Sacrifice

“Ok boomer” suggests a generational divide that blames the baby boom generation (today’s older adults) for exacerbating income inequality and climate change, so step aside and make room for leadership by younger generations who have more at stake.  Bruce Gibney’s “Ok boomer” book, A Generation of Sociopaths: How the Baby Boomers Betrayed America (2017), blamed white privileged boomers as a voting bloc for failing to make sacrifices to preserve prosperity for future generations.  The so-called generation gap in American politics reflects the increased racial/ethnic diversity of younger generational cohorts. 

My recent wikiwiki trip to Hawaii reminded me how generational interdependence acknowledges our common humanity, shared vulnerabilities, and sacrifices to age in place.  Hawaii is the most racially/ethnically diverse state in the nation, perhaps the most affected as an island-state by risks from climate change (rising sea levels/coastal erosion, coral reef bleaching, extreme weather) and wisely looking to indigenous kupuna for solutions. 

“Indigenous communities are key sources of knowledge and understanding on climate change impacts, responses and adaptation. Their traditional knowledge allows them to forecast weather patterns, improve agricultural practices and sustainably manage natural resources. But many of them have been fighting complicated climate battles – putting their lives and access to ancestral lands at risk.”— “On the frontlines of climate change,” United Nations Sustainable Development Goals Goal of the Month (July 24, 2019) 

Airfares to Honolulu dropped after the 235^th meeting of American Astronomical Society at Hawaii Convention Center ended, and I arrived afterwards in time for a two-day Climate Change Conference at University of Hawaii (UH) and Hawaii Rising at State Capitol’s Opening of the Legislature, both marked by the resurgence of Native Hawaiian activism based on aloha ‘aina (love of land).  

“The Hawaiian sovereignty movement has also been about challenging our assumptions regarding the ways we live with one another by continually asserting a culture of sharing and interdependency with all of the life around us.” –Jonathan Osorio, The Value of Hawaii 

Ha O Ke Kai 2020 Hawaii Climate Change Conference at UH’s East-West Conference Center (building designed by late I.M. Pei), opened with Oli & Mele (chant) by Jon Osorio, UH Dean of Hawaiinuiākea School of Hawaiian Knowledge.  After graduating from Kamehameha Schools in 1969, he enjoyed an award-winning musical career (including 1981 Nā Hōkū Hanohano’s song of the year for “Hawaiian Eyes”), and then reinvented himself as an academic earning his PhD in 1996 (at age 45).  Last year, he received a Lifetime Achievement Award by Hawaii Academy of Recording Arts.  

Jon Osorio, Big Island native who grew up in the presence of Mauna Kea, and his daughter Jamaica (indigenous politics professor at UH) have been outspoken in their opposition to construction of Thirty Meter Telescope (TMT) on sacred Mauna Kea (considered kupuna, the first-born, in Hawaiian creation), the highest island-mountain in the world. 

Construction of the $1.4 billion TMT project has been stalled since last July when protestors, including many Native Hawaiian kupuna, blocked access to preserve Mauna Kea, and to oppose the ongoing oppression of indigenous people’s rights (continuing illegal seizure of sacred native lands). After the shameful arrests of 38 kupuna protestors, UH students staged a 117-day sit-in at Bachman Hall administration building to demonstrate solidarity with TMT protestors and to physically remind UH administrators of its kuleana (personal responsibility). Though UH aspires to be a Hawaiian place of learning, UH continues to condone controversial TMT project and institutional racism (notably lack of Hawaiian names on campus, including buildings and streets). 

Hawaii Governor David Ige read his welcome speech, referring to the program explaining Ha O Ke Kai means “we are at one with the ocean, and go where it takes us.”  Hawaii is one of 25 states who joined U.S. Climate Alliance, including California, North Carolina and Delaware, which flew in representatives to conference…no apologies for contributing to greenhouse gas emissions! Governor said nothing about the standoff on Mauna Kea over construction of TMT.

David Wallace-Wells, author of The Uninhabitable Earth: Life After Warming (2019), delivered keynote address, The Writing on the Wall: Conveying Difficult Messages.  His discussed the speed (half of damage through emissions from last 30 years), scope (temperatures contribute to increased violence and mental illness), and severity (planet is 1 degree Celsius warmer since Industrial Revolution) of climate change.  From telling us this is “a story of a single generation,” 37-year-old David told us this is also “a story up to us”: do we continue burning fossil fuels (notably, he flew in from NYC!) or tell a different story? What is the cost of inaction versus decarbonizing? Climate crisis is so huge that individual action is not enough, but policy action needed now to prevent irreversible climate change apocalypse of natural disasters, droughts, famines, etc.

