Monday, February 21, 2011

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:

family members
care partners
managers and directors

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


  1. As long as there is money involved more than heart it will always be like this. Lately, my Mom put an euthanasia cause in Health Care Directive after watching what was happening with her husband's former mother-in-law. She saw care facilities loving the $6000 a month, yet my mother bought the depends and was treated with scorn visiting her. Time for universal health care.

  2. Oh! I am so sorry your mother had to go through such an experience. Money over heart, and unskillfulness also are to blame.

    And yes, time to become advocates of change. Starting small, wherever we are.

  3. From Mom,
    Those are close to my observations as well. They have to wake everyone up at six to get them ready to eat at eight. Once they are up and dressed, there it is... until five o'clock dinner. After dinner it is bed time.
    In between are showers once a week, and sitting in dirty pants until someone changes you. My parents and myself saw enough of it ...that we don't and they didn't want to be there.

  4. Well seen, Mom!

    Thank you for your act of witnessing. The more such accounts, the more the world will take note, and be moved to act.

  5. Thankyou for the gift of this mindful witnessing and for sharing your own emotional path with us. My own path was blessed by a childhood in an environment with and for folks with dementia. My mother is a kindness role model - recently one of the people she cares for told her that their deepest wish is to die in her arms. I am working with care giving teams here in the uk around the cultivation of mindfulness and compassion....stephen post is supporting us which is lovely for us...

    Here i am (mindful)
    Caring deeply for my 'self' (self compassion)
    So i can care for others (engaged compassion)

    there is a film called 'knowing you matter'we have produced in which the voices of elders in care homes call the care givers to slow down, tune in, live in awareness - be together with care givers offering a quiet presence.

    we are bringing people together to 'think differently about dementia' -the themes are around gifts of nature, music, joy, compassion, family life and non seeking mind.

    i send you my love and peace and optimism for a better more whole way of being in relation to dementia.

    Brighton, uk

  6. Thank you so much Andy, for reaching out. I would love to learn more about your work in the UK. Is your video available to the public?