Harold and Maude

 

https://www.youtube.com/watch?v=-L0dIOxLhbk

With this month’s 50^th anniversary of Harold and Maude (1971) and announcement of the upcoming film soundtrack release by Cat Stevens/Yusuf, I decided to revisit Harold and Maude through clinical social work lens.  

“Clinical social work is a specialty practice area of social work which focuses on the assessment, diagnosis, treatment, and prevention of mental illness, emotional, and other behavioral disturbances.” –National Association of Social Workers 

Hey, what about focus on whole person in environment?! Though my job description involves clinical social work, I continue to view myself foremost as a gerontologist working with older clients (and their families/significant others) to understand what’s important for their quality of life and helping them navigate the dysfunctional long-term care system.  

As a first year MSW student (back in pre-pandemic times), I chose Harold and Maude, a funny and touching film celebrating an intergenerational relationship, in a DSM (Diagnostic and Statistical Manual of Mental Disorders) course assignment to conduct a biopsychosocial analysis of a film character. This clinical lens nearly ruined my film watching experience, but I will not let clinical social work ruin my affinity for working with older adults!!!

Harold and Maude:  Clinical Analysis of Harold and his Mother

Based on the character/characters, provide a biopsychosocial analysis of the character/characters of the film you chose.

            Harold and Maude showed only a week in the life of Harold, revealing little information about his earlier life, and even less about Harold’s mother, Mrs. Chasen.  My analysis will focus mostly on Harold, and a bit about his mother who was influential in Harold’s development before he met Maude.

A.    What is the diagnosis of the main character/characters and what type of symptomatology was present that led you to come to this assessment? When coding the diagnosis, use the ICD-10 coding. If there was not a diagnosis, you can use a provisional diagnosis and explain why you chose a provisional.   

            Prior to meeting Maude, Harold’s diagnosis appeared to be other specified depressive disorder, depressive episode with insufficient symptoms (F32.8), as indicated by his depressed affect and at least one of the other eight symptoms of a major depressive episode associated with clinically significant distress or impairment that persisted for at least two weeks: recurrent thoughts of death (American Psychiatric Association, 2013, pp. 183-184).  Harold appeared obsessed with death – attending funerals of strangers, driving a hearse, and staging at least 15 suicides.

            Harold’s domineering socialite mother, Mrs. Chasen, appeared to have a diagnosis of narcissistic personality disorder (F60.81), as indicated by her pervasive pattern of grandiosity, need for admiration, and lack of empathy; she had a grandiose sense of self-importance, believing that she is superior and should associate with other high-status people, had a sense of entitlement, lacked empathy, and showed arrogant behaviors or attitudes (American Psychiatric Association, 2013, pp. 669-670).  She appeared mostly insensitive to the needs of her son, responding to his staged suicides with indifference, like rolling her eyes while swimming past Harold when he was floating face down in their pool, and remarks such as “be a little more vivacious” when Harold was gagging with a noose around his neck hanging from the ceiling in their home.  She appeared self-absorbed with social events and maintaining social status, including controlling her son’s.  After finding a computer dating service that “screens out the fat and ugly, so it’s obviously a firm of high standards,” she proceeded to complete the dating questionnaire with her own answers.  She unilaterally replaced Harold’s beloved hearse with a sportscar, which she perceived as more befitting for her young son.  

B.    If you were using a specific assessment or screening tool, which would you use to elaborate on your assessment?  

            For baseline screening, I would use PHQ-9 for Harold’s depression and P4 for suicidality.  Prior to meeting Maude, Harold could self-report affirmatively to the following two PHQ-9 items, which support other depressive disorder:  Feeling down, depressed, or hopeless; and Thoughts that you would be better off dead, or thoughts of hurting yourself.  Harold expressed suicidal ideation and staged fake suicides not for his mother’s “benefit,” as he told his psychiatrist, but perhaps for his benefit to dramatically re-create “death” to gain his mother’s attention/affection (see F below).  While Harold had past suicide attempts and plan for suicide, preventive factors outweighed his probability of carrying out suicide. The fact that Harold kept himself alive through his staged suicides suggests that he was seeking more from his existence than his basic physiological and safety needs provided by his affluent mother, such as seeking to satisfy higher needs of belonging, esteem and self-actualization.  Harold appeared obsessed with death as an escape from his stultifying existence controlled by his emotionally cold mother. 

            Screening and assessing Harold’s mother for narcissistic personality disorder using her self-report is challenging because of the subject’s limited self-awareness and purposeful deception.  Instead, I would make a clinical judgment based on observations and DSM-5 criteria. 

C.    If substance use was part of the coping mechanism for the character/characters, how did it play a role with their overall symptoms? 

            Maude encouraged Harold to consume “after-dinner liquor” (alcohol = depressant) and smoke hookah (nicotine = both depressant and stimulant) in the context of sharing an activity, though straitlaced Harold said he didn’t drink and considered smoking a vice.  Maude seemed to market substance use as a coping mechanism to liberate Harold from being “too moral,” thus getting cheated out of “too much life” so he felt dead inside, or depressed.  Harold’s reluctance to partake in substance use likely alienated him from social conformists, especially during the early 1970s when hookah was popular and evidence of health dangers were not well-known at the time. 

D.    How would you engage with this individual/individuals in order to establish a strong therapeutic alliance?   

            To establish a strong therapeutic alliance with Harold, I would use Carl Rogers’ person-centered approach of showing unconditional positive regard for his well-being and empathic understanding through active listening and creating a safe space for Harold to express himself.  I would greet Harold with a warm smile, “Hi, I’m Awe Some.  How are you doing?”  I would observe and listen to Harold’s response.  Then, I would offer, “Would you like some water to drink?”  This introduction would set the tone for a safe, supportive environment by being courteous and attentive to Harold’s needs as a person.  Offering water demonstrates hospitality and encourages Harold to freely talk without undue concern about thirst.  Next, I would motion to a chair and offer, “Would you like a seat?”  Then, I would try to sit at a 45-degree angle from Harold for eye contact while placed less confrontational than directly in front of him.  This would be in contrast to Harold’s visits to his psychiatrist, who were not seen exactly eye-to-eye:  side-by-side so they had to awkwardly turn their heads to face each other, or Harold laying on the chaise staring at the ceiling and later sleeping.

