“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 5th
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 1st
hour didactic on topic in lecture/discussion, 2nd 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.
