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Making Sense of Alzheimer’s is a creative space for people to understand the past, present and future of Alzheimer’s disease. It is an evolving forum, a gallery of ideas, a museum without walls.

Jonatha Brooke: Making Sense of Alzheimer’s Through a Musical Play

Jonatha Brooke sat down with Jason Karlawish, MD to talk about her new musical play, “My Mother Has 4 Noses,” and her mother, the poet Darren Stone Nelson.  Described by the New York Times as a “haunted and haunting play with music,” “My Mother Has 4 Noses” is Jonatha Brooke’s mother-daughter love story, recounting Ms. Nelson’s descent into dementia and her family’s creative and poignant ways of managing her illness.


From Jonatha Brooke’s blog at jonathabrooke.com

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My mother had very distinct periods of obsession as Alzheimer’s slowly claimed her. As quickly as one had come and occupied, another would move in and take its place. To keep up, and to honor her changes, we would do our best to join her in each new “normal.” You can’t argue with Alzheimer’s.

For most of the fall of 2011, Mom was obsessed with the L. L. Bean Catalogue. She had lived for quite a while in Maine, and Maine IS L. L. Bean. Even when she was still living on her own, she’d jump at any excuse to make a whole day out of the trip to the L. L. Bean outlet store.

But that fall, – it was about a year after I’d moved her in with me in New York, – something about the neat pictures of slippers, stacks of flannel pajamas, 15 shades of pinpoint oxford shirts really reeled her in. The “free shipping” glowing from every page was the final ticket.

Anyone who came to see her got her pitch. “Now I want you to look through this L. L. Bean catalogue before you go. There are lots of sizes and colors, and… look…. FREE SHIPPING. Make sure you get whatever you need.”

She was very serious. So we went with it. Actually there was no alternative. She was on a mission!

My husband came up with the idea of creating order forms for her. Big type, orderly rows, simple choices. Mom was a poet and editor after all. Creating on her own had become too frustrating. But why not harness her instincts? She had latched on to these pretty pictures, the full pages of images and text, – no white space to fluster her. Nothing SHE had to compose. The order forms could be her new poetry.

Energized, mom spent hours and hours each day, working on her lists. She’d double and triple check with me, or Julie (my main caregiver, also my husband’s sister!) about whether we’d ordered yet. (One of mom’s enduring qualities was her concern that OTHERS be taken care of, whether it was having enough ice cream or a purple down vest) She would go to sleep in the evening, finally calm, comforted by this task well done.

We did order a bunch of things, but when the shipments actually arrived, she was unable to make the connection between what she’d done, and the new fleece-lined plaid shirt I was showing her. The whole joy was in filling in those order forms.

So we kept “ordering” – adding our wishes to hers. Everybody got in on it. My husband would ask her to order him some new slippers. The other caregivers were partial to the cashmere waffle hoodies. In November, one of her “real” poems was published in the “Christian Science Journal.” Amazing, as she hadn’t written anything new in over two years… but they’d found it in their archives of Darren Stone poetry. It was called “Genius.” I brought it to her in bed. She was having a cranky morning, and I thought seeing her name in print might raise her spirits. She rolled over slowly, looked at the tiny by-line set in glaring white space, and burst in to tears.

 

“Mom, what is it? I thought you’d love seeing your poem in the Journal. Published!” She was bereft: “But where are the sizes and colors? And I don’t see free shipping ANYWHERE.”


Jonatha Brooke has been writing songs, making records and touring since the early 90’s. After four major label releases, she started her own independent label, Bad Dog Records in 1999, and has since released seven more albums – her most recent, the companion CD to her critically acclaimed Off-Broadway show “My Mother Has Four Noses.”

Jonatha has recently co-written songs with Katy Perry for her new album PRISM, and with The Courtyard Hounds for their current release. She’s written for four Disney films, various television shows, and composed the theme song for Joss Whedon’s Dollhouse.

Ms. Brooke is also working on three other musical projects – Quadroon, with legendary contemporary jazz pianist Joe Sample; and Hopper and Death and Venice, with playwright Anton Dudley.


jonathabrooke.com

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  1. AB says:

    I saw Jonatha’s play in Philly and was quite moved. Her interview on your website really drives home the idea of accepting and embracing the dementia patient’s sense of reality.

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