complications of a double-lung transplant. Your music connected me to my past, my brother and daughter to each other and to belief in life beyond. No mean feat. And that means I have your mother to thank too.

  • Judy

    I also lost my mother earlier this year. What this horrible disease gave me is the same thing you discovered – the deepest and most unconditional love I have ever had for another human being. The kind of love where you wish she could stay forever but because she is trapped inside a non-functioning body you will let her go and be free. I miss her so much, I took care of her at home and when she had to be placed I took care of her there. Even when she was in the last stage of the disease, when I would kiss her hello she would keep her lips pursed for more kisses. I gave her every kiss she wanted because I knew one day soon I couldn’t do it anymore.

  • Gomer Pile

    And after two years, helping with her pledge, two wonderful years of reading her long journey thru her personal journals, a once in a lifetime Skype concert with her singing in person and 3000 miles from California to New York City ‘and’ upon the last night before I finally see her play ‘My Mother has Four Noses’ on 42nd Street at the Duke…I find this article, this last sign post before this long awaited day, that I am once more flooded, by this chance find, this wonderful article, to reminisce on the love and the hardship I feel about loss of a love one, the dementia I once felt and witnessed as a young boy, that even in the harshest time of confusion…everything will be ok, and that those lost moments are found once again. I will always remember tomorrow, Jonatha and that love with her mother. I will remember my uncle, my time with him once again as a man nearing his own loss and will wipe away my lonely loss of memory with her lovely songs and forever remember what our loved ones give to us at our weakest times. Unrelenting clarity of love in the face of confusion shines through… Michael Leary