Outside, the sleet came down like needles, a perfect night for slipper socks and 1940s weepers on Turner Classic Movies. But no: I have tickets to "My Mother Has 4 Noses," a one-woman musical written and performed by the singer/songwriter Jonatha Brooke about the harrowing years when she saw her mother through the final stages of Alzheimer's disease.
It can't be funny, I told myself. The tunes might be fabulous — after all, Ms. Brooke won critics' praise for setting Woody Guthrie's journal entries to music. But oh, those monologues about her mother would be unbearable.
How much better to stay home and cry over doomed romance than inexorable death.
But off I went to the Duke Theater on 42nd Street for a performance both funny and wrenching, one I suspect would resonate with caregivers everywhere. I met Ms. Brooke later for a conversation about her mother and the events described on stage. Lanky in the jeans and flannel shirt she wears during performances, her long hair tied loosely back, she could have been any of us with little time for glamour.
Among the more than 15 million Americans providing unpaid care for family and friends with Alzheimer's and other dementias, at least three – Ms. Brooke, 50; her manager/director/husband, Patrick Rains, 64; and his sister, Julie, 60, underemployed and "couch surfing" – managed to find endless humor in a family crisis that unfolded from 2010 to 2012, as Ms. Brooke's mother descended deeper into Alzheimer's.
Ms. Brooke had a lifetime of practice dealing with her mother, whose florid wackiness and succession of illnesses, long before Alzheimer's, would have sent most children running for the hills. Instead the two were linked, said Ms. Brooke, as if there were "an electrical current running between us."
She was one of three children — the youngest, the only girl and the lone skeptic in a devout family of Christian Scientists in Boston. The language of the religion, its lessons and allegiances, "never leave you once you've been indoctrinated,'' Ms. Brooke said.
Those four noses, it turns out, are the collected prostheses her mother, Darren Stone Nelson, wore after untreated skin cancer had turned her into a "maxillofacial work of art," as Ms. Brooke put it. The cure for what ailed her mother, in the Christian Science view, was Mary Baker Eddy's unwavering belief that divine love "always will meet every human need."
The same was true when Mrs. Nelson had a uterine tumor. By comparison, her terrible arthritis seemed a mere inconvenience.
"Mom was a magical thinker," Ms. Brooke said. "So I was burdened with reality."
If the material world were an illusion, as she was taught, then so is sickness and death. Ms. Brooke took her first Advil at 30. She has attended just one funeral, her father-in-law's.
Perhaps it's understandable that dementia didn't occur to Ms. Brooke as an explanation for her mother's increasingly erratic behavior until she was well down the road. This was a woman who found a rainbow wig in the town dump and wore it constantly when her daughter was an easily embarrassed seventh grader. It was the postman who hesitantly suggested that Mrs. Nelson didn't belong alone at home anymore.
An independent or assisted living facility seemed the solution, as it does to so many of us. Ms. Brooke quickly settled her mother into a home for aged Christian Scientists in Massachusetts. She visited, dined with her mother's new friends, each with more grievously untreated maladies than the next. "Mental malpractice,'' Ms. Brooke calls it now.
Mrs. Nelson's hygiene was wanting, a common Alzheimer's symptom, and the staff let her get away with excuses rather than insisting she shower. "Now isn't a good time," she'd say. Or "I'm in the middle of something." Ms. Brooke eventually realized that "hymns three times a week is not going to cut it.''
Terrified and ignorant, but determined and mindful, she said, that "I'm my mother's only daughter,'' Ms. Brooke brought her to New York City. Home was, and remains, Apartment 7K in a rental building on upper (waaaaaaay upper) Fifth Avenue. Ms. Brooke rented an apartment on the third floor and moved her mother there. "I could see her window from my living room,'' she said.
Their first enormous challenge, as Ms. Brooke describes it in the play, was dealing with her mother's painful, unrelenting constipation. Once, just ''clipping her toenails creeped me out.'' Now, it was suppositories and enemas — and "poetry in this terrible intimacy,'' a transition many caregivers will recognize. Before long, Mrs. Nelson "became the crazy lady screaming down the hall.''
Hoping to relieve her mother's excruciating arthritic pain, Ms. Brooke agreed to have her undergo a knee replacement. There was not a word of warning from doctors that this wasn't a great idea for a woman too cognitively impaired for physical therapy. After surgery, Mrs. Nelson hallucinated for a week, Ms. Brooke recalled, and attempts at rehabilitation were like scenes from "One Flew Over the Cuckoo's Nest.'' Within months of the ill-advised operation, a hospice team joined the crowd in Mrs. Nelson's apartment.
Still this hardy woman lingered, from hospice's arrival in October until the next January. On a Saturday night, the nurses said her mother was "actively dying,'' common end-of-life parlance but alien vocabulary to a Christian Scientist. Ms. Brooke longed for her brothers, "lovely, beautiful men." But they were too steeped in their religion, she said, for a deathbed vigil.
Mrs. Nelson's caretakers read her Mary Baker Eddy's version of the 23rd Psalm. They watched Christian Science church services online. "We really tried to speak the language, honor the lessons,'' Ms. Brooke said, but religion seemed to have lost her power, and her mother seemed more enamored of Chanel No. 5, her favorite perfume, which her daughter sprayed in the air.
Monday became Tuesday. Mrs. Nelson's breathing was thready. When her time came, "she really did just slip away," Ms. Brooke said.
Waiting for the undertaker, Ms. Brooke, her husband and sister-in-law, and the caregivers sang sublime hymns and ridiculous ditties like "How Much Is That Doggie in the Window.'' A man arrived with a black body bag, loaded it, disinfected his hands, rode down to the lobby and pushed the gurney down Fifth Avenue to his van.
The gurney fit easily in the elevator, Ms. Brooke said, because long ago the apartment building had been a nursing home. That detail is not in the performance, but, Ms. Brooke said, "the irony isn't lost on me."
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