When she told me, “All I want to do is dance,” I realized the depth of the transformation in my mother’s attitude toward life. This happened in May, around her 92nd birthday, about three months after my sister and I moved her from her Jerusalem apartment to an Israeli nursing home for people living with dementia.
Five weeks later, on my flight back to Washington, DC, I received a video from the Beit Hashemesh memory care unit staff. In it, my mother Miriam was doing just that—dancing joyfully.
Her new passion for dancing is antithetical to her past attitude toward dancing. For years, both before and after her 2018 Alzheimer’s diagnosis, my mother perceived dancing in public as improper, as unbridled behavior, expressing lack of self-respect, even decadence. She has always guarded her public persona, caring deeply about what people thought of her.
This attitude intensified after the untimely death of my brother, her eldest son, 30 years ago, and after the death of my father in 2012. Dancing was something she rarely did; even so, she vowed she would never dance again.
We feared that the trauma would cause a severe emotional decline. We could not have been more wrong.
Now, she treats dancing as an expression of her newfound ability to shed the anxieties and inhibitions that have clouded her life in recent years. In her new environment, she is liberated and happy. And she expresses that in the words she can still muster. “I don’t give a damn about what people will think,” she recently told me, “I do what makes me feel good.”
My mother has shown me that life with Alzheimer’s, even in its advanced stages, can be meaningful, filled with love, joy and pleasure.
Obviously, Alzheimer’s is a terribly cruel disease. Abnormal protein deposits damage and kill brain cells, causing irreversible damage. There is no cure for Alzheimer’s. Medications can treat some of the symptoms and maybe slow down the progression of the brain’s erosion, but they cannot reverse or even stop the damage.
My mother’s case is no exception. She used to be a brilliant intellectual, an instructor at a teachers’ college, a Bible and literature enthusiast and an aficionado of the Hebrew language. Now she sometimes forgets her children’s names or even how we are related to her. She can’t answer simple questions. She gets lost in basic daily routines. Her Alzheimer’s symptoms often humiliate her and make her feel defeated. She is well aware of her confusion and loss and occasionally talks about it. Still, she is not unhappy. And she talks about that too.
Life with dementia is typically perceived as life without joy, without pleasure, without purpose or hope. Many see it as a life not worth living. But this is not the life that my mother has experienced since moving to Beit Hashemesh. The supportive and loving environment there, rich in stimulation and activities, compassion and love, gives her the opportunity to make the most of life, even if her cognitive skills are constantly and severely eroding.
The first signs of dementia emerged about a decade ago. Forgetfulness, repetition, confusion. Then came the diagnosis. Alzheimer’s. A scan of my mother’s brain, a brain that thankfully can still make positive choices, showed cerebral atrophy. As it progressed, the disease exacerbated existing anxious personality patterns, caused her shame and anguish, greatly diminished her social life, and deprived her of simple pleasures such as reading, writing and socializing.
For the past couple of years, my mother rarely left home to socialize with family or friends. She was ashamed of her confusion and forgetfulness. Her time at home was spent with devoted and loving caregivers, whom she has relied on for round-the-clock care. She loved Devshi, her Indian live-in caregiver, and Oliver, a wonderful man we hired to serve as a conversation companion and confidant. Still, she was unhappy. The apartment she loved so much was a source of ongoing anxiety. She felt unsafe in it and grew restless and irritable.
About four months ago, after much deliberation, my sister Eynat and I decided to move her to one of Israel’s best nursing homes for people with dementia.
The decision was difficult. We were afraid of Mom’s reaction. It was hard for us to picture her surrounded by people behaving oddly or ones with blank expressions. We couldn’t picture her tolerating their company. We feared that the trauma would cause a severe emotional decline, which—combined with the cognitive erosion—might deeply depress her. We could not have been more wrong.
What unfolded astonished us. After a few days of confusion and disorientation, she began to connect with the residents of the place. She started to take part in the activities, and enjoyed them.
Sitting in the lovely courtyard of Beit Hashemesh, as my sister and I expressed enchanted astonishment at her newfound joy of dancing, my mother plainly told us, “I am building a new life for myself.”
She certainly is.