Pardon the digression, but if only Americans listened over 40 years ago to a scolding President Jimmy Carter, who called for government actions and individual sacrifice for the collective good:

“Point six: I'm proposing a bold conservation program to involve every State, county, and city and every average American …into your homes and your lives at a cost you can afford.
I ask Congress to give me authority for mandatory conservation…strengthen our public transportation systems. And I'm asking you for your good and for your Nation's security to take no unnecessary trips, to use carpools or public transportation whenever you can, to park your car one extra day per week, to obey the speed limit, and to set your thermostats to save fuel. Every act of energy conservation like this is more than just common sense—I tell you it is an act of patriotism.
Our Nation must be fair to the poorest among us, so we will increase aid to needy Americans to cope with rising energy prices. We often think of conservation only in terms of sacrifice. In fact, it is the most painless and immediate way of rebuilding our Nation's strength…It gives us more freedom, more confidence, that much more control over our own lives.”—President Jimmy Carter, “Crisis of Confidence” speech, July 15, 1979 

Instead, majority of Americans chose self-indulgence, consumption, and an actor for President who removed solar panels that Carter installed in the White House.

Telling Stories: Hawaii’s Scientists, Artists and Activists Respond to Keynote moderated by Beth-Ann Kozlovich, former Hawaii Public Radio host.  Last year’s conference theme of equity influenced this year’s theme of climate change communication.  Panelists criticized capitalism for perpetuating the extraction of natural resources contributing to climate change, but what’s the role of individual, community and government actions?

·       Noelani Puniwai, UH School of Hawaiian Knowledge, recommended talking about climate change in local ways of understanding like less rain in Hilo and less snow on Mauna Kea to feed rivers; interdependence strengthens community resilience; talk about where food comes from to bring community together; indigenous government not by consensus, but ali’i (chiefs) decided how to benefit community.    

·       Solomon Enos, Native Hawaiian artist (wearing “Indigenous Tourist” T-shirt), sounded like a permaculturist when he said, “we are the problem, we are the solution.”

·       Kawika Pegram, Climate Strike Hawaii activist and Waipahu High School senior raised the sharpest critiques: too much emphasis on idea of personal responsibility contributing to climate change; why does government continue to subsidize fossil fuel companies that perpetuate further dependence to maintain quality of life; input by local communities most affected needed for renewal energy projects like Kahuku windmills. 

Climate Ready Hawaii: Adapting to Rising Seas panel moderated by Brad Romine of UH Sea Grant.  Hawaii residents can check out if they can continue to age in their homes if sea levels rise at http://www.hawaiisealevelriseviewer.org/, an interactive map of projected exposure and vulnerability to coastal hazards, including erosion and flooding. 

Climate Ready Hawaii: Achieving Zero Carbon Mobility panel moderated by Richard Wallsgrove of UH Law School, and three of four scheduled panelists were replaced.  Transportation sector generates the most greenhouse gases in Hawaii: about half from ground transportation, and 1/3 of urban lands are locked up in parking!

Chris Yunker said new Hawaii State Energy Office purpose includes clean transportation: walking and biking!

CJ Johnson said solution is not just to electrify cars (Hawaii has 10,000 electric cars out of 1 million vehicles on the road), but policy incentives like charging users per mile, congestion pricing, removing parking subsidies—pointing to how California transformed equitable congestion pricing to reinvent public transit because improved public transit options needed before implementing congestion pricing. 

CJ also reminded need to prioritize Vision Zero safety policies for vulnerable seniors, people with disabilities and the homeless, instead of storing (parking) cars and widening highways for speed and convenience of able-bodied.

Q&A with mini-keynote presenters Jamie Stroble of King County Climate Action Team (left Hawaii for college) and filmmaker Roger Sorkin of The American Resiliency Project.  Jamie’s communication tips included: show how climate change impacts people & places around the world, especially images of people from places that audience connects with; provide more information to aid understanding; reduce technical language, condense and refine information.