            To meet Harold where he is, I would express my condolences to Harold over Maude’s passing, and adopt a cultural humility approach—assume nothing, be curious and interested in learning about Harold’s uniqueness in all its complexity.  As a guide, I would use the Cultural Formulation Interview (American Psychiatric Association, 2013, pp. 752-754).  Since individuals respond to loss in their own way, I would seek to understand Harold’s perspective and ask him how he is feeling about Maude’s death and his purpose in seeking therapy: “What brings you here today?” This open-ended question would allow Harold to respond with his own agenda, empowering him with autonomy and choice.  To respect his self-determination, I would communicate as a facilitator by suggestion, instead of direction, using motivational interviewing’s OARS:  Open-ended questions, Affirmation, Reflection, Summaries.  This approach is in contrast to Harold’s condescending psychiatrist (who lectured Harold, “I find you a very interesting case, but this reluctance on your part is detrimental to the psychoanalytic process”) and judgmental priest (who condemned Harold’s proposed marriage to Maude, ignoring their spiritual relationship and expressing disgust as he imagined their physical intercourse without goal of procreation—Harold’s “firm, young body co-mingling with” Maude’s “withered flesh, sagging breasts, and flabby buttocks”).

            Maude appears to be the only person who connected with Harold in any meaningful and reciprocal way, so seeing how Maude was able to draw out Harold, I would be authentic, use gentle humor and questioning as well as empathic listening to provide space for Harold to express himself including reminiscing on Maude’s influence and even making a list of Maude’s most memorable quotes for reference to feel better (see strengths and healthy coping mechanisms under G below).  I would encourage Harold, if ready, to continue exploring to find out what he wants, including sources of inspiration, joy, and purpose.  This approach is based on a strengths model focused on his existing resources. Finally, I would validate Harold’s strengths (see G below).

            I would be cautious in engaging with Harold’s mother because people with narcissistic personality disorder may lack insight so they may deny having any personality disorder. Mrs. Chasen appeared content with maintaining her status quo—a life of social events—rather than seeking to change herself, learn empathy through therapy, and develop a closer relationship with her son. 

E.    How did environmental factors play a role with the assessment? Describe how demographics, gender-sexuality, culture, housing, education, income, spirituality, biology and social support in general contributed to their psychosocial stressors and strengths?   

            Harold appeared to be an adult teen or twentysomething single heterosexual white male from a socio-economically privileged family background.  He attended boarding school and lived with his socialite mother in a mansion in the San Francisco Bay Area, which may have restricted his socialization to this social class and conservative lifestyle.  He appeared to be an only child, isolated from peers, and surrounded by, but mostly ignored by, adults in his home (mother and servants) and at funerals of strangers.  Mrs. Chasen, Uncle Victor and psychiatrist provided nominal social support to Harold.

            According to his mother, Harold was a “delicate child” prone to illness and his father had a “sense of the absurd” such as getting arrested for swimming in the nude.  Harold’s domineering mother decided after “an idle happy life of a child,” it was time for Harold to take on “adult responsibilities” and marry from a sense of noblesse oblige.

            Harold appeared clean-cut, ectomorphic and neatly dressed in blazer, dress pants and mostly oxford shirt with tie or turtleneck.  He was polite, introverted, quiet and sometimes morose.  His attitude was respectful and cooperative, following the rules and keeping appointments with dates—though with some rebellion, such as pulling pranks (self-immolation, chopping fake hand, and hara-kiri) to sabotage his mother’s plans for him to take on “adult responsibilities” like meeting prospective suitors through a computer dating service and enlisting him in the Army through Uncle Victor.  He also repurposed the sportscar his mother bought him into a hearse.  His rebellions were evidence of his intelligence, particularly his cleverness in staging realistic suicides and mechanical ability with redesigning the sportscar into a hearse.

            Harold presented wide-eyed, alert and oriented x3.  He was reticent, spoke in measured words, monotone, articulate manner.  His mood was mostly calm and euthymic, but uplifted in the presence of energetic and refreshing Maude who befriended him a week before she took her own life.  Even Harold’s pale skin tone acquired some coloring after meeting Maude.  His affect was mostly flat, detached.  He appeared to be going through the motions of what his repressive mother expected of him, a stifling situation that was probably “killing him” deep down inside.  He was unemployed, seemingly lacking purpose or meaning in his life.  When asked by his psychiatrist what he did for enjoyment, Harold replied he attended funerals; and he visited junkyards and observed demolitions. 

            Harold’s attendance at funerals might suggest yearning for spirituality, something deeper than the superficiality of his fleeting physically comfortable existence.  (Think Ecclesiastes 7:2: “It is better to go to the house of mourning, … for that is the end of all men; and the living will lay it to his heart.”)  At funerals, there is reflection on the deceased person that gives meaning to life and inspiration for the living on how they would like to be remembered.

            Harold’s mother appeared to be a WASPy, middle-aged widow, svelte and attractive, with perfectly coiffed hair and elegant dress.  She was self-absorbed, defensive, alert, oriented x3.  She was talkative; spoke fast, strong and clear.  Her mood and affect were detached; her thoughts appeared related to maintaining her social standing.  She expressed concern for her son by helping him find a wife and vocation in the Army, but otherwise she appeared self-satisfied.  

F.     Was there a history trauma/oppression that played a role in your overall assessment?  

            Though not explicitly addressed in the film, it’s possible that Harold’s depression—appearance of being socially withdrawn, emotionally restricted and numb and lack of interest in anything outside of death—could be related to a history of trauma from the loss of attachment to a supportive parent figure.  Mrs. Chasen’s apparent indifference might be a source of trauma/oppression as Harold related that “I haven’t lived, but I’ve died a few times”:  while in his boarding school’s chemistry lab, he accidentally caused an explosion leading police to assume he was killed so they informed his mother who reacted by collapsing into the arms of police; this was when Harold decided he “enjoyed being dead,” crying for his mother’s attention through staged suicides.  At times, Harold’s mother appeared to control Harold’s life: eating beets, finding a wife and vocation, buying a car, etc.  Harold did not mention his father, whose role in Harold’s life is unknown.                 

