This story is part of Taking Care, an ongoing series on the diverse lives of America's family caregivers, with support from The John A. Hartford Foundation."The TV doesn't work," my mother called out loudly. 
The author and her mother, Sarada Ramachandran, and the orchids at their home in Los Altos Hills, Calif.When I walked in to her room, she was standing in front of the television set with the remote in her hands. She raised her gaze to mine and her eyes were slightly moist. "I pressed the buttons like you told me, but it didn't work," she said. 
I took the remote from her, pressed 7-6-5, hit enter. The screen changed. 
"I've been trying to change that channel for the last fifteen minutes," my mother said plaintively.
My mother's gaze still always searches for me. In a roomful of people, she often notices only me.
In this year of shelter-in-place, my mother and I have had to refurbish and remodel our relationship — bouncing between helplessness, despair and buoyancy. Since late spring, each new day has forced on my mother and me a reckoning of how care is given and how care is taken, without a specific lesson for its resolution.
As a child, I never really had a deep or consistent connection with my mother. Most of my formative years were spent in a Catholic boarding school. Besides the impediments of language that developed, my mother and I had different interests, habits, tastes and beliefs. We had little to say to each other, other than the perfunctory. She was my mother; my love for her was wholly steeped in that relationship.
From India to California
When my father passed away, I packed up my mother's life in India and escorted her into mine in California. I was shocked to discover that she hadn't quite mastered the technique of crossing a busy Indian street, withdrawing money from her bank, ordering a new cooking gas cylinder or calling for a taxi. Yet, she read voraciously and displayed an irrepressible, gamine intelligence.
"Are you worried about living in America, Amma?" I asked her on the flight. "You're there," my mother responded, without a trace of anxiety.
The author Jaya Padmanabhan helps her mother down at their home in Los Altos Hills, Calif.In California, my mother began negotiating her new space the best way she could: through rote memorization. She learned to use a microwave by pressing the same buttons in the same sequence. She learned to operate a dishwasher and the shower in the same manner. She even got her citizenship this way — by memorizing all the questions and answers in the study booklet.
She took over the responsibility of feeding Mishti (our big, rambunctious goldendoodle) and watering the two orchids that were gifted to us over the years. Every morning, ritually, my mother would pour two cups of water into Mishti's bowl and an equal amount of water over the orchids. The orchids and the dog bloomed with her attention.
Time Went On, Needs Changed
The years passed. My mother's hearing deteriorated, and she refused to wear hearing aids, or anything "artificial" to compensate. Then her eyesight grew blurry and she lost peripheral vision. She had several small falls, and then, almost exactly a year ago, a catastrophic one on the hard stone floor, sustaining multiple pelvic fractures. She was hospitalized for several weeks. When she came back home, she gripped the handles of her new walker tightly in her hands.
I became my mother's caregiver, helping her with her showers, guiding her in figuring out her pills, organizing and preparing her meals, turning on her television, taking her for drives and downloading her favorite magazines onto her iPad.
Sarada Ramachandran turns on the television in her bedroom at her daughter’s home. "My mother began negotiating her new space the best way she could: through rote memorization," the author writes.I taught her the very same things I had taught her once before, a decade ago, but this time, the lessons did not stick. The challenge of handling household tasks that she had once effortlessly mastered became insurmountable.
My mother stopped feeding the dog. And for the first time in many years, the orchids looked thirsty.
I worried that the months of continuous quarantine would be isolating. They were. And her reliance on external stimulation gradually dwindled. 
Every day around noon, my brother calls our mother from Philadelphia. With her poor hearing, she is often eager to put the phone down as soon as she picks it up. Reading, too, has become intermittent. It takes too much effort to focus, my mother told me.
"There's no other human being on this earth who will ever have our backs like Amma does," my brother said, consoling me when I was in a low mood. "It's an unwavering trust in us," he said, and I was reminded of her words on that flight from India.
'A Brand New Understanding'
I hired a caregiver for a few hours a week to help her and keep her company, but my mother's gaze still always searches for me. In a roomful of people, she often notices only me.
My mother's dependency is often overwhelming. I feel like I am always on alert, day and night, listening for her to call out my name.
Mishti passed away in late August, and my mother's distress wrapped around my devastation at the totality of his absence.
With each new day, the gyre of her reliance on me seems to widen. "What should I eat for dinner?" "Can you turn the knob on the humidifier?" "Which day is it today?" "Should I sleep now or later?" "Will my stomach ache go away?" "Are you going out?" "When will you be back?"
My mother's frailty and vulnerability have disarranged her life, and mine. Yet this very disarrangement has forged a brand new understanding upon me; upon us. Our relationship will always be an imperfect one, but it rests on the twin pedestals of her trust and my caring.
Now if I can only convince her to water the orchids again.