Research Lightning Talks highlight was hearing from Kalisi Malusio talk about Growing Global Potential of the Indigenous Crop, Breadfruit, under Climate Change: this protein-rich staple in Hawaii is a fast-growing perennial tree that grows in sand, resilient to climate change impacts (drought, storms), and produces annual yield of 450 pounds that can feed generations.  

UH Communications Professor Scott Schimmel moderated Mini Film Festival featuring student filmmakers.

Jamie Stroble and Lala Nuss facilitated workshop, Stories of Strength and Vulnerability: Communicating Climate Change & Equity.  Jamie discussed finding frontlines of climate change, or human impacts of extreme weather (storms, floods, hurricanes, fires): young children and older adults harder to regulate body temperature, migration due to war/conflict related to climate change, breathing difficulties from wildfires polluting air, inability to sleep/concentrate due to extreme heat, etc. Honolulu Climate Resilience and Equity Manager Lala discussed Oahu Resilience Strategy, based on four pillars:  remaining rooted in place-based culture to address affordability, bouncing forward from disasters, climate security by transitioning from Hawaii’s status as nation’s most fuel dependent state to achieve 100% clean energy by 2045, and community cohesion as one island ohana that cares for all. 

Hawaiʻi Rising at State Capitol was a massive show of intergenerational, multicultural People Power, supported by a coalition of Native Hawaiian organizations and grassroots individuals to demand justice for all people and ʻāina. 

At Pu’uhuluhulu University near entrance to State Capitol, Waipahu High School senior Kawika facilitated discussion, “Mauka to Makai: Protecting Natural Resources in Hawaii” with Halau Ku Manu Public Charter School student.

For last 10 years, Ku’i at the Capitol has promoted aloha ʻaina, including eating from the land as a political lifestyle for all of Hawaiiʻs people: pounding kalo (taro) and ‘ulu (breadfruit).

House Representative Cedric Gates, Hawaii's youngest twenty-something state legislator, gave away Waianae-grown produce outside his office.

Honolulu Star-Advertiser article, “’Big ideas’ finished at Legislature,” suggested that gone are the “good ol’ days” in the 1970s when Hawaii passed progressive legislation like Prepaid Health Care Act via employer mandate, first state to legalize abortion, first state to pass Equal Rights Amendment, etc.  After 21 years, Hawaii became the first state to pass legislation to support working caregivers with Kupuna Care Act of 2017.  

Nowadays the Star-Advertiser noted that Hawaii lawmakers lack a sense of urgency and appear “stuck” in trying to address issues like homelessness, affordable housing and increasing cost of living that may be responsible for 3 straight years of declining population as residents continue outmigration in search of more opportunities.  Since 2016, about 12,000 residents left Hawaii.  And this exodus has implications for older adults who wish to age in place, as traditionally family members nearby could intervene to avoid nursing home placement. 

Two recent reports, Financial Health Pulse (2020) and Aloha United Way’s ALICE (2017), described the financial struggles of the majority of Hawaii residents, including older adults:  

·       Almost two-thirds of people working past retirement age report working more than one job 

·       15% of Hawaii residents aged 50-64 and 4% of those 65 and older said they lived with extended family. 

Day before Opening of Legislature, Governor and Legislature announced an agreed-upon package of bills to improve Hawaii’s affordability with minimum wage increase, tax breaks for the working class, affordable housing developments and access to childcare and pre-school.  They proposed slightly increasing hourly minimum wage from $10.10 to $13 by 2024, but Living Wage Hawaii is seeking $17 (again). 

De-occupy Hawaii and Hawai’i SEED (“In Soil We Trust”) 

T-shirts reading “Keep Hawaiian Lands in Hawaiian Hands” and “We are the Change #AlohaAina2020.” 

58-year-old State Senator Laura Thielen (Democrat) and her 86-year-old mother, State Representative Cynthia Thielen (Republican) will retire at end of this legislative session. 

At Kupuna Forum, longtime Molokai activist Walter Ritte talked about kupuna’s 187 days of nonviolent direct resistance at Mauna Kea, reminding kuleana to protect aloha ‘aina.  He pointed to State Capitol as “building based on compromise” that shuts out the voice of Hawaiians.  “Uncle Walter” and his generation raised their voices in opposition to U.S. Navy bomb testing of Kaho’olawe, which they also occupied during the 1970s Hawaiian Renaissance movement, and opposed overdevelopment and GMOs to defend traditional subsistence fishing/farming/hunting lifestyle.  Now he called on Native Hawaiians to participate in political system by registering to vote and voting to protect Native Hawaiian interests.