G.    What type of strengths and healthy coping mechanisms did you find in the character/characters?     

            Harold’s strengths are his personal qualities of being earnest, open-minded, empathic with a strong sense of morality; for example, he respectfully told Maude that driving off with strangers’ cars was “upsetting people, I don’t know if that’s right.”  Harold was open to forming a friendship with a more experienced older woman Maude, and learning her life’s lessons on how to live more fully in the process, so adaptation was his healthy coping mechanism.  In contrast to Harold’s escapism, vivacious Maude embraced life – attending funerals as a celebration of life – and showed him life is worth living and savoring with all senses (playing banjo for listening ears, painting for seeing eyes, odorific for smelling nose, etc.), nature (saving suffocating tree from city street and replanting in forest) and adrenaline-inducing experiences (though Harold questioned Maude’s stealing and reckless driving).  As an accomplice to Maude’s pranks, Harold began to consider her advice to take chances in life and get outside of himself to “look for new experiences” and “can’t let the world judge you too much.”  Maude did not appear tied to social conventions but appeared content to live a hedonistic life on her own idiosyncratic terms.  Reflecting on this might help Harold recognize that being true to oneself like Maude might be an alternative to seeking attention from his phony mother. 

          Just as Maude liberated the canaries from cages, we see Harold begin to break out of his existential crisis, becoming more expressive and open to new life experiences.  If Maude could survive the Holocaust (not mentioned, but suggested by her numbered tattoo in the scene when Harold holds her hand) and take back control of her own life, then Harold also could survive and take control of his own life, liberated from the strictures of his controlling mother. 

            In her irreverently charming manner, Maude used cognitive behavioral therapy to change Harold’s outlook and attitude, opening up possibilities that helped him cope with his depression.  When Maude asked him what kind of flower he would like to be and Harold pointed to a bed of daisies explaining “because they’re all alike,” Maude taught him to pay closer attention to observable differences, a metaphor for how each person is unique; and how much of the world’s sorrow come from people who are unique but allowed themselves to be treated otherwise.  Another example was when Harold faced despair over being enlisted in the U.S. Army, Harold partnered with Maude to make fun of the situation with Harold faking his passion for killing and feud with pacifist Maude, which ultimately persuaded Uncle Victor that Harold was not of sound mind for Army service. 

            Harold demonstrated strength in ignoring the superficiality of his mother, Uncle Victor, his psychiatrist and the priest who mainly noticed the age gap between Harold and Maude.  When Harold declared his love for dying Maude while riding in the ambulance, she encouraged him, “Go love some more!”  Harold was able to cope with death, which he did not deny or fear, and Maude helped him to accept death by viewing burials and birth as part of the “great circle of life.”  Maude hinted that she planned to end her life on her 80^th birthday on several occasions, including their first meeting (“80 years old, good time to move on, don’t you think?”) and advising not to get attached because “here today, gone tomorrow!”  

            Near the end of the film, we see the change in Harold, who had been nonchalantly faking suicides, but then reacted with real concern to Maude’s real suicide by rushing her to the hospital.  After Maude’s death, we see Harold speeding in his hearse that plunges off a cliff, which is another fake suicide as we see Harold on the cliff playing the banjo while skipping about like his mentor Maude who lived life joyfully.  Within just one week, Harold transformed to be more like Maude with a changed perspective that is life-affirming, a strength that will help him cope as he moves forward, appreciating one day at a time, living life to the fullest. Harold evolved from a depressed young man, perplexed about existence, into a stronger, more confident man with greater peace of mind.

            Harold’s mother had strength to survive widowhood and be a single parent to an only child who seemed to exasperate her with staged suicides.  She coped by referring her son to male caricatures like the banal psychiatrist and militant Uncle Victor.  She also used the strength of her socio-economic privilege to move ahead in the world, ignoring most obstacles, which seemed to suit her.  

Intergenerational relationships 

For my assignment, I avoided looking for DSM-5 diagnosis in Maude character.  After all, Maude’s appeal is her nonconformity/anti-Establishment stance, which is pathologized under DSM. Instead, I chose to focus on the value of the intergenerational relationship: Maude as wise mentor to younger, less experienced Harold, who has been oppressed by authoritarian figures like his mother, priest, psychiatrist, Uncle Victor (like Uncle Sam recruiter for US Army) trying to “cure” his eccentricity instead of embracing it like Maude.

Media reports on mutuality of intergenerational relationships:

·       “88-year-old graduates college alongside his 23-year-old granddaughter”: Rene Niera, terminally ill and in hospice care, achieved lifetime goal of earning economics degree, begun in 1950s and resumed while studying alongside his granddaughter at community college and then University of Texas (Today, Dec. 23, 2021). 

·       “Roommates and best friends: She’s 101, he’s 78”: Martin Jacobs was 55 when his mother introduced him to 80-year-old Jean Milgram in 1999, bonding over mutual interests (J Weekly, Dec. 21, 2021). 

·       “Teaching university students to be ‘age-conscious’ could help address our eldercare crisis”: The gold standard of intergenerational learning is through service learning, when both (younger) students and older people collaborate on an shared activity (The Conversation, Nov. 18, 2021). 

Interesting observation: 79-year-old Maude (played by then 74-year-old Ruth Gordon) had same brown hair coloring like much younger Harold (played by then 23-year-old Bud Cort, almost same age as Cat Stevens). 

2021: “Year of gray hair” 

“Before gray hair you should rise up, and you must show honor to an older man, and you must be in fear of your God.”—Leviticus 19:32  

If Leviticus had included honor to an older woman (and not just older man!), perhaps older women wouldn’t wait for COVID-19 pandemic lockdown to accelerate granny hair trend? (Or use Bible translations that refer to the elderly, old person, older people, the old, the aged, etc.)