Now That I Care For Her, I Feel For Her

Jaya Padmanabhan

“Do you have drumsticks?” my 85-year-old mother asks the cashier at the checkout counter at Madras Groceries in Sunnyvale, Calif.
The woman points to a pile of long, narrow, cylindrical vegetables near the counter. A half-hour later, a quick inventory of my mother’s cart reveals drumsticks, taro roots, squash, long beans, okra, winter melons, pointed gourd, snake gourd, spices, snack packets of murukkus and a bag of brown basmati rice.
Food bought, cooked, served and eaten is collectively the barometer of my mother’s moods, which are intricately entangled with her health. When she’s bustling around the kitchen, cooking sambar, kootuor olan with squash and winter melon, and boiling snake gourd or sautéing long beans to serve as a side dish, she’s cheerful and animated. On the days when the stove top stays cold, she sits near her bed dispiritedly, complaining about the insipid flavors of leftovers.
My mother, who immigrated to America in her late 70s from India, views the world through the lens of food. The act of eating or drinking is not only one of survival; it’s an emotional configuration. She is happiest when she has access to the foods she once ate back home, as though harnessing the taste of her memories.
The act of eating or drinking is not only one of survival; it's an emotional configuration.
She has never tried pasta, pizza, burritos, sandwiches or salads. Vegetables she has not encountered in her previous life are anathema, including mushrooms, broccoli or Brussels sprouts. She keeps a very close, if obsessive, vigil on her Indian vegetarian palate.
Preoccupied With Food
Gopala Pillalamarri worked as a journalist for 40 years in India before retiring and moving to Palo Alto, Calif., to live with his son and daughter-in-law in the 1990s. Now in his 80s, Pillalamarri has a long list of ailments and is confined to his room in his son’s house, needing round-the-clock palliative care.
When I met him, he was glancing over headlines in the local newspaper. A frail man, wearing a crisp white-striped shirt, he brightened when he saw me. “A daughter has come to visit,” he announced.
Pillalamarri grew up in Tenali, a city in Southern India, well-known for its spicy foods and pickles marinated in chilies. Until he came to the United States, he had never lived anywhere else.
“Have you ever tried pizza?” I asked Pillalamarri. “No western [food] for me,” he said, shaking his head with a mischievous smile. “It has no spice.”
Rita Ghatak, a psychologist and an associate director at the Optimal Aging Center in Palo Alto, is Pillalamarri’s daughter-in-law. With over a decade of experience directing Stanford’s Adult Aging Services program, Ghatak has observed that among immigrant families, one of the biggest preoccupations is food.
She noted that her father-in-law’s “food habits have not deviated, not even one standard deviation, from what they were when he was living in India.”
For many adults who migrate later in life, familiar foods close the gap between countries left behind and countries arrived at. Remembered flavors stave off a fugue-like state of withdrawal from the new environment. So tastes are preserved carefully.
When Pillalamarri had a nasty fall and had to be admitted to ManorCare Health Services in Sunnyvale to recuperate, he begged to be taken home. He couldn’t tolerate the hospital fare and looked listless and unhappy until his son began to cook and deliver meals to him every day.
The Link Between Cultural Isolation and Food
Globalization and immigration patterns are changing the makeup of older adults in America. As America ages, so does the immigrant population. By 2030, older adults will outnumber children. In 2010, more than one in eight adults 65 years and older was foreign born, according to the Population Reference Bureau.
The Migration Policy Institute reports that in 2010, California had the most foreign-born older adults (1.3 million) in the country. It is predicted that people of color, primarily Latinos and Asians, will make up 55% of California’s older population by 2035, compared to 41% today.
This changing population requires a rethinking and recalibrating of how we deliver elder care. While there is much research on older adults and social isolation, not much attention is paid to the issue of cultural isolation, and, in particular, its linkage to food.
Despite the lack of research, however, nutrition programs in California are aware of what it takes to satisfy older immigrant adults.
Milton Cadena, the program director at the Eastside Neighborhood Center in San Jose (a Senior Nutrition Program, or SNP, site run by Catholic Charities), said it mostly has Latinos in its program and that many of its menu options tap into this group’s preferences — chile verde, corn tortillas, Spanish rice, chicken enchiladas and more.
“When the food served at our centers mirrors the food [the clientele] grew up with, or are accustomed to, in their own culture, it is easier for them to accept it, and they appreciate it  —  and more importantly, do not waste it,” Cadena said.
At Stevenson House  —  a low-income senior housing project in Palo Alto  —  La Comida (Spanish for food) mostly serves an older Chinese population. On a recent menu, however, there were few Chinese options.
“One of the challenges is preparing Chinese meals,” admitted Mary Ruth Batchelder, site manager of the La Comida program. The prep work is complicated. There’s a lot of braising and marinating, and the ingredients are different.
“We cook baked fish, which is Chinese inspired. One of the problems is keeping it low in sodium and soy sauce,” Batchelder said, adding that La Comida is incrementally working toward a Chinese-inspired menu. But “our food doesn’t keep Asians away,” she said, while pointing at the room filled with Asian diners.