“Auntie Maxine” Kahaulelio was one of 38 mostly Hawaiian kupuna arrested at TMT protest last summer and facing trial this month.  Along with Walter Ritte’s wife Loretta, Auntie Max was featured as one of four courageous women in the book, Nā WāhineKoa: Hawaiian Women for Sovereignty and Demilitarization (2018) by UH Political Science Department Chair Noelani Goodyear-Kaʻōpua.  Auntie Max has been an aloha aina advocate since 1970s, organizing for welfare rights, supporting communities against evictions in Chinatown and Waiāhole, fighting against military bombings (Kaho‘olawe, Pōhakuloa) and for preservation of sacred lands (Mauna Kea, Kahuku, Waimanalo).  At one point, she urged “get angry,” then quickly said, “kapu aloha, love each other, be together … if married, listen to the wife.” 

Wondered where was Haunani-Kay Trask, radical UH professor (retired) who received Angela Davis Prize last year?

Decarcerate Hawaii: Pu’uhonua not Prisons facilitated by Shayna Lonoaea-Alexander, field organizer with ACLU’s Smart Justice, which aims to reduce the U.S. jail and prison population by 50% and to combat racial disparities in the criminal justice system.  Shayna shared her experience growing up with a father in prison, in an effort to end the stigma of incarceration that affects over 5,000 Hawaii families, and called for a return to the traditional Hawaiian model based on healing as an alternative to prison. 

Based in Hilo, Ohana Ho’opakale is a community-based organization that seeks to build Pu’uhonua, or places of refuge (similar to Biblical times in Jordan and Canaan, Numbers 35:15) where people who committed crimes could be healed and eventually returned to the community.  The focus is restorative justice to rehabilitate non-violent offenders in a therapeutic environment focused on holistic wellness, learning job skills, entering drug rehabilitation, and doing ho’oponopono (Hawaiian practice of “making right” relationships by reconciliation and forgiveness).  With 60% of Hawaii’s prisoners classified as nonviolent offenders, they could be diverted to community-based program, eliminate need for prison, save taxpayer money, reduce recidivism by treating (not punishing) people with substance use disorders.

According to OHA Final Report of the HCR 85 Task Force on Prison Reform, Native Hawaiians continue to be disproportionately incarcerated, representing 21% of the general population but 37% of the prison population, with devastating impacts of cultural trauma and intergenerational incarceration.  Native Hawaiians also make up 41% of those incarcerated in corporate prisons in the Mainland, where they are isolated from ‘aina, and cut off from their culture and families. 

(San Francisco’s new District Attorney Chesa Boudin, who was traumatized as a child visiting his parents in prison, is offering caregiver diversion program as alternative to incarcerating parents of minor children.) 

Signs encourage Native Hawaiians and Samoans to complete 2020 Census.  Last census in 2010 counted 527,077 Native Hawaiians in the U.S., with nearly half living in the Mainland.  Are Native Hawaiians being priced out of their own home-islands?

At UH School of Medicine, Scott Denny, MSPA, PA-C, discussed unique healthcare dilemmas in LGBT Health Care: coming out (lifelong minority stress), internalized homophobia (onset early age—shame, stigma; drug/alcohol use, self-destructive behaviors), dating and sex ed, body dysmorphia (eating disorders, testosterone abuse—bulking culture in gay men), bi-invisibility/bi-erasure (exclusion in gay/straight worlds = poor health outcomes), and aging (queer civil rights activists are now vulnerable in old age).

Pau hana Friday Tour of Leahi Adult Day Health Center (ADHC), on ground floor of Young Building on campus of Leahi Hospital, located across from Diamond Head Health Center.   Leahi ADHC is open weekdays 7 am to 5:30 pm, private pay $95 daily rate/Medicaid accepted, provides valuable respite to working family caregivers who drop off frail parents to receive health monitoring, nursing care, social services, recreational therapies (walls decorated with many collaborative art works), nutritious lunch and snacks for regular or modified diets, etc. 

Leahi ADHC’s reception area with table covered with cloth reading “Honoring Our Centenarians” or upcoming celebration of four centenarians age 100 to 110.  