Vogue (not quite an authority like the Bible) proclaimed 2021 “The Year of Gray Hair” with women embracing their natural changing hair color during COVID pandemic.  Several actresses wondered why can’t women be more like men who already “embrace” beautiful/exquisite gray hair?  

I feel better like this. Honestly, it’s exhausting to have to be something that you no longer are. I was finally like, “You know what? I’m not young. And I’m okay with that …I was looking at pictures of men, where they’re just their age, they’re normal, and we think they’re beautiful. I thought, okay, I may age and I want to be beautiful. So that’s where I got my “manspiration.”--Andie MacDowell (age 63), Interview (Oct. 19, 2021) 

There’s so much misogynist chatter in response to us that would never. Happen. About. A. Man…Does she have gray hair?’ I’m sitting with Andy Cohen, and he has a full head of gray hair, and he’s exquisite. Why is it okay for him?... It almost feels as if people don’t want us to be perfectly okay with where we are …whether we choose to age naturally and not look perfect, or whether you do something if that makes you feel better. I know what I look like. I have no choice. What am I going to do about it? Stop aging? Disappear?—Sarah Jessica Parker (age 56), Vogue (Dec. 2021) 

Today’s announcement of Betty White’s death at age 99 made me think I want to age like she did, more about her character than appearance.  

Don’t try to be young. Just open your mind. Stay interested in stuff. There are so many things I won’t live long enough to find out about, but I’m still curious about them.—Betty White (1922-2021), “Betty White, TV’s Golden Girl, dies at 99,” Associated Press (Dec. 31, 2021) 

https://www.youtube.com/watch?v=D9_wIu8ePxs&t=4s  

Judy Chicago, 82-year-old feminist artist with white/purple hair, has her own retrospective show at de Young Museum. She noted the female experience has been marginalized, so her work has been to intervene to “move art world where everybody’s voice matters.”

“What if women ruled the world?... Would old women be revered?”

--Judy Chicago, The Female Divine (2020) 

In The Female Divine (2020), Judy collaborated with all-women Chanakya School of Craft (Mumbai, India), which executed 11 velvet banners of hand embroidery and brocade, each asking rhetorical questions. More controversially, Judy’s smoke bomb show at Golden Gate Park was viewed as “radical hypocrisy.” 

Health is social

Oh my, omicron variant surge is here! Increasing COVID-19 cases and hospitalizations trending so another pause on home visits with clients, and return of universal indoor masking (though disappointed SF DPH adopted controversial CDC guidelines for shortening isolation time). According to CDC, 1 in every 100 older adults in USA has died of COVID-19, and more than 75% of COVID-19 deaths were people age 65+.  

Wonder when this world will embrace collective care (end vaccine apartheid!) rather than self-care? 

Here we go again, say Katherine J. Wu, Ed Yong and Sarah Zhang, in “Omicron Is Our Past Pandemic Mistakes on Fast-Forward” (The Atlantic, Dec. 23, 2021):

1.   We rush to dismiss it as “mild.”…but more transmissible virus can spread so aggressively that it ultimately causes more hospitalizations and deaths.

2.   We treat vaccines as all-or-nothing shields against infection.

3.   We still try to use testing as a one-stop solution…yet they need to be accessible, reliable and fast…COVID cases overwhelming USA’s frayed testing infrastructure.

4.   We pretend the virus won’t be everywhere soon.

5.   We fail to prioritize the most vulnerable groups…like older adults!

6.   We let health-care workers bear the pandemic’s brunt.

According to Ed Yong, public health needs to go back to its 19^th century progressive era roots of addressing societal weaknesses to prevent spread of epidemics (social solution for collective problem) v. relying on 20^th century germ theory that focuses on pathogens/vaccine solution.

“…public health began to treat people as if they lived in a social vacuum. Epidemiologists now searched for “risk factors,” such as inactivity and alcohol consumption, that made individuals more vulnerable to disease and designed health-promotion campaigns that exhorted people to change their behaviors, tying health to willpower in a way that persists today…

The biomedical view of health still dominates, as evidenced by the Biden administration’s focus on vaccines at the expense of masks, rapid tests, and other “nonpharmaceutical interventions.” Public health has often been represented by leaders with backgrounds primarily in clinical medicine, who have repeatedly cast the pandemic in individualist terms: “Your health is in your own hands,” said the CDC’s director, Rochelle Walensky, in May, after announcing that the vaccinated could abandon indoor masking…

If anything, the pandemic has proved what public health’s practitioners understood well in the late 19th and early 20th century: how important the social side of health is. People can’t isolate themselves if they work low-income jobs with no paid sick leave, or if they live in crowded housing or prisons. They can’t access vaccines if they have no nearby pharmacies, no public transportation, or no relationships with primary-care providers. They can’t benefit from effective new drugs if they have no insurance. In earlier incarnations, public health might have been in the thick of these problems, but in its current state, it lacks the resources, mandate, and sometimes even willingness to address them.”

—Ed Yong, “How Public Health Took Part in Its Own Downfall: The field’s future lies in reclaiming parts of its past that it willingly abandoned," The Atlantic (Oct. 23, 2021) 

Sounds awfully like medicalization of social work/clinical social work focused on professional self-care and pathologizing individual client instead of advocating to strengthen social safety net (universal basic income to lift people out of poverty, universal healthcare/long-term care system, paid sick leave, etc.). Need to put social back into social work!

https://www.youtube.com/watch?v=0QpjR6-Uuks

Yusuf Islam/Cat Stevens sounds and looks cool with gray hair at age 73! 

Now I've been cryin' lately
Thinkin' about the world as it is
Why must we go on hatin'?
Why can't we live in bliss?

'Cause out on the edge of darkness
There rides a peace train
Oh, peace train take this country
Come take me home again

              --Cat Stevens, “Peace Train” (1971) 

National Family Caregivers Month

According to Recognize, Assist, Include, Support, Engage (RAISE) Act Family Caregiving Advisory Council’s Initial Report to Congress (Sep. 2021): 

·       In USA, 1 in 7 people is a caregiver and more than 2/3 of people will need assistance with daily tasks as they age.

