Being With Speechlessness (Aphasia)

On Monday, my mother was singing to me her favorite tune La Java Bleue over the phone. On Tuesday, she had been robbed of her ability to speak by a stroke. Aphasia, the medical term to describe what happened to my mother, comes from the ancient Greek term for 'speechlessness'. It is associated with different types of neurological disorders, and comes in several forms. My mother suffers from expressive (non fluent) aphasia, meaning she knows what she wants to say, but is unable to get the words out. Such a sudden loss is traumatic and I have had to rely on both my practice and field knowledge to be as supportive as I could for my mother. I have also had to deal with my own grief of the mother I knew who sang and spoke to me. Yet another loss down the path of Alzheimer's and very old age . . . 

Most important is to acknowledge directly to the person, what has happened, and the likely emotions associated with the communication challenges that they are experiencing. When complicated with memory loss, the person may not understand what is happening to them, and may need to be reminded. With my mother, I have been telling her that she had a stroke, and is experiencing a temporary loss of speech. I want to keep her heart in a hopeful place, and there is indeed the possibility that she may respond to speech therapy.  I empathize with the extreme frustration she shows in her facial expressions whenever she is trying to talk, and I apologize for the times when I may not understand her. This is a step caregivers often forget in their communications with aphasic persons, particularly when the aphasia has been present for a long time. I also rely on the bank of previous spoken interactions with my mother, and all the topics I know she enjoyed then and is still likely to enjoy. Next time I visit, I may also try to see if I can encourage her to communicate through art, although that door may be closed given the state of her advanced dementia. For a person suffering from strict non fluent aphasia, and with limited to moderate or no dementia, writing and art making would be two logical outlets for self-expression. Last, is falling back on two most profound forms of communication, touch, and seeing. Gazing into my mother's eyes, I shared some of the most tender and loving moments we ever had together. It is quite something to realize that it took that much, for the two of us to get there. 

Many times during the past three weeks, I have rested on the foundation of my practice. Reading Ayya Khema, stopping often to connect with the breath, sitting every morning without fail, sharing in this blog with all my noble friends, and contemplating the teachings, particularly on suffering,  impermanence, not self, and the five remembrances. I have also been reflecting on my experiences of noble silence during retreats, and how such practice can help one prepare for the possibility of speechlessness both in oneself, and in others. 

Who's Got the Power?

Minding the Whole Reality of Institutional Elder Care.

In the course of my work with eldercare communities, I have become fascinated with the power differences that exist between the various groups present, some more obvious than others. This weekend's workshop with Max and Ellen Shupbach, from Deep Democracy Institute, enabled me to frame my experience within the context of rank theory. It goes like this:

Walk into any assisted living facility or nursing home in the U.S. and you very quickly get a sense of the two most flagrant power structures at work. First, is an organizational hierarchy with the director and staff in charge of dictating the daily operations, including how the care is to be delivered, by whom, and at what times of the day. Caregivers are to provide care to residents, following an established routine, mostly centered around ADLs - activities of daily living - There is a pre-determined time for wake-up, showering, getting dressed, eating breakfast, attending activities, getting changed, having lunch, taking a nap, attending more activities, having a snack, eating dinner, and being put to bed. Caregivers get their instructions from the organization, as represented by its executive director, wellness director, nursing supervisor, and activity director. In turn, residents are the passive recipients of care from caregivers.

Second, is a social hierarchy with at the top, higher-paid, educated, fully physically and mentally able members of the majority class. Below, are the care partners, who share with their bosses the good fortune of being fully employed and healthy,  while also incurring the disadvantages of being lower-paid, and being most often members of minority cultures, including sometimes a weak command of the English language. At the bottom, are the residents who suffer from the physical and also sometimes cognitive limitations of old age, along with the loss of identity from no longer working or being perceived as active contributors to society. Organizational and social hierarchies go hand in hand. Consequences of these power structures are dramatic, as demonstrated by the outrageously high turnover rates in caregiver staff in those facilities, and also the high incidence of behavioral symptoms exhibited by residents. 

There is more than what meet the eyes however. Other less apparent power structures also operate, that can open the way to a better way of caring, and greater happiness for all involved. With care partners, the power lies in them being the custodians of the care. Ultimately the quality of care comes down to, does the caregiver - or rather care partner - really care about the resident in her care? Does she feel genuinely moved to serve the other in need? Does she see him as a whole person? Does she respect him? Does she see her care tasks as opportunities to build a relationship with the resident? Is her heart involved? Does she feel empowered to use her whole self? This is deep democratic power in action.

Another form of such power resides with the residents themselves. One of the most powerful experiences in an elder care community lies in the witnessing of residents in various states of distress. Unattended residents, gathered in a common area, and left sitting in their wheelchairs, either drooling or muttering to themselves. Or pacing the hallways with blank stares, or screaming for help. Or aggressing each others out of sheer frustration . . . You may wonder, why care, besides the natural urge to care for other, less fortunate ones than oneself? As it turns out, many reasons. Living within such a climate, day in and day out, exacts a high price from the staff in charge, in the form of systemic psychological distress and eventually burnout. From a strictly business perspective, there is also the risk of turning away prospective families. I know this was one of the key deciding factors when looking for a community for my mother. Did the residents there appear relatively happy and well cared for? Or were they parked in the lobby with no one sit at their side? Because they have been silenced, does not mean that elders do not have the last word. 

What this reveals is an unexplored gold mine of possibilities for elder care, where the respective powers of elders and their care partners get fully acknowledged. Shifting the paradigm of care from solely organizational and social hierarchies to an inclusive model that takes into account all the constituents of deep democracy within the context of institutional elder care. Concretely this means, working collaboratively with care partners and residents to better understand and meet their needs. Inverting the pyramid of care so that it looks like this:

residents

family members

care partners

managers and directors

Paying attention to the whole reality. Being mindful . . .