According to Judy Chang, a member of the board of La Comida, immigrant adults are willing to experiment with cuisine if they’ve been in the country long enough. Or if getting and preparing hot meals is a problem. “If you have to have a full belly, then you go with whatever you get, as long as it’s not offensive to your palate,” Chang said, and for many of the La Comida patrons, this is the only hot lunch they get.
'I Don't Like American Food'
Nourishment is merely the outer skin of the peeling onion that explains immigrants' complex relationship to food. What works for the native-born population will not necessarily work for the immigrant cohort.
Fresno-born octogenarian Hank Thielmann, of Ukrainian-Russian origin, lives in Stevenson House. He described his mother’s twice-baked crisp zwieback bread with equal parts sadness and nostalgia. “I’d slather butter and jam on the zwieback before eating it,” he recalled. He likes the food served by La Comida. “I choose to enjoy it,” he clarified. “But if you know of any Russian restaurant?”
Patty May is 90, and her translucent skin gleams in the afternoon light. She sits at the entrance of the dining hall, handing out bread to the La Comida patrons as they walk in, murmuring greetings in Chinese and English. She grew up in Oklahoma City, but lived in China for 15 years and prefers Chinese food. Her favorite meal at La Comida is Lion’s Head Meatballs, a Shanghai specialty made of pork and cabbage, though she likes everything served.
Like Thielmann and May, many aging adults are nostalgic for the foods of their younger days. But adults who migrate later in life feel alienated if the cuisine they are accustomed to is not available to them.
Huiming Tang also lives in an apartment at Stevenson House. “I pay attention to my food. I take it seriously,” he said through an interpreter. “I like Chinese food. I eat it all the time. I don’t like American food,” he said firmly.
Chinese food has bold complexity, Tang said. Each province in China lends its own aesthetics to the food. “The noodles in Shanghai are different from the noodles in Canton or Beijing,” and there’s more meat and vegetables in Chinese cooking, he said.
Tang came to America in the late ’90s to live with his son and daughter in the Bay Area after retiring from his job as a professor at Shanghai University. He cooked his own meals initially. When asked about his favorite La Comida meal, Tang picked up his utensils and cut into the marinated pork loin on his plate before responding, “I come here because I’m 88-years-old.”
San Jose resident Aida Vigo came to America in 1992 after retiring as a physician in Bataan, a city in the Philippines where thousands perished in 1942 during a brutal Japanese-enforced 65-mile march to prison camps. Vigo was four-years-old at the time and calls herself a child of the war. She grew up at a time when privation and scarcity were ways of life. Most people she knew ate only the food that they raised, with fish and vegetables being staples.
Vigo prefers simple flavors and fresh ingredients. When she first arrived in the United States, she often cooked adobo and sinigang for her children and grandchildren, both stock-based “one-dish meals” with fish, beef, pork, chicken or vegetables.
Waiting for her food to be served at the Northside Community Center near downtown San Jose, Vigo revealed why she comes here for lunch: “The cook here is Filipina. I know how she cooks it. The taste is not overpowering.”
Link Between Food and Socialization
Iggy Ignatius, chairman and founder of ShantiNiketan, a retirement community for Indian Americans in Tavares, Fla., is well on his way to building an empire on the simple premise that as immigrants age, they will want comfort food and a back-to-the-roots lifestyle. He is on his third phase of development, to be completed next year. The demand is so high, Ignatius said, that he’s begun to expand to other locations, including New Jersey, Houston and even Singapore. “The market will only grow,” he assured me. He has several California customers.
The biggest selling point is the Indian vegetarian food that ShantiNiketan offers, one of the few Indian-American facilities for older adults with an in-house kitchen. Ignatius believes that affinity retirement homes are not non-assimilative, but places where people go to spend their later years among people who share the same kinds of life experiences and are able to relate to each other.
That relational experience boils down to food and socialization. Ignatius echoed Ghatak’s theory on older adults and their preoccupations: “Food is the major concern for Indian-Americans, in my opinion, and then comes socialization,” he says.
Familiar Scents and Array of Colors
For my mother, who cooks for herself, food is a pipeline to her emotional and physical health. But I can see that her cooking days are numbered. Shopping for her favorite vegetables has begun to exhaust her, even though it’s her favorite place to go. My mother in an Indian grocery store is like a child in a candy store. Her eyes dart from shelf to shelf, taking in the familiar scents and array of colors. And she looks energized.
After paying for the groceries at Madras Groceries, my mother and I make our way a few doors down to Madras Café.
“How are you, Aunty?” the young man at the counter greets my mother when she steps forward to order a plate of vadas (deep-fried lentil balls) and chutney to take home. It’s one of the few restaurants my mother consents to eat at, and I soon discover why.
“I haven’t seen you in a while,” the man says in Tamil. My mother nods shyly without responding. As I help her to a chair, he goes in and comes back carrying a steel tumbler of steaming coffee. “While you wait,” he says, offering it to her.
My mother takes a sip of the coffee and looks at me, her eyes shining.
This article originally appeared on The Bold Italic and on the Diverse Elders Coalition blog.