·       In USA, more than 53 million family caregivers provide approximately $470 billion in unpaid support annually for their loved ones to be able to live in their communities.

·       Family caregivers often provide support without a formal assessment of their needs or of the person receiving support; learn “on the job,” taking on complex medical, administrative and care coordination activities.

·       Lost income due to family caregiving is estimated at $522 billion each year.

Rosalynn Carter Institute for Caregivers’ Working While Caring: A National Survey of Caregiver Stress in the U.S. Workforce (Sep. 28, 2021) found that 1 in 5 full-time workers care for a family member with a serious illness/disability; nearly 20% of them quit a job to care for a relative, while 44% switched to part-time work. Rosalynn Carter has advocated for establishment of a new Office of Caregiver Health, within the U.S. Department of Health & Human Services, intended to improve coordination within the bureaucracy. 

My Administration is committed to strengthening American families and easing the burdens of caregiving.  That is why my American Rescue Plan provided an additional $145 million in funding for the National Family Caregiver Support Program,…also provided States with additional Medicaid funding to strengthen and enhance their home- and community-based services (HCBS) program.  My Administration’s Build Back Better agenda will build on this down payment by continuing to invest in the caregiving infrastructure for HCBS and increasing pay and benefits to address the direct care workforce crisis.  I will also fight to expand paid family and medical leave nationwide.  Each of these elements is critical to better supporting family caregivers.

--Joseph R. Biden, Jr., A Proclamation on National Family Caregivers Month (Oct. 29, 2021) 

It takes a village + infrastructure, like job-protected leave and healthcare coverage, to support family care partners.

·       Effective Jan. 1, 2022, California Family Rights Act (AB 1033) expanded to grant eligible employees up to 12 weeks of job-protected leave to care for parent-in-law with a serious medical condition. 

·       Effective Jan. 1, 2023, Parent Health Care Act (AB 570) will allow adult children to add their parents/step parents (who are not eligible for Medicare) as dependents to their individual health insurance coverage. 

https://twitter.com/CaregiverAction/status/1457888929127014402 

This year’s NFCM theme is #CaregiverAnd, which encourages family caregivers to “celebrate the passions and interests that enrich their lives.” 

During the COVID-19 pandemic lockdowns, many family caregivers were on their own without the usual respite supports from other relatives/neighbors/friends (as people formed their own pods/bubbles) and formal supports like home health/adult day centers/congregate care settings. Compared to non-caregivers during this pandemic, research found that family caregivers experienced higher rates of anxiety, depression and disturbed sleep; and reported less social interaction, more worries about finances and food, even after controlling for income and employment. Caregivers who fared the worst were female, young, lower-income, and providing care for people with cognitive disabilities (dementia) or behavioral/emotional problems. 

According to UCLA study, Who Is Caring for the Caregivers? The Financial, Physical, and Mental Health Costs of Caregiving in California (Nov. 29, 2021): 

·       In 2020, 1 in 4 California caregivers provided 20+ hours of care to a family member/friend in a typical week, yet only 1 in 11 received payment for any of the hours spent providing care

·       Majority of caregivers in California are women (57.7%), middle age or ages 26-64 (67.5%) and provide care to mainly older adults ages 65+(64.7%).

·       Nearly half (44.4%) of California’s estimated 6.7 million adult caregivers reported experiencing some level of financial stress in 2020 due to their role.

·       About 1 in 5 (20.9%) caregivers reported that caring for their relative/friend was somewhat to extremely financially stressful.

·       1 in 7 caregivers (13.5%) reported a physical or mental health problem within the past 12 months due to caregiving.

Aging boomers in later life have fewer family members to rely on for caregiving (due to never married, divorce, no kids, etc.). (China has recognized tradition of family caregivers, and “Confronted By Aging Population China Allows Couples To Have Three Children.”) 

“I’m a single woman, so I say mom has me, but I don’t have a me.”—Lily Liu, who took “gap year” from her job to set-up infrastructure of care for her mom, featured in AARP documentary, Caregiving: The Circle of Love (2016) 

AARP hosted Beyond the Burnout: A Morning Forum for Caregivers. Lily Liu, former AARP archivist/historian, has been caregiver for her 90-year-old mother diagnosed with Parkinson’s disease for past 40 years and more recently dementia; she decided not to bring home care aides during pandemic due to risk of infection. Lily talked about her nuclear family’s immigration from China to USA (her parents came for graduate studies when she was a child), thanks to 1965 Immigration Act. As a 1.5 immigrant family caregiver, Lily was imbued with Chinese cultural norm of filial piety (“even if I didn’t read Confucius, there was an expectation to care for elders in the family”) and challenges like having no extended family members to help out (but “family by choice”—someone acting like “big sister” as “accountability coach” before she reached burnout), linguistic barriers (terms like “MRI, UTI, and ADL are hardly understandable in English” and interpreting in another language), shift in power dynamic when providing care (“almost become a parent of your parent”), exploring trauma for Chinese immigrant parents who lived during 20^th century wars and civil strife, etc. 

(See Mission Local’s “For Mao survivors, the pandemic has been a cakewalk.” In 2015, Administration for Community Living awarded its first grant to develop “person-centered, trauma-informed” care for Holocaust survivors.) 

Patti Davis wrote her handbook + memoir, Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s (2021), based on her caregiver support group, Beyond Alzheimer’s (started in 2011) and caring for her father Ronald Reagan who died in 2004. After her attempt to license Beyond Alzheimer's into “AA of caregiver support” fell through, she decided to write her book to share lessons, like addressing grief (“you’re well-served to inhabit and surrender to grief early on…grief is not biodegradable, it will wait and come find you…”), looking beyond disease to essence of person (“Alzheimer’s is stripping away of façade… my father was sweet, gentle person so it was easier”), educating about disease and acceptance to take on challenges like taking away car keys (avoid 86-year-old George Weller’s 20-second drive through farmer’s market in Santa Monica killing 10 people, and injuring many others.) She broadly viewed a caregiver as someone who shows up to provide support; her father received homecare from paid caregivers when he was “bedridden” during last three years of his 10-year illness.

