Why I Love Alzheimer’s

Steve Roberts color photo: stone sculpture head and shoulders in misty hayfield

My mother died of Alzheimer’s.

As did my mother-in-law, mother to me in more ways than marriage.

My father-in-law, another source of light during the 30 years his daughter and I have been partners, died with his mind able to recall only the briefest bits of the previous ten minutes.

These three elders are nobody special in the world of dementia.  Their stories are common to many people.  However, because of them, I have become aware of how young we humans are when it comes to communicating with one another at the most fundamental level—heart to heart, or essence to essence.  This makes Alzheimer’s an invaluable teacher.

Not a popular one, to be sure.  Watching a loved one’s mind gradually disappear is an excruciating transition for those of us who consider intellect the measure of personhood.  Yet, within the pain of this loss is, I feel, the call of the universe to open ourselves to the possibility that maybe we’re missing something—that maybe there are ways of connecting that are more real than a robust dialogue or a funny story or a small piece of wisdom, or even the ability to state our own name.

I, for one, have found that there are.

If you are at all familiar with Alzheimer’s, you may have heard the anecdote about the elderly man who, every morning at a certain time, stopped whatever he was doing so that he could run off to an appointment.  When asked by someone who didn’t know him all that well what was so compelling, the man said, “My wife has Alzheimer’s.  She’s in a nursing home, and we have a daily date for lunch.”

“Isn’t it wonderful that your wife still knows who you are?” the person said.

“Oh, she doesn’t at all,” the man said, “but I know who she is.”

It’s a heartwarming story, but there is a kernel of it that eludes my own experience.  When the man says he knows who his wife is, what I feel he’s really saying is that he knows who he remembers her being, beyond the various roles of lover, mother, friend, et al.  Fair enough.  But I wonder if there is a part of his wife that the man has yet to meet, for if he did he would know that, indeed, she does know who he is—just not on any terms he is familiar with.

My mother and I would sit together for hours without talking, and yet the “conversation” we shared felt in my heart like the one we must have had when I was in her womb.  Or maybe it was the resonance that evolves between two people who have known each other over any number of incarnations.  Talk about something that’s hard to put into words, much less to comprehend on any “normal” terms.

Yet, in my mother’s presence, I learned that if I gave up thinking or needing or wanting or judging and just showed up with an open heart willing to experience and participate in whatever might present itself, magic would happen.  I would feel an innate, timeless connection to all of existence and the ever-new, depthless and unconditional support that infuses that connection regardless of pain or fear or suffering.  And that feeling might arise as I was changing her diaper just as easily as when she would unexpectedly put her hand on my cheek.

When, a few years later, the inner world of my in-laws became surreal, I felt the universe once again demanding that I do my best to give up every belief and expectation about how life is or ought to be, and simply bring as much love as I could to each moment.

One outcome was the afternoon my father-in-law and I drove from Vermont to Boston and had the exact same conversation, brand new, at least 25 times—and through this, on some cellular level, became simply two guys who loved each other out on a grand adventure.  If, in the great beyond, we’re invited to name the top 10 experiences of our life, I suspect both of us might include that ride.

There are those who say that the biggest challenge facing humankind is our difficulty in making room for differences.  Alzheimer’s can show us how true that is.  I can’t count how many times my own unmanaged fear prompted me to wish that the elders in my life with Alzheimer’s would die.  Still, it wasn’t anywhere near the number of times I’ve been grateful for all they’ve taught me about how to love.

 

For a video version of this essay, click here.

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