Last year, it became obvious to me that my mother was struggling with more than arthritis pain and memory impairment. I moved her into my house (she lived right down the street), set up some doctor visits and an MRI, and had my suspicions confirmed. Images showed atrophy of the brain, consistent with Alzheimer's or "senile dementia", as the condition is generically known. My last post was a heartfelt page out of my journal around this situation.
My friend Christine asked two questions (in essence) through her comments on the post, which I will try to address here--and expand a bit upon, as well. Some background story may be helpful.
I used to work in an Alzheimer's unit in a large, prosperous assisted-living facility, attached to a retirement community. I was the unit's recreation coordinator--that is, the person who tries to bring "quality of life" to terminally ill people through activities of varying kinds. It was a challenging job, to say the least; I learned about death, about the politics of family and employees in a healthcare facility, and something called the "Best Friends" approach to dementia patients. It was an eminently sensible and humane philosophy of care, based on the intuitive solution to the problem of trying to adjust a brain-damaged person to "reality"--other than attempts to ensure safety and cleanliness, it can't be done. Not with a retreating, "unlearning" mind.
Rather than trying to bully a "malfunctioning" human perception into alignment with a caregiver's version of what was true, the idea was to compassionately conform to whatever was happening in the moment, as far as was possible in a "lockdown" facility (a gilded cage, to be sure). So if patient Emily thought that her long-dead husband was coming this afternoon to fetch her from this place--"school", in her mind--there was only one (drug-free) way to keep her relatively calm. I would make sure she was ready to greet the man still living in her heart--nails just so, lipstick, tea, perhaps a little nap before he came, so that she could be really fresh for his arrival.
If I presented my version of reality, so obvious in the consensus world: "Your husband has been dead for twenty years, Sweetheart," she would react with shock and grief, with as great a sense of loss as the first time she heard that news. Instead, after the nap or some other distraction, all she could think about was dinner. The memory and expectation, I discovered, quite easily faded.
The work was a perfect opportunity to learn, and I am extremely grateful in my present circumstance with my mother to have been so immersed and thus, so prepared. The abiding lesson in the relativity of "truth" has immense practical application in my relationship with her (and the rest of myself).
I found I had a pretty good knack for "redirecting" and coming up with things to do and say. No wonder...my twenty-five-year-old son is "developmentally disabled" with an autism spectrum disorder, and is still under my care. My own childhood story was punctuated with the effects of "manic depression" (now called bipolar disorder) in another member of my family. Two marriages foundered on the reefs of PTSD and all the related trauma (mine, his, ours). When I look at the standout times in my own memory, it sometimes seems as though my life has been an ongoing fight to understand all kinds of "brokenness" in my personal experience, as well as the bright goodness on the other end of the scale.
On to the questions and their "spiritual" implications. My friend said:
"I am particularly interested in whether someone loses a sense of personal self in this process. And if one loses a sense of 'Awareness' of 'Presence' as well..."
An answer depends upon the level of the question. Ultimately, we "lose" everything, maybe even before death.
On the surface, all I really "know" is my own experience and incomplete understanding. In my role as a caregiver, I have observed the emergence of long-suppressed or latent personality tendencies in dementia patients ("Jim never used to dance!"), as well as a habitual clinging to old reference points (the sense of personal self), even as they collapse.
In the beginning, the failure of memory and normal functionality often brings a sense of denial, shame and sadness. Thereafter, a regression through the phases of conditioning appears to occur...an almost teenage level of stubbornness, anger, grief...then a more childlike freedom from concern, spontaneous feeling, noticing things for the first time over and over. At that point, the "sense of self" seems very immature. Only the most hard-core conditioning remains. In time, there is a tendency to forget that one forgets, and there is less and less emotional pain.
I had the privilege of befriending a man in our unit who had been very "presence-aware", according to his spouse. He was previously a voracious reader of various philosophies (Eastern and Western), a meditation practitioner and lover of the sea. She told me that he had always been gentle by nature, and that his current mental state reminded her of an innocent little boy. Their love was obvious and inspiring--they were married 62 years. He always seemed concerned that she would leave him, though, and needed reassurance that she would be there. I gathered from this individual's history that he had strong "spiritual experience". However, the "evidence" of such an understanding--groundedness, peace, etc., was generally not apparent in his behavior.
My observation is that our physical/mental/emotional body--the persona--is "formed", like a tree, by the weather, social contact and context, gravity, nourishment or lack thereof--in fact, everything and anything. It's a whirlpool with a particular momentum, and self-awareness doesn't prevent the playing-out of reality, any more than a tree can stop a chainsaw. If a human tends to worry, that's what he does, on some level and in some degree until he "dies". If she is generally full of gratitude, that's how she is, for the most part, until the end. It just ceases to be an issue in the awakened person.
We tend to like small children, animals and trees because of the purity of their Being...that is, the fact that they can be none other than what they are. They can't pretend to be wise, aware, or somehow "better" than this moment in which they are enfolded and expressed. They are perfectly aware, but not self-conscious--not ashamed of who they are, or filled with hate over their imagined inadequacy, or pride in their lineage. They just are, in their own uniqueness, without the ability to second-guess themselves, this moment, or us. As we age, we are taught to fear, hate and defend ourselves, and thus the world. "Relief" from this suffering comes when we are able to drop the idea that we should be somehow different than This. We might just put it down, or dying can take it away, or not. In the context of loving someone with dementia, there is a certain relief when the "childlike" nature returns, and there is no more shame in the process of change. Things can finally be just as they are, without the shadow of how it "should" or "used to" be.
I can't speak for anyone else, because at the "bottom" of this sea, there is no one. I can, however, tell a story about a sweet old man and my impressions at the time. I can say that worrying, falling apart, cruel diseases, family loves and hates, corporate politics in healthcare, the whole ball of wax, in fact, is part and parcel of Intelligence. I can say that I have found myself as a whole that carries no memory and doesn't leave a trace, even while looking upon the apparent cycling of life and death. Everything is no-thing, and so an attempt to judge a mind as "broken" or "healthy", sane or insane, carries the same weight as the fall of an aspen leaf. How important! How unimportant.
In order to drop into the heart of this, I might ask whether such a sense--that is, Awareness of Presence--can really be lost, once uncovered. I suspect not, because the deepest possible awareness includes each and every state and its opposite. "Enlightenment" is the simultaneous realization that everything is enlightened and its suffering is real. Awareness is or isn't, like grass or snow, like thoughts and pain and bliss without a struggle.
Those of us who feel a desire to investigate the investigator, here, eventually find that fearing or fighting a personality and its conditioning (embodied here or in another), composed of seemingly objective "truths" that must be maintained at all cost, is simply too hard, after a while. Funny, even, because it is clear that everything still happens, even without this kind of armor...which dissolves, anyway, in its own time, by itself. My mother is only failing when I compare what I see now with a memory-story of a different woman. She is unconcerned about how I see her, and she does not seek my approval, any more than I can seek hers. In this way, our relationship has never been more real.
Although it is likely I will witness Mom falling into the ultimate, and that sadness and a sense of loss will perhaps make an appearance, I am aware that we are already there, and that she is doing this very well, perfectly, full of the grace of what is. Love and habits, love and anxiety, love and all of us...