Comfy chairs, but no physical/occupational therapy.  Instead, ADHC recreational therapist is responsible for leading physical exercises, including aides who guide walks on campus grounds.  PT/OT available at Rehab Center, next door but separate from ADHC. 

Gardening table outside with view of Diamond Head and sunny skies sweeping clouds away.  Photo taken two days before elder-to-elder abuse led to tragic fire at nearby Hibiscus Drive in Diamond Head, burning seven homes and causing clouds of smoke.  On Sunday morning, recently evicted 69-year-old handyman set his 77-year-old landlady’s home on fire, killing both in murder-suicide after he shot to death two police officers responding to assault call. 

Dementia in the Family: Care Options and Resources conference on Saturday at Chaminade University campus, with view of Diamond Head and confusing to find conference space because way too many buildings named Clarence T.C. Ching.  Attendees received a gift bag from Larry’s Bakery, a family business which Yafuso children closed after 50 years of operation so they could provide home care for their mother who was diagnosed with Alzheimer’s.  It took just one visit to a nursing home (unnamed) for them to decide they would do what was needed so she could remain in family home. See "Matt Levi Investigates: Family First” video. 

Poki’i Balaz earned her doctorate and worked as geriatric NP in the Mainland, then returned to Hawaii as millennial caregiver after her father was diagnosed with younger-onset Alzheimer’s disease.  She presented on Dementia Basics and Caregiving. 

Kim Ong, RN is Hawaii’s only Certified Elder Care Coordinator, helping older adults navigate long-term care.

Honorable mention to “Aging Well” with Diane Ako, a caregiver to her mother who had Alzheimer’s, for her informative series each Friday that can be viewed online. 

Back to San Francisco

At CityLights bookstore for David Talbot’s reading of his latest book, Between Heaven and Hell: The Story of My Stroke (2020).  With humor, he said “different strokes for different folks” as he faced surviving his stroke in November 2017 (at age 66) with “stoic exuberance,” recalling his mother had several strokes and his biggest worry was being a burden.  He recounted how he lay dying, rushed to St. Luke’s, which provided “awful care” with an “incompetent doctor” who diagnosed him with flu.  Fortunately, his sister who is a physician in Portland, intervened by phone, and he was rushed to CPMC Davies for improved care. While surrounded by family, he was “ready to go and say goodbye,” but his wife and son told him "you can’t die"; he would survive to support his son Joe, who had dropped out of high school and anxiously directing film, Last Black Man in San Francisco.

With assistance from CPMC “family of 5 providers,” he rebuilt his life.  After his stroke, he could not be his “same self” as he was slower, more fragile, walking with cane and could be last to finish crossing the street; now, he said he lived with “death as companion,” appreciated life more, reduced risk factor by losing weight.  He recalled his son feared he would change into Trump supporter, but stroke was “not as catastrophic”! Mostly he’s had to acknowledge his limits, feeling chronically dizzy like being on drugs, which protects him from chaos of life.  He said he can’t stand pity, so he understands why people don’t disclose their medical condition.  He gives love back, so burden is not severe. He also wants to bring back the lifeblood of SF, and remain an activist to get out of depression; for example, he supported Jane Kim in mayoral race against “Ed Lee clone, London Breed.”  He said stroke opened him up, so he’s more personal.

At The California Endowment, Family Caregiver Alliance hosted Caregiver Conversations: A Day of Learning, Support, and Information Exchange, starting with breakfast prepared by Mamacitas Café.

Nate Miley, Alameda County Supervisor and Social Services Committee Chair, talked about being a long-distance caregiver to his 89-year-old mother who is determined to live independently in her 3-level Maryland home.  He has advocated for “age-friendly council” because “if it’s good for seniors, it’s good for everyone.”  In 1986, he helped organize United Seniors of Oakland and Alameda County (USOAC), where his daughter now works.

Leah Eskenazi, MSW, FCA Director of Operations & Planning, introduced keynote speaker Rita Choula, Director of Caregiving Projects at AARP Public Policy Institute.  Rita compared family caregiving in the past (multi-generational household, stay-at-home mom, care done collectively because everyone together) v. present (working mothers, no close proximity, increasing diversity, and rattled off statistics:  41 million family caregivers, 24% millennials, 40% men, 40% multicultural communities, and 17% of employees provide care for a family/friend.  She reminded us that almost everyone will give or receive care at some point in their lives.

