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When dementia reveals a cultivated love

my luminous mother

Simcha Fisher - published on 05/12/16

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“It seems that my mother has forgotten almost everything but how to love,” says my sister Rosie in this post, “I don’t know who you are, but you’re welcome to stay.” Rosie says:

There have been a lot of comings and goings in our house lately, and my mother, who has Alzheimer’s, can’t keep up. She walked into the living room yesterday, saw my husband playing the piano, and said “oh, are you spending the night too? Well, I don’t know who you are, but you’re welcome to stay.” Can you imagine being so generous? I’ve heard that when Alzheimer’s strips away everything else, it leaves the core personality. My grandmother, for instance, was reduced to one word near the end, but that word was “honey.” The doctor was impressed. “I’ve heard a lot worse words from Alzheimer’s patients,” he said.* “Your grandmother must have been a loving woman.”

My grandmother was a loving woman, indeed. When she could still string two words together, she once saw someone peeling a banana and crooned, “Oh, poor thing.” She would follow me around with an anxious smile, trying with her bare, trembling hands to piece together the ripped knee of my jeans. She was a mender, a soother.

My grandmother had also been an intensely sociable person who was known, decades ago, for her cocktail parties. Everyone liked her. She was a visiting nurse in the slums of Brooklyn — an ideal vocation for someone who wanted to see people and wanted to make them better. I can just see her, climbing stairs, knocking boldly, doing what needed to be done. She entertained, introduced, tried to make matches and friendships everywhere.

My mother, though? My grandmother’s daughter? Not a sociable person, to put it mildly. She always used to say that she felt a strange affinity for this tiny shack on stilts that stood in a swamp on the side of the road. You could only reach it with a ladder, and there was nothing inside but some broadcasting equipment for the local radio station. That was her ideal: to have privacy, peace, simplicity, and a beautiful, austere isolation that allowed her to send her message out to the world, but to be utterly undisturbed.

That’s not what her life looked like, at all. In a cluttered, ornate Victorian house, she bore eight living children and spent all her days surrounded by them, home schooling, feeding, and changing them, enduring sleepovers, parties, and weddings, battling her way through a profound fog of shyness and introversion to meet our friends, welcome our spouses, embrace our children. It did not come naturally to her, not at all.

So when my mother, artlessly broadcasting from the austere simplicity of her Alzheimer’s, says, “I don’t know who you are, but you’re welcome stay” — my God, that is even more remarkable than you might think. That willingness to accept people into her home is a willingness that was cultivated, painfully, deliberately, intentionally, over many seasons of life, until her hospitality grew such deep roots that it now apparently flowers on its own.

Dementia has relieved her of any real responsibility. No one expects her to make lasagna for forty anymore, or to put on a robe and find beds for eleven unexpected guests. But no one can persuade her that she can lay down that burden of intentional generosity. I joke (not really joking) that it’s a good thing I won’t know what I’m doing when I get Alzheimer’s, because it’s going to be awful. I am awful, deep down, and someday I won’t be able to hide it anymore. How humiliating, no longer to be able to disguise who you really are.

But look at my mother. Look at the flower of her love, so carefully cultivated. This is who she is, but only because this is what she trained herself to become.

All right, then. To work.


*My sister, Abby Tardiff, has this very important clarification.

“I do fervently believe that my mother is expressing the love at the core of her being, and that my grandmother was, too. Simcha has it right. However, I would like to add that sometimes Alzheimer’s creates paranoia and anger that is not an expression of the person’s true being, but simply an artifact of the disease. My grandmother’s vocabulary was eventually reduced to the one word “honey,” which expressed her personality well; but a bit before that, she developed a sailor’s vocabulary that I’d never heard from her before!”

Alzheimer’s may take away inhibitions and may spare some true core personality traits, but it is a degenerative brain disease which ultimately drastically changes the personality, especially in its more advanced stages. An Alzheimer’s patient who exhibits grotesque or violent behavior is not revealing his or her true self; his brain has been transformed against his will by the disease.

I sincerely apologize for unintentionally implying that dementia patients are somehow responsible for their behavior, or that we can read the soul of someone suffering from brain disease. My intention was simply to pay tribute to my mother’s long legacy of love and self-sacrifice.

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