Just Forget About Itsam
by Mary Jo Bennett
Of all the possible causes of sickness and death, Alzheimer’s and other forms of dementia seem to be the most dreaded. It would appear that people are more attached to their minds than to their bodies, as I don’t hear of as many folks worrying about the “early signs of cancer” even though the end result can be significantly more painful – ravaging all aspects of the individual except, of course, one’s memory. Why is it that we are so attached to remembering who we are? And that this memory serves as our primary source of well-being? If memory acts as the glue that holds us together, maybe this would explain why people become so unglued at the thought of losing it.
As a hospice volunteer for many years, and now as a home caregiver for seniors, I’ve seen a wide variety of floor plans – the “home” environment (both internal and external) in which people live, as their stories draw to a close. Many factors make up this floor plan and of course its design and desirability is unique to each individual. Specific diseases will have their own architectural themes that will provide the overall framework to the floor plan – this you can’t get around.
Diseases come with symptoms, symptoms require treatments and treatments create side effects. How well a person is able to cope with these factors is largely determined by her personality, her support system and all the causes and conditions that have led up to this juncture in her life. Neither life nor death happens in a vacuum. So although the particular style of the house may be beyond one’s control to select, (liver cancer vs. congestive heart failure) the home’s interior design (how we engage with our disease process) is largely of our own making.
Personally, I am intrigued by dementia. Maybe because of my early training in Special Education and my lifelong affinity for children, I see a lot of overlap in these three areas – childhood development, special education and dementia. As dementia advances, the individual will often regress back to their earliest stages of development – needing assistance with what is known in the field as ADL’s (Activities of Daily Living). So many of the same tasks that we are accustomed to helping infants and toddlers with – bathing, feeding, dressing, toileting etc.-we now help the aged. In Special Education, we are trained to normalize individuals, integrating them whenever possible into mainstream environments. With a person experiencing symptoms of Alzheimer’s, I wouldn’t think twice about incontinence or aphasia as self defining limitations. I see more deeply into the individual and this is where mindfulness steps in. Relatively recently, within the last six years, I’ve started, in earnest, a mindfulness and meditation practice, which also reinforces my curiosity and interest in this subject.
Over the past year and a half, I have been part of a team providing 24/7 homecare for a woman with advanced Alzheimer’s. Jenifer (a pseudonym) is 90 yrs old and has been receiving hospice care for six months. There is so much I have learned through our relationship with regard to the juxtaposition of dementia and mindfulness. “We have our practice until we get dementia,” my teacher says, “then we become someone else’s practice.”
As Jenifer’s mind continues to unravel, I can identify many advantages, the most significant being her attunement to the present moment. She rarely, if ever, speaks about the future, so thoughts of this nature don’t create worry, fear, anxiety etc. Her long term memory is fading, leaving little opportunity for regret or rumination. Short term memory is practically non-existent, so any unpleasantness in the moment will be gone and forgotten effortlessly. She can still recognize the people she loves and cares about, suggesting that close relationships remain a priority, after most other mental clutter has been swept away.
Despite cognitive functions that are rapidly vanishing, Jenifer’s ability to relate to us with characteristic candor, wit and humor has not waned. One wonders how this can be, when so much of her language skills and vocal capacity have diminished. My best, intuitively based guess is to chalk it up to “spirit.” Perhaps the more clutter that has been cleared away from our interior living space, the easier it may be to allow our essence to flow through. And these attributes I have subscribed to Jenifer certainly do seem to reflect her essential nature.
Though her losses have been many, I would also argue that there have been desirable gains as well. You might ask, “With Alzheimer’s taking away so much, how much of a ‘self’ does she really have left?” But since Buddhists don’t believe in a self to begin with, isn’t this a moot question? I would propose that Jenifer’s particular presentation of dementia is very much an expression of mindfulness at its finest. It certainly seems to meet the fundamental criteria. And maybe even more of a blessing is that I am more mindful and awake in her presence.
Jenifer’s eyes can be incredible. Much of the time they are either closed (sleeping/resting) or quite still, as she engages in repetitive, self-soothing behaviors with her fingers and hands, not unlike autism. But on those rare, lucid moments when Jenifer and I are engaged and our eyes are locked, the transmission of love and grace is astounding. Like a lightning rod or a guru, pure insight will come through her either by way of a remark, a joke or a glance, and all I can do is bow in gratitude for the gift.
Developmentally, appearances would suggest that Jenifer is regressing back to infancy, needing assistance with all activities of daily living: an infant’s persona clothed in a beautiful, elderly woman’s body. So which is the “real” Jenifer – the needy infant or the poised and graceful body? (I’m not kidding – her legs are to die for!)
“The ridgepole is broken. House builder, you will build no more!”
Here the Buddha is referring to the habitual tendency of the mind to build a separate, illusory self with layers upon layers of thoughts, beliefs, stories, etc., through which we frame ourselves. Once the Buddha realized enlightenment, he successfully tore down this structure once and for all. Alzheimer’s has the same end result; the only difference is that the person isn’t aware, consciously anyway, that he is free!
Once during a conversation, it seemed that Jenifer was thinking about what she wanted to say in response to a comment. I said, “Jenifer, it looks like the wheels are turning; what are you thinking?” Shaking her head, she replied emphatically, “I’m not thinking!” How many of us can boast this in any given moment?
Granted, Jenifer isn’t currently presenting some of the more troubling symptoms of Alzheimer’s such as wandering, paranoia, catatonia, verbal/physical abuse, etc. Unquestionably, these conditions could, indeed, create suffering for her. But by the same token, they also could help cultivate increased mindfulness and compassion in her caregivers. And if this turned out to be the architecture of my particular house when my story was drawing to a close, these accommodations don’t seem too shabby, especially for someone in the business of service most of her life.
It is not my intention to oversimplify the issue or to suggest that Alzheimer’s will never lead to as much anguish as other terminal diseases. My point is that, as the diagnosis of Alzheimer’s is steadily rising in the so called “Greatest Generation” population, so, too, is the mounting terror and paranoia silently circulating among us Baby Boomers – that we may be doomed to a similar fate of abject mindlessness. A lot of people pay good money to step out of their minds. So just think…we may get our ticket for free!
Hey listen, we’re all going to die – we know this. Okay, we know this but maybe not so deep – like having death riding on our shoulder every day. Nevertheless, I encourage everyone to take a fresh look at dementia. Or better yet…just forget about it!
About the author
Through her years of experience in caring for the elderly and attending the bedside of the dying, Mary Jo Bennett has cultivated a deeper awareness of life in all its changing forms. Author of the book, When Autumn Comes: Creating Compassionate Care for the Dying, Ms. Bennett is passionate about exploring topics related to sickness, aging and death. “When an individual learns how to be curious and committed to developing mindfulness, aging can become a remarkable journey of ever deepening contentment and enhanced well-being.” She lives on the island of Oahu, Hawaii. www.hospicevolunteer.com