There is an elderly gentleman at a long-term care facility in Ottawa. I have not met him, but I have seen his photograph. At 99, he still has a spark in his eye. He looks much more robust than his biological age would suggest and his features retain the handsomeness I imagine he possessed as a younger man.
Recently, I spoke with his daughter, who I’ll call Leah. Leah is keenly aware of the disconnect between how people may perceive her father – living to an age most of us will only dream of, still in decent physical shape, happy and smiling – and her awareness that he once was so much more.
It’s not truly him, she explained, her voice cracking. Her father was always fastidiously groomed, courteous and extremely gentle. Now, under the spell of dementia, what she calls a cruel and insidious disease, on some days her father must be cajoled into showering. He has, on occasion, resorted to physical outbursts. And he has lost the social filter that we all depend on to carry us through everyday interactions.
“It destroys me on a daily basis,” Leah explained. Every time she sees him, she feels he has “died a little bit more.”
But, bring him to music, and his spirit comes alive again. Leah sometimes performs at the facility where her father lives. When she does, her father rises from his seat, singing, filled with joy.
“That’s my daughter!” he beams with pride.
Rabbi Neal Rose recently retired as the spiritual director of the Simkin Centre, the Jewish long-term care facility in Winnipeg. He focuses on what he calls “spiritual care,” connecting with the person’s “inner reality,” he told me in a phone interview.
This may be achieved through the aesthetic markers of identity – things like food, music, language and holiday celebrations, or through more formal religious practice, like synagogue services.
And sometimes this means entering the person’s current reality. A resident, who I’ll call Mr. Cohen, Rabbi Rose recounted, was getting agitated. “Call the police!” Mr. Cohen yelled, as his children surrounded him, perplexed. Rabbi Rose put his arm around him.
“Mr. Cohen,” he said, “I’ve placed the call. The police will be here in five minutes.” Mr. Cohen relaxed, and went on his way.
It’s not lying, it’s not deception, Rabbi Rose emphasized. It’s entering into their reality.
There’s a fascinating paradox at work. While dementia in many ways robs the sufferers of their identity, it also forces their caregivers and loved ones to be in the moment with them, to engage in pure empathy.
I recently visited with an elderly relative who is suffering from Alzheimer’s disease. She seemed thrilled to see me, though she did not recall who I was. I realized I was desperately trying to penetrate through her fuzzy memory, to crack the code, as if she had a cinematic form of amnesia.
“Do you recall the sharp corners on your glass coffee tables?” I asked her. “You used to place blankets over them when I brought my toddler daughter to visit.”
I wanted to fill her metaphorical candy jar with memories, I explained to Rabbi Rose, when we later spoke. I knew how much pleasure my visits had brought to her and how much I enjoyed chatting over challah and hard boiled eggs at her home, the house she had lived in with her family for decades.
My instinct was understandable, but not realistic.
“Not if she no longer has a candy jar to fill,” Rabbi Rose offered back.
What’s more, too much pressing the dementia sufferer to remember can only leave both the sufferer and family members in a circle of frustration and anxiety. This is a dynamic Rabbi Rose emphasized, and which was echoed by Dr. Lee Blecher, a physician in Virginia who treats dementia patients.
Still, Rabbi Rose emphasized that it’s important for loved ones and caregivers to comprehend the whole person. At the Simkin Center, a glass box is placed outside every room. Family members fill it with mementos. Of course the totality of who a person is can never fit inside a glass box. But it’s a gentle reminder of the paradox that exists between engaging a person as they are, right here and right now, and imagining a past that puts the present into sharp, sometimes wistful, but ultimately poetic, relief.
Mira Sucharov, an associate professor of political science at Carleton University, blogs at Haaretz.com.