Immigrants Take Comfort in Food From Their Homeland

Devyani Dave immigrated from India to California in 1995 in her early 60s to live near her son and his family. Her green card was sponsored by her son (who prefers not to reveal his name), a citizen who came to the U.S. in 1973. When Dave arrived to start her new life, she had no health insurance and relied on her son to support her. Now, sitting on a bench at Priya Living, a senior community facility in Santa Clara, Calif., Dave said she feels fortunate to be in close proximity to her only child, especially as she ages.
Devyani Dave immigrated to the U.S. in 1995 to be near her sonBut some immigration experts say the Trump administration’s new “public charge” rule, going into effect by the U.S. Citizenship and Immigration Services on February 24, 2020 nationwide, will no longer welcome people in similar circumstances as Dave. That’s because, the analysts say, it will deem them likely to become liabilities for America.
How the Public Charge Rule Will Change
Since 1999, federal immigration law has had a public charge test in place to deny people admission to the United States if the government identifies them as ones who may be "primarily dependent" on the government for support, either through cash assistance programs or long-term institutional care.
But the Trump administration is altering the definition of public charge. Under the new rule, any person who uses designated benefits for 12 months in any 36-month period might be considered a public charge. And the list of benefits has expanded to include Medicaid, Supplemental Nutrition Assistance Program (SNAP, formerly known as Food Stamps) and Section 8 housing assistance.
The “totality of circumstances” test will penalize people 62 years or older, making it “nearly impossible for older adults to pass the 'public charge' test under the new criteria.”
A public charge determination will be made at the time of applying for a green card or admission at the U.S. border by an immigration officer after considering a “totality of circumstances,” a discretionary weighting system looking at factors including age, health, family status, assets, education and skills.
The “totality of circumstances” test will penalize people 62 years or older, said Natalie Kean, senior staff attorney at Justice in Aging, a nonpartisan legal advocacy group addressing senior poverty, making it “nearly impossible for older adults to pass the 'public charge' test under the new criteria.”
Immigrants Who Might Be Most Affected
Kean and other immigrant analysts say the revised public charge rule will tilt negatively for immigrants with chronic health conditions or disabilities; those who are not fluent in English, and ones earning less than 125% of the federal poverty limit — that’s $21,138 for a two-person household.
With these stringent benchmarks, the new rule could have an outsize impact on low-income older immigrants of color, preventing some from becoming legal permanent residents in the country they live in or aspire to live in.
This will have “a ripple effect on their families who are here in the United States, as well as our communities in general,” said Kean.
When the Supreme Court ruled on January 27 to give the Trump administration the go-ahead for its public charge rule, a statement from the White House Press Secretary called the decision “a massive win for American taxpayers, American workers and the American Constitution.”
In a fact sheet promoting the new public charge rule, the White House cited a 2017 poll from America First Policies (a pro-Trump organization) saying that 73% of Americans favor requiring immigrants coming to the country to be self-sufficient.
