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.