“Kupuna edge”

“When you’re a caregiver … you’re the nurse, you’re the physician, you’re the lawyer, you’re the chauffeur, you’re the accountant. You play all of these different roles that most people go to school and get a degree for, and you are expected as the caregiver to become all of that overnight and as the disease progresses.”— Poki‘i Balaz, geriatric NP, “Our Kūpuna, Our Kuleana: Senior Care Crisis in Hawaiʻi,” Hawai’i Business (Feb. 4, 2020) 

Growing up with kupuna (grandparents) in the same household, family caregiving was reciprocal: my grandparents cared for me and my siblings (while my parents worked outside of our home) until we became more independent, and then we reciprocated as my grandparents with dementia became more dependent on us for activities of daily living. This caregiver experience was more like something we grew into as needs arose, rather than “overnight.” And I suppose it helped that my grandparents had more than a single caregiver playing different roles, and benefited from many family caregivers with specialized roles including physician (though trained in OB-GYN; my cousin didn’t become a geriatrician until after grandparents died), lawyer, accountant, and we were all (non-degreed, but licensed) chauffeurs!

Last month, Hawaii Business magazine covered the role of kupuna in caring for grand keiki in a series of articles about Hawaii’s so-called kupuna edge:

·       "Grandparents Help Hawai‘i Parents Get the Job Done: Grandmothers and grandfathers are storytellers, sources of wisdom, keepers of family legacies and teachers. But perhaps their most important role in Hawai‘i is to help working parents raise their keiki.” 

·       "Do’s and Don’ts of Using Grandparents for Child Care: Lessons learned from both grandparents and parents about navigating these relationships.” 

·       "Grandparents Are Great, But They Can’t Solve All of Hawai‘i’s Child Care Needs: Hawai‘i’s high cost of living often drives the need for grandparent-provided child care. But many grandparents can’t provide care because they are still working or live on the Mainland. Here’s what else is needed.” This article noted that grandparents who are the primary caregivers for their grandchildren tend to experience worse physical and mental health than those who provide occasional or no child care at all. 

Kupuna might wish to exchange worse health for a stipend while serving in foster grandparent program and more low wage opportunities await them in proposed Caring Corps for older adults in charge of universal early childhood education?! 

This month, the Advisory Council to Support Grandparents Raising Grandchildren (SGRC) released its Initial Report to Congress. Highlights:

·       In USA, 2.7 million children are being raised in the homes of grandparents.

·       The child welfare system increasingly relies on kin or grandfamilies to provide care for children, yet they are less likely than non-related foster families to receive needed supports and services.

This report also provides recommendations that will inform development of the National Family Caregiving Strategy.

As COVID-19 pandemic seemed to accelerate hospital discharge preference of patients to go home rather than receive rehabilitation care from a skilled nursing facility (SNF), some exciting Home- and Community-Based Services (HCBS) policy proposals: 

·       Choose Home Care Act of 2021 (S.2562/H.R. 5541) would increase access to health services at home by giving eligible Medicare beneficiaries the option to choose home-based extended care as an alternative to SNF care after being discharged from the hospital. 

·       Justice in Aging is advocating for change in federal Medicaid law to apply retroactive coverage of HCBS services after hospital discharge, just as Medicaid allows services to be covered up to 3 months for SNF. 

Advance care planning

Geriatricians are expert at managing syndromes that are associated with age (e.g., dementia)… are good at deprescribing, looking at list of medications and possibility of interactions…eliminating what’s not necessary… really useful if multiple chronic illnesses… key to good care as we get older is constant, ongoing communication with your doctor… about what you want, how aggressive you want, that trade-off between things that might possibly prolong life versus side-effects and quality of life.

--Jay Luxenberg, MD, On Lok Chief Medical Officer, “Do We Need New Doctors As We Age?” Not Born Yesterday podcast (Oct. 15, 2021) 

UCSF geriatrician Dr. Anna Chodos presented on Advance Care Planning (ACP): how to make decisions based on context (emotions, needs, resources), personality, values, and experiences.

ACP includes medical and financial/legal considerations.

Wonder how many people attended this webinar? I asked all 4 questions! Answers:

·       Even if elder orphan is unable to name a surrogate, it is appropriate to document that person’s preferences—even if “terrible system” for people who are not going to have an advocate, POLST may or may not be useful.

·       “Many of us deal with people who are really complex and seem to have a lot of wishes for what life is like now that don’t match up with what are some stated long-term goals like living forever, getting better…it’s a process we continue to revisit…most people do not like thinking about the hard stuff…Most people don’t get the point, they don’t understand what the heck we’re asking them to do…completing advance directive takes at least a half hour, if not an hour.” 

·       “Assuming they have a program where you can live forever,…what most religions promise people. No, I haven’t started referring people to Jehovah’s Witness programs, but I hope that was like a cheeky question…they’re plenty of religions that have very specific requirements for how people get healthcare.” 

According to AARP, Hawaii has 157,000 family caregivers providing $2.1 billion value of u(n)paid care! AARP HI Pre-Crisis Planning for Dementia featured elder law attorney Laurie Adamshick, who shared her family caregiving experience. 

For solo agers (“elder orphan” without family caregiver), she advised hiring a professional fiduciary. 

Chinese American Coalition for Compassionate Care (CACCC) and AACI hosted Chinese American Cultural Challenges at End of Life (EOL) presented by Esther Luo, MD, Kaiser Permanente palliative care specialist. According to Pew Research, Asians are the fastest growing racial/ethnic group in USA, and Chinese are the largest Asian origin group making up 24% of this group.

According to California Health Care Foundation’s Help Wanted: Californians’ Views and Experiences of Serious Illness and End-of-Life Care (2019), majority of Californians at EOL do not want to “burden” family, want to die at home, prefer “natural death” and do not want to suffer pain.  

Compared to whites, Chinese Americans receive more aggressive EOL care including invasive mechanical ventilation when hospitalized and deaths in ICU so fewer die at home.