Family caregivers juggle many tasks … positive effects on quality of life, such as feeling about making an important contribution (greatest for Hispanic/Latino and Black/African American caregivers), feeling closer to care recipient, and gives new skills to caregiver (particularly Hispanic/Latino, Black/African-American, Chinese, Gen X and Millennial).

FCA Executive Director Kathy Kelley talked about Supporting Caregivers in her 40-year career with FCA, which has been caregiver centric v. disease-specific.

Resource Fair:  Christina Irving shared that FCA is partnering with Senior & Disability Action to offer two-week Caregiver Survival School! FCA, in collaboration with Benjamin Rose Institute on Aging, also launched Best Practice Caregiving, a new web-based database of more than 40 programs evidence-based programs for dementia-caregiving. 

Caregiver Panel: Addressing Day-to-Day Caregiver Concerns and Challenges shared resources: Self-care; respite via in-home care, adult day programs, out-of-home respite (ALF, SNF).

Alameda County Supervisor Wilma Chan advocated to preserve adult day health care (ADHC) programs in 2011, so now two remain (outside of PACE). 

Lunch Table Discussions: Caregiver Action & Advocacy.  At my table, I volunteered as scribe to document barriers to receiving caregiver support: disparities in service delivery that focus on race/ethnicity, but ignore broader differences such as autism and severe behaviors; FCA focus on adults, excluding children with developmental disabilities/behavioral health; need to leave county for better care (e.g., speaker talked about move to Napa); finding trustworthy and culturally sensitive caregiver to hire (e.g., risks of theft in home, sleeping on job, abusing care recipient, language, etc.); not knowing where to find support, not knowing how to communicate needs; financial incentive for middle-income working caregivers.

Margaret Cullen on Compassion and Caregiving.  There is no compassion fatigue, but empathic distress.  She discussed need to exercise self-compassion in 3 steps:

1.   mindfulness of suffering: tendency to be self-centered in pain, so recognize not alone to counter tendency to feel singled out

2.   common humanity: suffering connects us to one another

3.   self-kindness/self-mentoring: tell yourself “it’s okay”

Call to Action by Susan DeMarois, Public Policy Director at Alzheimer’s Association.

Mostly car-free Market Street took effect January 29th, intended to reduce pedestrian injuries/deaths (seniors at high risk) and speed up public transit times in SF's busiest street, which sees half a million daily walkers and 200 buses hourly.  It's a beautiful day in the neighborhood!

Strength in Age: Harnessing the Power of Networks at GSA

Care partners

“When you give something, you’re in much greater control.  But when you receive something, you’re so vulnerable.” – Fred Rogers to Jeanne Marie Laskas, “The Mister Rogers No One Saw,” The New York Times (Nov. 21, 2019)

At this month’s Gerontological Society of America’s Annual Scientific Meeting, the term “care partner” seemed to be used more often, replacing caregiver.  While a caregiver is one who gives care to a recipient who needs assistance, a care partner describes both parties in a caring partnership with shared goals, opportunities to both give (control) and receive (vulnerability).  Care partner also reflects more dynamic roles in person-centered and partnership-centered models of care. 

“Person-centered care involves engaging with people as equal partners in promoting and maintaining their health and assessing their experiences throughout the health system, including communication, trust, respect, and preferences.” –Primary Health Care Performance Initiative 

Partnership-centered care goes beyond person-centered care by promoting a culture of collegiality:

“(Partnership-centred care) approach promotes collaboration between all those involved in an older person’s care. It recognises the values of interdependence and reciprocity, and aims to maximise the wellbeing and dignity of all by creating a positive environment that draws on the best evidence-based practice available.”—Caring for Older People: A Partnership Model, Centre for Innovation and Education in Aged Care (CIEAC), Deakin University 

Caregiver Action Network (CAN), a non-profit organization advocating for more than 90 million Americans who care for loved ones of all ages, selected the annual theme for National Family Caregivers Month, #BeCareCurious: about your loved one’s goals, treatment options, research, the care plan, and insurance coverage.

Language matters because words have meanings that shape culture, attitudes and behavior.  Yet reframing care takes time as there was no rebranding of National Family Caregivers Month to Family Care Partners Month?