Critics of the new public charge rule, however, say older, poorer immigrants will be harmed by it. In an amicus brief filed by Justice in Aging and others to contest the new rule, one of the arguments points to the situation of five million older immigrants who "are likely to have supported their families, have contributed to our nation's economy by, for example, paying taxes and contributing to Social Security, and have been integrated into the fabric of our country. Yet, under the Final Rule, they will be viewed as having failed to contribute to society."
What Older Immigrants Say About the Public Charge Rule
“That’s not fair!” exclaimed Losa Petela, a 60-year-old legal immigrant from the South Pacific archipelago of Tonga who lives in Fremont, Calif. and has worked as a home caregiver in the Bay Area for nearly 10 years. Citing her own example, Petela said that immigrants who’ve served their U.S. community well, even if they are older, should be allowed to get their green cards.
“Those whose children are contributing to the [United States] for so many years and who don’t have anyone left in India should be allowed to join their families.”
Praveen Thakur, 79, a U.S. citizen who came here over 50 years ago from India and lives in Santa Clara, Calif., takes a slightly different view. “If the children take full responsibility [for their parents], then older parents should be allowed to come and get a green card so that they can stay with their families,” he said.
Dave makes another distinction: “Those whose children are contributing to the [United States] for so many years and who don’t have anyone left in India should be allowed to join their families,” she said.
Spreading Fears About the New Changes
Fears about the implications of the new public charge rule are spreading.
“We know that health care providers and social service agencies across the country are already starting to get calls from concerned individuals asking whether or not it is safe to remain enrolled in health, housing and nutrition programs,” said Madison Allen, senior policy attorney from the Center for Law and Social Policy, a nonpartisan nonprofit working on policy solutions for low-income people.
This chilling effect caused by confusion as to who, or what, will be subject to the public charge test has resulted in some legal immigrants disenrolling from public programs even before the February 24, 2020 official start date.
The New York City Department of Social Services has said that in 2018, roughly 11% of the city’s non-citizen immigrants “who are eligible for and lawfully receiving SNAP benefits have either left the SNAP caseload or have decided not to enroll, at a higher rate than U.S. citizens in the program. The agency cited a correlation between this decline in enrollment and the public charge proposals, due to a “fear of potential immigration consequences.”
Democrats' Bill to Curb the Trump Administration's Plans
Congresswoman Judy Chu, a Democrat representing communities near Los Angeles, said at a Jan. 31, 2020 press briefing: “By keeping families apart, Trump is making it harder on immigrants to succeed.” Last year, Chu introduced the No Public Funds for Public Charge Act, which would prevent federal funds from being used to implement the new public charge rule. The bill has 118 Democrat co-sponsors from 34 states and no Republicans.
“We are in a wait and see period right now,” said Denny Chan, a senior staff attorney at Justice in Aging. Arguing that the new public charge rule unlawfully targets older immigrants and their families, five briefs have been filed in circuit courts by organizations advocating for the elderly.
“It’s going to be a lengthy process,” Chan said. Although the rule will take effect on February 24, a circuit court could grant an injunction blocking it.
Older immigrants who are worried about the public charge rule, Chan said, should “speak to an immigration attorney to get individualized legal assistance before they make any decision to access, or apply for, benefits.”