Miriam Nir. Credit: Ori Nir
We are astonished by our mother’s passion for rejuvenation or renewal, with dancing as its ultimate expression, not only because it is a departure from her past behavior but also because it seemingly contradicts the nature of Alzheimer’s. Everything I have read and heard about the disease portrays Alzheimer’s as a relentless disease that shrinks your brain, reduces your ability to function, erodes your ability to learn and acquire new skills and knowledge, and eventually obliterates skills and knowledge you once mastered.
My mother, however, has found joy in an activity she used to shun. When I was a child, I remember times when the radio played a tango or a waltz and my father would extend his arm to invite his beloved wife for a twirl. She would typically turn away. There was no space for frivolity in her busy life, certainly not in front of the kids.
Here is the irony. While Alzheimer’s destroys one’s cognition, it also erodes one’s inhibitions. At least in my mother’s case, it is not despite the degenerative disease that she started dancing but because of it. We are quite convinced, and so is the staff at Beit Hashemesh, that had it not been for this horrible disease, my mother would not have discovered the joy of dancing.
But wait. Has she discovered it or re-discovered it? We don’t really know. In the many hours that my sister and I spent together in the past five weeks (a joy in and of itself) we have come up with a theory—one of several—regarding my mother’s transformation. The theory, admittedly hard to prove, is that the intense social interaction at Beit Hashemesh takes her back to her teens, the days she told us shaped her social-ethical-ideological consciousness. Like many teens in pre-independence Israel during the 1940s, my mother was a devoted activist in a socialist youth movement. Together with her youth movement peers, she toiled the land at new kibbutzim and stayed up late discussing Marx and Engels with girls and boys. Yes, boys. When going through her photo albums this past month, my sister and I found many photos that young men had given her at that time as “an eternal memento” of their time together. My mother told me that once, when she returned home late from a youth movement meeting, her father, who came from a conservative Sepharadi background, slapped her across the face for her immodest behavior.
The author’s mother Miriam, far left, with her fellow youth movement members in Israel circa 1940. Courtesy of Nir family archive.
My mother and her comrades sang and danced together. When we asked her if her intense social experience at Beit Hashemesh reminds her of those youth movement days, my mother said yes.
Not only did she rediscover her love of dance in her new home, she rediscovered love. She has forged a beautiful relationship with one of the men on her ward, a resident 16 years her junior, who also suffers from dementia. They exchange loving words, even caresses and kisses. They express their love for each other almost constantly, showering each other with terms of endearment like kerido and kerida, which mean “darling” or “beloved” in Ladino—the language of their parents. Their conversations are not always grounded in reality, but who cares? Mom is happy with the new relationship, and so are we. For years, she had mourned my father, the love of her life, and vowed she would never have another relationship with a man, even as she suffered from loneliness. “I am alone all the time” became her mantra.
Again, were it not for Alzheimer’s, which has eroded not only her cognition but also her inhibitions and anxieties, my restrained, tentative mother would not have experienced the uninhibited life she is enjoying today.
I asked experts whether the newfound sense of well-being that my mother has found may slow down or even slightly reverse her dementia. They were careful. Dr. Elizabeth Edgerly is senior director for community programs and services for the nonprofit Alzheimer’s Association, headquartered in Chicago, IL. Although there is no conclusive evidence to substantiate improvement, she noted that there is ample research to show that the absence of a sense of well-being exacerbates the disease. “Unfortunately, we learned a lot about the relationship that loneliness and isolation have with Alzheimer’s,” she said. “If you are experiencing isolation, and you have cognitive concerns already, your functioning can further decline as a result of your mental health.” That being the case, Edgerly said, it’s fair to assert that better mental and emotional health can contribute to better cognitive health.
Galia Haninovitz, Beit Hashemesh’s occupational therapist, was a bit more philosophical. As a practitioner, she says, she keeps reminding herself that people with dementia live in the moment. And that notion frames her expectations. “There are moments of communication, laughter, humor, truth, human connection and intense sweetness. When these moments happen—and they do happen—it’s wonderful. And that’s enough.”
After spending five weeks with my mother, I returned home reassured that she’s experiencing the silver lining of grace in dementia. Short on cognition, her life is nevertheless rich with love, meaning, caring for others, movement and, yes, even joy.
Top image: The author dances with his mother Miriam Nir in the courtyard at Beit Hashemesh. Credit: Eynat Hermony