As a follow-up to September’s Care Agenda: Expanding CA’s Long-Term Services and Supports (LTSS) for All Town Hall meeting, California Aging and Disability Alliance is circulating a petition for a new social insurance program to help Californians afford LTSS needed to live and age with dignity in our communities. 

According to this month's AARP report, Valuing the Invaluable, the availability of family “caregivers” is unlikely to keep pace with future demand: in 2026, baby boomers begin to turn age 80—when people are most at risk of needing long-term care (LTC); yet the U.S. population aged 45-64, “peak caregiving” years, will increase by only 1% between 2010 and 2030, while the age 80+ population likely to need LTC will increase by a staggering 79%!  

House Ways and Means Committee held a hearing, Caring for Aging Americans, that included powerful testimony from a family “caregiver” faced with raising $84,000 to pay for her mother’s home healthcare, or dropping out of her last year at Yale medical school to provide this care.  Proposed solutions included universal LTC, increased reimbursement rates for nursing homes, stronger enforcement to prevent elder abuse, expanding access to hospice care, addressing LTC access in rural areas, developing workforce, paid family leave, etc.

At Institute on Aging (IOA), Jenny Yen, PsyD, Director of Training for Integrated Behavioral Health, presented on De-escalation Techniques and Strategies.  In her work consulting IOA staff in addressing challenging client behaviors due to dementia and psychiatric issues, she emphasized the need to view and understand people and their behaviors with compassion (=reduce suffering), increase empathy and strengthen relationships.  We all experience suffering (e.g., loneliness, fear, anxiety, stress, unmet need, being misunderstood, underappreciated, etc.) and want to be respected, so approach the person with suffering with a view to help, not punish. 

This training made me reflect on my work in the Tenderloin serving marginalized and diverse older adults, observing conflicts arising from control issues relating to personal space (lack thereof in densely populated congregate places like senior centers and SROs), mental illness (loss of control in anxiety/trauma, confusion in psychosis, trust and safety violations in personality disorders, not knowing how to express complex feelings in grief and loss), cognitive disorders (impulsive, forgetful expressions), and impact of cumulative disadvantages (poverty, discrimination).  Her tips included:

·       Compassionate listening: ask what is their suffering, what is trigger? Be present, give complete attention (no multi-tasking), convey you are following discussion, avoid problem-solving (unless they ask?), be open-minded and curious (no judgment), listen for suffering and triggers (work to remove triggers, create sense of safety), reflect/validate (e.g., “Sounds like you’re going through a tough time.  Tell me more.  What helps you when you are stressed?”)

·       Redirect attention: ask/use “we” language to change topic/activity/environment (be ally, “let’s do together”); offer choices to regain control & opportunity to grow/learn (integrate person’s strengths)

At JCCSF’s 5^th Annual Embracing the Journey End of Life Resource Fair, Dr. Shelly Garone presented two talks on Palliative Care: 

·       The Art of Taking Care of Our Dying Loved Ones – Finding Peace Within Knowledge: where would you prefer to die (90% of Californians want to die at home, only 25% actually do); how would you choose to die (“sudden death” in sleep for 10-15% Americans, cancer 20-25%, organ system failure 20-25%, dementia/frailty 40%); physical & emotional aspects of dying (disengagement from prior joys-life smaller, loss of appetite, onset of skinniness, increasing sleep; delirium, chorea, pain, air hunger/shortness of breath, own un-ease & un-readiness); timing (out of doctor’s control, loved one choose moment most protective, ears last to turn off so say everything want to say)

·       Taking Care of Caregivers – Finding Hope Despite Grief: keep notebook (jot to-do tasks, clinical notes); delegate; get informed; don’t lose your health; take breaks (nobody likes to be watched while they sleep, some too private to die with others present); our bodies die, this doesn’t mean that life is worthless.

SF Supervisor Hillary Ronen delivered keynote at Redefining Crazy: It’s the System, not the People conference hosted by Mental Health Association of San Francisco.  She introduced her proposal for universal Mental Health SF, which emphasizes voluntary engagement and addresses current gaps in “coordinated, managed care fashion”:

·       24/7 service centers (similar to Behavioral Health Access)

·       office of coordinated care (real-time inventory of beds, high quality data, regular/intensive/critical levels of case management with standardized supervision)

·       crisis intervention street team (similar to Mobile Crisis)

·       expansion of services (more beds, cooperative homes)

·       office of private insurance accountability to advocate for access to anyone insured

·       use $400 million budget for behavioral health more wisely, plus additional $100 million funding via taxes.