Why the New 'Public Charge' Rule Could Hit Older Immigrants Hard

It’s American culture to value productivity above most else. Filling schedules to the brim and working long, late hours elicits praise and respect, while carving out time just for fun or self-care isn’t viewed with as much admiration. It’s a career-over-everything mentality, and when we tie so much of our self-worth to our jobs, we tend to structure any free time around not what brings us joy, but what we could do to increase productivity even more. If this sounds familiar, you might have never pursued a hobby — whether for lack of time or not seeing its purpose. Too bad. It's great to have a hobby.
Writer Jaya Saxena recently forgot the word “hobby.” While telling friends about her spouse’s new venture playing in a band, she used a roundabout way of describing a hobby, but forgot that a word already existed to describe it. Hobbies, sadly, have become more of a rare phenomenon.
For Many, Hobbies Are a Thing of the Past
“For many of us, expectations of an ‘always-on’ working life have made hobbies a thing of the past, relegated to mere memories of what we used to do in our free time,” Saxena wrote for The New York Times. “Worse still, many hobbies have morphed into the dreaded side hustle or as paths to career development, turning the things we ostensibly do for fun into … more work.”
It’s true. Admittedly, Next Avenue has run plenty of advice on turning hobbies into sources of income. It’s a popular way of bringing pleasure to work, and in theory it makes perfect sense to monetize your skills. There’s nothing inherently wrong with merging work and hobbies, but what do we lose when we see our hobbies through a work lens? The beauty of a hobby is its low-stress, low-pressure, low-stakes nature. Maybe some hobbies should stay sacred — for enjoyment only.
“Hobbies can also remind you that work isn’t everything,” Saxena wrote.
Have a Hobby for Leisure, Not Work
Saxena highlighted a 2009 study that found a focus on leisure activities “correlated with lower blood pressure, lower levels of depression and stress, and overall better psychological and physical functioning.” Hobbies are a way to recover from stress, too, and give you the opportunity not only to regroup but to bring your best self back to work.
If you’re hung up on taking too much time away from work and productivity, know that studies have also shown that time spent on hobbies can improve job performance through improved creative problem solving and helping others on the job.
Hobby Inspiration
Feeling stumped about what you’d like to adopt as a hobby? Just think about times you’ve thought or said, “I’ve always wanted to try that.”
Maybe it’s taking up photography, baking or camping. Looking back to your childhood interests and passions is another great place to start, as Next Avenue has encouraged in the past.
“If the inevitable ‘What do I do with the rest of my life?’ question has you perplexed, you may benefit from revisiting who you were as a child and what you loved to do,” Saxena wrote. “In those dusty storage boxes filled with your childhood keepsakes — report cards, photos, artwork, news clippings, coloring books, prize ribbons, toys and other artifacts — you may find clues for your tomorrow.”
Next Avenue also has published guides and examples of people exploring birdwatching, attending the opera, writing workshops, quilting, storytelling, tango and gardening.
One key final note about having a hobby: Perfection is not the goal. Hobbies are about trying new things and learning what you like (and don’t like) — not just being the best.