Few Chinese Americans enroll in hospice due to cultural challenges, including finding providers with cultural sensitivity (honor family-based v. individual decision-making) and language fluency. About 25% of Chinese Americans live in traditional multigenerational household; modern Chinese family structure is more like the family depicted in The Farewell (2019) film: adult children live separately from aging parents, varying acculturation (immigrant with limited English so gaps in communication with USA-born children/grandchildren), working adult children may have limited time for direct care, so more common to hire or place elder in care home.

Traditional filial duties might include nondisclosure to protect psychological well-being of elderly parent; advocate for aggressive treatment to prolong life; pressure to perform duties to avoid disapproval of community (save “face”); provision of food at EOL as cultural obligation to demonstrate love and care. 

“New” approach to filial piety involves ACP with parents initiating discussion and decision-making in context of not being burden to family, and reframing love/care by honoring elders’ wishes. 

Good death is part of 5 blessings, along with love of virtue, longevity, wealth, health. To traditional Chinese, components of good death are defined by one’s accomplishments of familial responsibility; “natural death” in old age; minimal suffering and free from pain; and maintaining good family relationships. 
 
Dr. Luo recommended indirect communication preferred when discussing EOL: use another person’s EOL experience; frame discussion as standard question and  part of routine care; acknowledge cultural taboos and ask for permission (e.g., some may fear invoking “bad luck” if they discuss death, or talking about death might invite death to come sooner); use provider’s own experience as example. 

Last month, I completed mandatory First Aid/CPR/AED training. During COVID-19 pandemic to prevent contamination, rescuers place material over the victim’s mouth and nose. This mannequin did not look like Resusci Anne. 

During COVID-19 pandemic, call 911 and stick to compression-only CPR: check for response, check for breathing (look; careful about exposure if you listen and feel), then start chest compressions 100-120 beats per minute to the rhythm of BeeGees’ Stayin’ Alive! Use AED defibrillator. 

SF DPH COVID-19 data before Thanksgiving/National Day of Mourning gatherings.

Ageism in healthcare

Kaiser Health News’ Navigating Aging columnist Judy Graham moderated stimulating 90-minute panel discussion, Confronting Ageism in Healthcare: A Conversation for Patients, Caregivers and Clinicians. What we can do:

·       Louise Aronson, MD, UCSF geriatrician and author of Elderhood: suggested how to communicate with provider to get your needs met—e.g., “I feel that I’m not getting attention my symptoms warrant (use “I” statement), and I came to you because of your reputation as a good doctor” (compliment!). And she incited us to “make a ton of noise and don’t shut up until things change…that’s how other social change movements succeed, own it, be noisy. Let’s do it!” She added Essential Caregiver Bill (HR 3733) in Zoom chat box. 

·       Michael Wasserman, MD, geriatrician and immediate past president of California Association of Long-Term Care Medicine (CALTCM): encouraged us to “speak truth to power”; called out federal government spending $10 billion a year subsidizing graduate medical education, but failing to train doctors to care for Medicare beneficiaries; the failure to develop policies focused on older adults due to the lack of geriatric expertise among policymakers (notably, failure of Biden administration to appoint gerontology expert to COVID-19 task force)—“honestly, the federal government didn’t listen, and now we have over half a million deaths amongst older adults from COVID and close to 200,000 of them from nursing homes…honestly, the policymakers don’t seem to care.” (The lack of gerontology expertise proved fatal in nursing homes that cut off family visits since March 2020 through Nov. 12, 2021 when finally CMS lifted visitor restrictions in nursing homes.)  

·       Rebecca Elon, MD, geriatrician and family caregiver (see “Aiding Her Dying Husband, a Geriatrician Learns the Emotional and Physical Toll of Caregiving”): recommended starting local and with groups for a louder voice!

·       Javette Orgain, MD, family physician and medical director for Longevity Health Plan of Illinois: called for intergenerational living, closing technology gap, increased funding of home-based care and improving nursing homes!

·       Jesse Mauer, JD, Executive Director of Maine Council on Aging, which promotes Anti-Ageism Pledge: advocated to include age in every DEI (diversity, equity, inclusion) conversation to “help us move collectively together”! (Check out recorded 2021 Wisdom Summit: Embracing a New Normal, Bouncing Forward to Build an Age-Positive Maine.) 

Despite anti-ageism guide to language tip, “do not use ‘elderly’ as a reference to a group,” transcript showed use of “elderly” in reference to a group almost interchangeable with “older adults” in same sentence:

·       Dr. Orgain said she “began care for older adults prior to becoming a physician, so I had some experience there that fostered my love for the care of the elderly.”

·       Judy Graham asked Dr. Orgain about “the lack of resources and what that says about how we approach our elderly population and what it means for those older adults.”

Maine’s Anti-Ageism Pledge includes “call attention to ageist language,” which depends foremost on what “the person wants to be described” as an equity consideration, and otherwise “refer to people over 60 as older people instead of seniors or the elderly.”

[Similarly, University of Iowa researchers Clarissa A. Shaw, PhD and Jean K. Gordon, PhD, advocate for an individualized, person-centered approach to communication accommodation based on person’s preferences and needs, not stereotypes of aging; for example, not all older adults find “elderspeak” (which arises when caregivers take on parental role) to be patronizing, particularly when it facilitates comprehension (e.g., slow speech, simplified sentence, long pause, loud voice, repetition, etc.). Otherwise, elderspeak is harmful!] 

Judy Graham summarized efforts to address ageism in healthcare: remove old age as a cause and symptom of disease; identify ageist beliefs and language (Frameworks Institute); tackle ageism at grassroots level (Changing the Narrative); require geriatrics education for medical students; include older adults in clinical trials; bring in geriatrics expertise; build age-friendly health system. 

Joined screening of 16-minute video premiere of Changing the Narrative’s Antidotes for Ageism: A Brief Guide to Creating Inclusive Care in an Ageist Society, followed by discussion with talking heads from video. Take-aways:

·       Our age does not define us (so stop attributing everything to “growing older”); instead, age-inclusive healthcare starts with caring for people as individuals because “every person is living a unique human experience.” 

