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​Pondering My Mom’s Dementia

Dementia is defined as severe impairment or diminishment of intellectual capacity and personality integration due to the loss of or damage to neurons in the brain. Alzheimer’s is the most common form of dementia, but more and more we’re seeing the distortion of a sense of self occurring within a spectrum, similar to autism or gender identification.

In May my mom, Shelia, turned eighty. I spent a week in Detroit visiting with her and celebrating her birthday replete with balloons, presents, party hats, and a massive chocolate cake. Though it’s troubling to witness her forgetfulness, disorientation, and anxiety, it’s also precious to be with her innocence, vulnerability, and childlikeness. To the human development geek in me, it’s fascinating to observe her and to consider the notion of a self within the context of a damaged brain.

As a symptom of her disease, Sheila experiences a deterioration of her memory and the subsequent arising of a very unstable identity. One moment she believes she is fourteen and tells me she hopes to meet a fella and have grandchildren some day. Ten minutes later she’s terrified of dying, can’t believe she’s eighty, and believes that all the folks in the facility where she lives are meshugenna—Yiddish for crazy—except her.

After years of regular meditation practice and austere disciplines, I also experience a malleable and transitory sense of self. My habitual and predictable behavioral patterns—still present—are now woven into a larger tapestry of a more fluid persona and a broad spectrum of emotions, thoughts, and memories. I experience a softer sense of self or selves and a willingness to step into an unknown future.

So what’s the difference between Sheila and me?

First of all, her loss of a coherent sense of self was unintentional. Therefore her disorientation is often pronounced. I, on the other hand, have had a clear intention to deconstruct my identity in order to discover what lies beneath all the layers of personality, behaviors, and identifications. This intent radically impacts the second noticeable difference between my mom and me. In my mom’s case, as far as I can tell, there seems to be no sense of self remaining beneath the deteriorating one, whereas, I do have a core sense of self awake in contrast to my habitual persona. Still, whether this self would remain intact if I were to develop dementia—well, that remains to be seen.

My mother’s condition has informed my wondering about the value of practicing mindfulness and meditation when we are young, and how these practices might impact our aging process and identity based disorders often associated with it. Evidence points to the probability that a physically healthy lifestyle contributes to decreasing the likelihood of contracting many diseases later in life. It therefore appears irrefutable that the health of our brain faculties might be integral to a long mentally vibrant life. It’s possible that mindfulness practices and meditation could be to brain health what proper nutrition is to physical health.

The self I know most fundamentally as me is what I call the “me with no story”. I have no idea whether this core self would remain in act if/when my memory and brain function decline. Is my essential self dependent upon brain activity to exist? Or, is it a construct of awareness of a whole different order—a construct that, in the end, could be the one holding the malleable persona together?

I know my mom has some sense of self remaining. There is definitely somebody “home” who is being breathed—who chooses to walk or talk, eat or sleep, sing or dance. But all other aspects of her functioning are seemingly disparate, disjointed, unintegrated, and mostly random. It’s kind of weird to witness, actually. For example, we had a fabulous birthday party and the next day she had no memory of it ever happening. She may not have had any memory of it an hour afterward.

However, she did have an experience of her birthday in the moment: She was alive. Delighted. She said she felt special. Appreciated. She expressed how happy she was to have her kids there, even if she didn’t know our names.

One might say that the nature of the human experience in it’s “original state” is alive and delighted, unfettered by preferences, desires, or stories. Maybe the dementia is simply underscoring this truth and returning her to a more natural state.

If this is so, how can this possibility impact your life and mine?

If we observe carefully the dementia with detachment and deep caring, we might see it as an opportunity to notice a deeper truth about ourselves and the human condition. We might befriend our own personal self’s malleability and discover a whole new way of being human.

At fifty-four, I already experience memory loss, am slower on the uptake, and misplace things more often than I’d prefer to admit. But most of the time I’m aware when these things happens, or shortly thereafter, and I don’t freak out about it. I’m learning to accept this as the natural order of things. I frequently find that the “me” beneath the one forgetting is accepting, spacious, even joyful about the whole process. My mother, however, gets extremely anxious when she’s disoriented: all she’s experiencing is bewilderment, which can be scary. She’s not experiencing a part of her feeling disoriented. She becomes the disorientation in totality. She’s not able to make the disorientation an object of her experience. It is her experience.

Recent studies in neuro-plasticity point to the wondrous capacity of the brain to grow and change throughout one’s entire life. What if the same is true for the self? I’m grateful that I can tap into the wonder, joy and curiosity beneath the waves of disorientation, anxiety, fear and loneliness I experience. If only my mom could, too. In the meantime I will continue to celebrate the present moment with her. After all, in the end, this is truly all we have.

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