Why It's Great to Have a Hobby

Grace Birnstengel

For her 65th birthday in December 2016, Linda Greenblatt of Las Vegas got an unusual present. Her step-daughter, 36-year-old Sheryl Greenblatt, bought her a $200 medical marijuana card.
“I had been on her about living a healthier lifestyle and telling her she didn’t need all the dangerous medications she was on,” Sheryl Greenblatt said. “So, for her birthday I got her the medical marijuana card.”
The card itself is free. The visit to the doctor who prescribed Linda Greenblatt’s medical marijuana card was $200.
“I knew nothing about cannabis,” says Linda Greenblatt of the plant from which marijuana is derived. But, she’d heard the buzz. “It’s kind of hard to ignore all the positive research,” she explains.
A Burgeoning Trend
Medical marijuana is currently legal in 29 states, the District of Columbia, Guam and Puerto Rico. In 1996, California was the first state to allow for use of cannabis medically. Each state has its own rules and conditions for which cannabis can legally be prescribed. However, on the federal level, the Food and Drug Administration (FDA) has not approved the marijuana plant as medicine.
Linda Greenblatt, who has been plagued with a lifetime of medical issues, began speaking about cannabis with her step-daughter and Sheryl’s father (her husband) years ago, long before Nevada began legally dispensing medical marijuana in July 2015. “The fact is, I am on a lot of very dangerous medications because there are so many things wrong with me,” she says.
“Turning to cannabis was a matter of getting disgusted that all the medicines she was on were breaking her body,” says Sheryl Greenblatt. “So I supported Linda when she and my father came to me to discuss cannabis.”
Confronting Bias Against the Treatment
According to clinical psychologist Nimali Jayasinghe, who is in private practice in New York City specializing in care of older adults, “A conversation about medical marijuana use is complicated only if we allow emotions and misconceptions to dominate.”
Dana Rosenbaum’s mother has cancer that has metastasized into her bones, but the older woman dismissed the idea of cannabis for a long time.
“I thought it was a good idea because I had heard so many good things about it,” says Rosenbaum, 38, of New York City, of her mother’s eventual decision to try an initial low dosage. “I thought if anything, it would relax her.”
Dr. Tom O’Brien tries to quell some of the fear.
“I tell my patients, ‘This is not Fast Times at Ridgemont High and your parent is not Spicoli,’” says O’Brien, a prescriber of medical marijuana in New York City. (He is referring to the 1982 comedy film in which Sean Penn plays a stoned high school student named Jeff Spicoli.) 
O’Brien adds that there needs to be more education about cannabis to remove the negative stigma associated with what he calls the M word. “My job is to help my patients get comfortable and be functional.”
A Noticeable Shift
Dr. Craig Blinderman, director of Adult Palliative Care Service and associate professor at Columbia University Medical Center, says he’s seen a change in the conversation over the past year and a half since New York State legalized medical marijuana — as if a taboo has been lifted. 
“In my experience there has been an advocacy rather than a skepticism in the conversations about cannabis I have had with my patients and their adult children,” he says.
“For a conversation to be open and productive, there needs to be an awareness that both fearfulness and over-enthusiasm can get in the way,” says Jayasinghe. She suggests that adult children should be asking their parents the same questions about cannabis that they are asking about their parents’ other medicines, including, what problem do you hope it will help? And, what do you know at this point about its potential benefits or potential unwanted side effects?”
How to Do It
If you do plan to help your parent seek out a legal prescription for cannabis, it’s not as simple as just going to the doctor. Here are some basic steps to follow:
1) Check on your state’s laws. Find out if your parent is eligible to use cannabis in his/her state for his/her medical condition. The National Conference of State Legislatures has links to each state’s government website where medical marijuana laws are listed.
2) Find a physician. Not all doctors who can legally prescribe list their names publicly on state registries. You may also try this list. Or, ask your doctor or your parent's doctor for a recommendation. Blinderman says most of his patients come to him through word of mouth.
3) Book a medical appointment. Have your parent get a full physical workup to determine if his/her condition: a) meets the criteria for legal use in the state in which he or she lives; b) can benefit from cannabis use. Then have a conversation with the physician. Ask about which formulation is best for your parent’s condition: vapor, oral tablet, liquid oil (for under the tongue), edibles, etc. Not all states allow all formulations.
4) Wait for your cannabis card. Once the doctor has written a prescription for a medical marijuana card, it will arrive from the state through snail mail. It can take as long as two weeks.
5) Find a dispensary. With his/her medical card and a separate ID, your parent will need to pick up the prescribed cannabis from an approved dispensary. Caregivers can register with their state’s Department of Health to get a caregiver card to pick up the cannabis for the patient.
6) Make an appointment to pick up the prescription, then prepare for the cost. At this time, neither private health insurers nor Medicare nor Medicaid cover the cost of medical marijuana.
Price Concerns May Get in the Way
The cost has limited Greenblatt’s use.
“If I could afford to take more, then I would,” says Greenblatt, who admits that at $120/month she is selling off family valuables to pay for the medicine.
“I would rather have her live with credit card debt then live without quality of life,” says Sheryl Greenblatt, pointing out that for Linda after only six months the cannabis is already effecting positive change. “She hasn’t been sick since she’s been on it and she has pain relief.”
The choice to go off cannabis because of the cost or to go into debt in the name of pain relief could soon be a thing of the past. There have been recent court rulings in both the United States and Canada that could change how insurance companies view cannabis.
In fact, as part of an historic ruling in New Jersey, earlier this year a judge took into account the dangers and addictive qualities of opiates (for which insurance companies pay) as compared to the safety concerns over marijuana. She ordered the plaintiff’s insurance company to pay for an injured worker’s medical marijuana.
“You cannot overdose and die from cannabis as you could from oxycodone,” says Blinderman of the opioid, which is man-made. “There is no dose of cannabis you could take to make your heart stop beating. It’s not synthetic, it’s safer and addiction is less likely to be a side effect.”


Should You Talk with Your Aging Parent About Medical Marijuana?

