For two years I have been a member of a group of five (originally six) African-Americans and six Jews who have met monthly to listen, learn, and lean together toward social justice. That the white people are Jewish does not preclude any white persons from initiating and engaging in this kind of gathering.

Our process of give and take is partly modeled on circle practices*, which in their essence call on circle members to first build mutual understanding, trust, and acceptance before embarking on efforts, for example, to improve conditions for less fortunate neighbors or other common goals. In other words, it’s personal before becoming transactional.

Each meeting has a different facilitator (or in circle parlance a “keeper”) and theme. Our group has retained the same 11 members since it began.  Once formed, the group’s membership doesn’t grow or change. It retains the same members. Twelve is an optimum size. Meetings begin with a check-in in which members reflect on the past month, what’s gone well and what hasn’t. In this way and through stories we share, we have built a community in which we have developed a genuine affection for each other.

During check-in we talk about our losses, e.g., a death in a family, and our gains.  We find ways to support each other whether in sadness or joy.  Throughout, we’ve been open to sharing our fears and our dreams. We can disagree (often), but still maintain our trust and affection for each other.

Mind you, it takes time and energy to build such a group. Finding individuals willing to be vulnerable, commit to meeting for two hours monthly, and stick with the group for an extended period is challenging.

We call our group “Cross River Dialogue.” The river is the Anacostia which flows through Washington, DC, and is more than a geographic reality. The east side is mostly African-American, poor, often overwhelmed with street violence, and other chronic urban ills, due largely to systemic and institutional racism. The west is the Washington tourists see when visiting here.

For me the learning can come as a jolt, like when one member exclaimed she’d like to be white for one day just to have that experience, or when another said he hadn’t planned for retirement because he never thought he’d live long enough to enjoy it.

I admit this is a micro step. But it has brought us close and united us in ways we never anticipated. You can find us attending each other’s events, testifying before the DC Council on behalf of each other’s causes, and volunteering in ways we never imagined.

We are truly a circle of trust. 

*The Little Book of Circle Practices, Kay Pranis. Simon and Schuster Digital Sales. 2015

After presenting a webinar on our book Love’s Way: Living Peacefully With Your Family As Your Parents Age, I realized that little of what I discussed about having “The Conversation,” or transparency, or naming a healthcare proxy applies to persons with no family connections.

What recourse has an older adult with no one to serve as her power of attorney or executor of his will or someone to call in case of illness or medical emergency?  Whom do these people (often referred to as “solo agers” or worse, “elder orphans”) rely on for these and countless other supports?

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I recently attended an End-of-Life Expo. Organized by Washington, DC-based IONA Senior Services, a highly respected nonprofit dedicated to improving the lives of aging persons, its notice about the expo tweaked my interest: “When you express how you want to die, you reveal how you want to live.”

The day-long expo offered 12 sessions from dementia planning and organ and body donations to writing your own obituary and DC’s Death With Dignity Act. (In 2016 the District of Columbia joined seven other jurisdictions* and enacted a Death with Dignity law that enables terminally ill DC residents to take their own lives with two doctors’ approvals and after meeting a host of other requirements.) More on this below.

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When thinking about planning, I typically see a maze of legal twists and turns, forms to complete, conversations to conduct — an obstacle course with no finish line. But if I “de-construct” planning, it becomes more doable and less overwhelming. Here’s how I approach it:

Advance Care Planning

I start with my advance care directive comprising my living will and health care power of attorney (POA) or proxy.  These inform my loved ones and medical professionals how I wish to be treated if I have a life threatening illness or accident. The health care POA designates who should make health care decisions for me should I lack capacity to do so. Also included are a list of my doctors, prescription medicines, and other medical information.  

Of course, none of these documents are really operational without a conversation with those to whom I entrust my care. Advance care planning can extend to care-giving, whether provided by loved ones or hired aides. I also include a “dementia-directive”* which sets out my preferred levels of care should I lack capacity to make health care decisions for myself.

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Earlier I discussed how important medical advocacy is when a loved one or friend is hospitalized. As someone’s medical advocate, you want to ensure the hospital staff is serving her as well as possible. Especially at discharge. No one should ever be discharged from a hospital without an advocate, or at least a friend or caregiver, present to hear a discharge nurse’s instructions and review the paperwork that most discharged patients rarely have the capacity to absorb.

Following her hospital discharge your loved one (who has Medicare) may require skilled nursing care (SNC). She qualifies for SNC if: 

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A friend recently arranged to have his will prepared.  He told me he planned to bequeath his one piece of real property in three equal measures to his brother and his two sons.  In other words, three persons would become co-owners of one property. 

I asked whether he planned to discuss with them the terms (not the value) of his bequest.  He replied that they refused to discuss the matter. He said their unwillingness to discuss the bequest almost guaranteed a dispute over the distribution of the property after his death.  He acknowledged that from past experience he was powerless to avert this outcome. Discussions about death or money were out of the question. 

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Trust

Parents need to know their adult children will, to the best of their ability, ensure they receive appropriate care in a hospital, assisted living, or skilled nursing residence. They hope their kids will look out for their safety without diminishing their autonomy and independence, but enough to keep them safe.

Transparency

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A friend recently had spine surgery that took 5+ hours. After regaining consciousness, she found herself in the recovery unit…for the next 26 hours! Groggy from the anesthetic and not knowing whom to talk to, she languished there until a friend arrived and raised hell. She subsequently learned that private rooms were available throughout the 26 hours, but somehow the Recovery Unit staff wasn’t aware of any. When they finally wheeled her to a private room, she waited another hour for the room to be cleaned.

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Like many of you, I have an Advanced Care Directive comprising a Living Will and Health Care Proxy (or Power of Attorney) to make decisions for me if I lose my capacity to do so. I live in a jurisdiction (the District of Columbia) that permits physician-assisted death. My family and I have discussed my health care values and preferences. If I ever have a mind crippling illness and had earlier told my family and physician my preference not to continue living in that situation, my family and doctor know what to do. Right? Wrong!

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