·       “If you are receiving care: Talk to your provider. Ask questions. Your goals shape the course of your healthcare. Clarify what you value to avoid under- or over-treatment. Advocate beyond conversations with healthcare providers.  Seek care providers that truly listen to you, and support your vision for your health.” (Can this be done in typical 15- to 20-minute visit?!)

·       “If you are a healthcare professional: Active listening and letting patients guide care.” 

Geriatrician Jeff Wallace, MD, advised: “Get to know the patient, whether they’re age 20 or age 80, and get the background, and that’s the fun part in many ways, to learn about your patient to start…the therapeutic relationship with a patient starts with respect. You have to respect them, and they have to respect you…doctors should be interrupted more often…it’s okay to say, ‘let’s just timeout, and I really want you to focus on this.’”

Consultant Carolyn Love said she understood that doctors and nurses are medical experts, but patients are experts of their own body so providers need to listen.

Gilliane Lee, recent graduate of occupational therapy (OT), talked about shift to focus on safety as well as quality of life for older adults, and responded to following Q&A:

Q: What are some things that can be done to encourage more people to work with older adults?

A: “Bring them to assisted living facilities (ALF) and getting that exposure so that they can understand that there is such a need for providing care.”

Oy vey, will exposure to ALF for understanding “need for providing care” translate to encouraging more people to work with older adults? Possible to deter people from working in ALF setting like Brookdale, the nation’s largest senior living provider and target of federal lawsuit on behalf of 83 families alleging elder neglect and financial abuse, as well as lawsuit by California Attorney General?! As a graduate gerontology student, I watched Life and Death in Assisted Living (2013), PBS Frontline documentary that featured my instructor Pat McGinnis, founder and Executive Director of California Advocates for Nursing Home Reform; that horror show convinced me to stay away from for-profit ALF!  

“Too many assisted living centers, care centers, and nursing homes are places I would never allow a loved one to enter. Most wouldn’t either if they knew what the facilities were really like. However, families who schedule facility tours and interviews when considering placing a parent or grandparent, do not see that side…Families must learn to get behind the scenes in order to see the truth.” --Linda L. Schlenker, OTR, author of Aging in America: A Wake-Up Call and Call to Action for Seniors and Those Who Love and Serve Them (2008), calling out non-profit Mayo Clinic and St. Anne’s Home, Little Sisters of the Poor (SF) as exceptional

Been there, done that with my own stint working in ALF (non-profit, of course)! People who get behind the scenes by working in ALF see truth of “need for providing care”: understaffing, lack of staff trained in gerontology and experienced in working with older adults, low morale, high turnover, etc. Residents who wait too long for assistance end up trying to manage on their own, resulting in falls, bedsores, medication errors, other neglect.

Exposure to older adults segregated in ALF seems to reinforce warehousing people based on old age/disability. More encouraging to meet older people where they are in a variety of settings, listen and let their complexity grow on you until you decide this could be an interesting way to earn a living 😉!

Ageism in media

Ageism isn’t even recognized in Pew Research’s list of 15 biggest problems facing the nation; in contrast, racism and sexism make the list. 

November 2021 issue of The Journal of Gerontology: Social Sciences featured several articles about media coverage of aging and ageism.

In Aging Narratives Over 210 Years (1810-2019), Reuben Ng, PhD, found aging narratives in newspapers, magazines and nonfiction books have become more “negative” over 210 years, from “uplifting narratives of heroism and kinship” in the 1800s to “darker tones of illness, death, and burden” in the 1900s as older adults came to be viewed as dominant occupants of almshouses and described as deserted by their children and too infirm to work. Contributing to this ageism were the diminishing status of older adults, loss of warmth, loss of competence, social ostracism, and medicalization of aging. Defying this trend was fiction, which provided “positive” portrayals of older adults through romantic courtship and war heroism.

In Ageism in COVID-Related Newspaper Coverage: The First Month of the Pandemic, researchers analyzed 287 articles concerning older adults and COVID-19, published between March 11 and April 10, 2020, in four major U.S. newspapers (USA Today, The NY Times, LA Times, The WaPo), the term “ageism” appeared only five times and only in The NY Times opinion pieces, suggesting that journalists were not calling out ageism. 

This failure to call out or name ageism seems to normalize ageism so it’s not viewed as the problem it is with harmful impacts. 

Journalists continue to confuse assisted living and nursing home, needing to issue corrections like “This story has been corrected to refer to Brookdale as an assisted living and memory care center instead of a nursing home.”  In “The Forgotten Nursing Home Tragedy” (NY Times, Nov. 4, 2021), journalist stated “Nurses were routinely working at several elder-care facilities at once”—more likely the reality is lower-paid certified nursing assistants (CNA) who have closer hands-on contact with residents (assisting with toileting, bathing, dressing, feeding, etc.) work at multiple nursing homes? Important to understand differences: ALF v. SNF, CNA v. nurse.

Wish more journalists would follow reporter Laura Wenus’ advice to consult someone with expertise in the field because “elder care and nursing care is a complex industry” so it helps to turn to a second pair of eyes to ensure “using the right terms and describing the relevant systems correctly.” 

SF Dept. of Disability & Aging Services (DAS) hosted SF Dignity Fund Community Needs Forum (“What do older adults & adults with disabilities living in San Francisco need?). This took place on day after holiday weekend, 39 showed up on Zoom, mostly DAS staff; service providers who participated talked about workforce challenges like finding social workers who are Cantonese bilingual and who are familiar with African American culture. 

I completed 36-item SF Dignity Fund Community Needs Assessment survey, commenting on need for gerontology training in workforce development to better serve diverse older adults, like designing a more age-friendly survey! Wonder how many older adults/people with disabilities had stamina to actually answer all survey items: e.g., 5-item Likert scales for #6 Please rate your agreement with the following (19) statements about your needs; #17 Please rate your agreement with the following (15) statements about any barriers you have experienced when trying to participate in services. By the time I got to survey's demographic information section, I just wanted to get over ordeal so quickly selected "Decline to answer"!