She explained her proposal evolved from trying to address the homeless crisis, especially after homeless from Super Bowl City near Embarcadero Plaza were cleared to the Mission in 2016, so she fought for a Navigation Center that reduced the number of tents from 260 to 30 in her district.  She declared the major causes of homelessness were economic inequality and displacement, compounded for people with mental illness and substance use disorders; 38% of people discharged from Psychiatric Emergency Services were not connected with follow-up services, due to lack of communication among agencies operating in silos or lack of high quality data regarding availability of beds; and her rejection of SB 1045 housing conservatorship, which targets homeless people with dual diagnosis, whose presence on the streets of San Francisco have increased visibility.  (A week after her keynote, Mental Health SF was revised to limit its scope in a compromise with SF Mayor.)  

Susie DuBois, MFT, presented on the development of a drop-in support group for Family & Friends of People with Hoarding & Collecting Behaviors.  Five years ago, SF Department of Aging & Adult Services provided funding to start support group, which evolved from 6 weeks in 2015 to 14 weeks.  There is a two-hour orientation session for new members; each two-hour session includes 1^st hour didactic on topic in lecture/discussion, 2^nd hour open group sharing & support.  About 5 to 14 participants attend, ranging from age 19 to 75.  The model curriculum includes: 

·       Family and Personal Vulnerabilities: genetic predisposition, executive function deficits; trauma, scarcity, loss; learned about possessions, acquiring, anti-organizing; lack of skill how to discard, maintain; mental health issues

·       Relationship Issues: communication; high conflict/passivity/avoid conflicts (couple); co-dependence/control; lack of connection; power imbalance; blame & responsibility; standoff

·       In-Home Issues: turf wars; loss of control; conflict; clutter-blindness; mutual avoidance/standoff

·       Community and Social Issues: shame & embarrassment; isolation; lack social norms; difficult find support; neighbor & landlord conflict; involving social services; secret keeping

·       Accommodations: OCD scale/symptom severity

Lunch & Learn Q&A with Esme Weijun Wang, author of The New York Times bestselling essay collection, The Collected Schizophrenias (2019).  She discussed the mental health stigma of “schizophrenia terrifies” due to psychosis that results in later discharge from hospitals.  In contrast, people with anxiety, depression or eating disorders are reframed (almost mainstreamed) as having “attention to details” and “empathic concern.”  Schizophrenia is commonly diagnosed during young adulthood, and colleges find it difficult to deal with mental health issues.  As a Yale student struggling with mental illness, she was hospitalized against her will.  She talked about the loss of dignity in involuntary hospital stays, which resembled prisons; her need to access outdoors and fresh air.  Her self-care/wellness plan includes medications, therapy, journaling, dressing well to restore dignity, support system, and "wonderful dog."

Human rights advocate Kirsten Irgens-Moller left SFSU’s MSW program over 30 years ago to co-found Global Exchange and serve as its Executive Director, then returned to complete her MSW degree in 2015, with a field placement that turned into employment at Ombudsman Services of San Mateo County (OSSMC)! OSSMC advocates for the rights of 10,000 residents in LTC facilities in San Mateo, accomplishing 5,000 unannounced visits in the past year.  When Kirsten interviews field ombudsman candidates, she asks “why do you like old people?”  The responses often relate to experiences with a grandparent and love of stories/wisdom.

Senior & Disability Action’s Housing Collaborative celebrated victory of Proposition A, which funds $600 million for affordable housing bond, including $150 million for senior housing! SDA members called 2,500 senior voters to support Proposition A, which passed with 71% of votes.  Gen Fujioka, Policy Director at Chinatown Community Development Corporation (CCDC), which houses 2,379 seniors age 65+, representing 53% of its low-income residents, talked about Senior Operating Subsidy (SOS), need to increase senior housing (currently representing only 12% of housing pipeline) and for public oversight of Mayor’s Office of Housing. 

Jen Low, legislative aide to Board of Supervisors President Norman Yee, talked about plan to construct a 200-unit affordable continuum of care campus at Laguna Honda: senior independent housing, assisted living, and an intergenerational early childcare education center with adult day health center.  She also spoke of need for data to organize for transparency and accountability, such as a comprehensive needs assessment, income levels, wait list for BMR housing, etc.