Cari Shane

The advent of major economic change is sometimes obvious, like the 1973 OPEC oil shock. More often, change accumulates with little fanfare until it’s recognized that something big has happened. The legendary financier Leon Levy called these incremental upheavals that lead to major change “taps on the shoulder.”
Recent taps suggest that the decade-long policy stagnation over financing long-term care in America is coming to an end. But it isn’t happening in Washington. Look to the states. That’s where action is beginning to help family caregivers and their loved ones pay for the often-exorbitant costs of home care, nursing homes and assisted living facilities.
“A lot of us in the field have felt like Don Quixote tilting at windmills,” says Marc Cohen, professor of gerontology at the University of Massachusetts Boston and co-director of the LeadingAge LTSS Center@UMass Boston. “All of a sudden, things started happening.”
It’s overdue, according to the American public.
Support for Government Help With Long-Term Care Costs
A 2018 survey by the Associated Press-NORC Center for Public Affairs Research showed support for a government-administered long-term care insurance program similar to Medicare soared from 51% in 2013 to 70% last year.
The aging of boomers is a strong reason why political action to address long-term care is on the rise. Resources required to provide even the current level of inadequate long-term care services are projected to triple by 2030, partly because of the rapid growth in the 85 and older population.
Medicare covers few long-term care costs (although private Medicare Advantage plans are starting to offer some services). The federal/state Medicaid program, the nation’s public long-term care option, requires impoverishment to qualify. And the private long-term care insurance market has shrunk dramatically. Meantime, home health care workers are leaving the field for higher paying and less demanding jobs.
What's Happening in the States
Among the friendly long-term care shoulder taps being felt across the nation:
Washington State legislators passed the first universal public long-term care insurance benefit on April 26. It will be the most comprehensive long-term care program in the nation. ices and support, ranging from personal care aides to wheelchair ramps. Washington Governor and Democratic presidential candidate Jay Inslee has said he’ll sign the legislation into law.California, Michigan, Illinois and Minnesota are considering public and private options to help families better meet caregiving expenses.Hawaii in 2017 passed a cash benefit long-term care program that pays family caregivers $70 a day for 365 days. And although this Kupuna Caregivers Program had been under threat of budget cuts, it recently got a funding bump and is now expected to reach more people.Long-Term Care Rumblings in Washington, D.C.
There’s also been some rumbling in the Capitol.
Rep. Frank Pallone, Jr. (D-N.J.) has proposed the Medicare Long-Term Care Services and Supports Act. It would establish a public long-term care benefit within Medicare with a daily cash benefit of about $100 after a two-year waiting period.
The House Medicare For All bill introduced by Rep. Pramila Jayapal (D-Wash.) and Rep. Debbie Dingell (D-Mich.) includes paying for home-based, community-based and nursing home care.
And presidential candidate Sen. Bernie Sanders (I-Vt.) has expanded his Medicare for All blueprint to include long-term care support and services.
What Isn't Happening for Long-Term Care Costs
To be sure, not everything is positive on the long-term care financing front.
Last year, Maine voters rejected a referendum calling for a long-term care public benefit funded through a surtax on high-income households. Even though Maine has a greater share of older residents than any other state, almost 63% of the vote said: No thanks.
And the Trump administration shows no interest in expanding the social safety net to further assist with long-term care costs. The bitter political divide in Washington, D.C. means it’s a safe bet little progress will be made with any federal long-term care proposals until after the 2020 election (at the earliest).
What the Future Holds
But long-term care experts are optimistic that action on the state level will pick up, especially following the Washington State vote.
At the American Society on Aging’s 2019 Aging in America Conference in New Orleans last month, Lynn Friss Feinberg, senior strategic policy adviser for the AARP Public Policy Institute, reflected on the significance of Washington state’s initiative. “Once one state does it, other states will follow,” she said.
State experiments may ultimately nudge Congress toward embracing practical federal solutions.
“I do believe that getting political action on the state level gives a tremendous boost on the national level,” says Judith Feder, professor of public policy at Georgetown University and a member of the 2013 Commission on Long-Term Care. “Members of Congress like to see something real.”
States to Watch: Washington, Michigan, Minnesota, California
Here’s how the Washington State Long-Term Care Trust Act will work: Starting in 2025, it will provide up to $36,500 (indexed for inflation) to pay for a broad range of services. Employees will pay a monthly payroll tax of 58 cents for every $100 earned (that’s about $18 a month for the average per capita income in the state, according to The Intercept.) The benefit will be available to anyone who pays into the program for three out of the last six years or pays the tax for at least 10 years. Residents will be eligible once they need help with three of six basic activities of daily living, such as feeding, bathing, and dressing and grooming.
Other states are stirring.
Michigan is conducting a needs assessment and an actuarial analysis on long-term care. Minnesota has been working on two private financing options targeted at middle-income families.
But the state to watch closely is California.
The California Aging and Disability Alliance is gathering information that could lead to a ballot initiative for a public long-term care financing program. California’s new Governor Gavin Newsom called for action in his 2019 State of the State address.
“It’s time for a new Master Plan on Aging,” he said. “It must address: person-centered care, the patchwork of public services, social isolation, bed-locked seniors in need of transportation, the nursing shortage, and demand for In-Home Supportive Services that far outpaces its capacity.”
Hopefully, promises like this will get translated into legislation fast. Family caregivers and their elders in California and elsewhere deserve nothing less.


For Help With Long-Term Care Costs, Look to the States

Chris Farrell

Additional Influencers of 2015:
Sudipto Banerjee:  Research associate at the Employee Benefit Research Institute (EBRI)Barbara Beskind: Design at IDEODan Buettner: Author of Blue Zones: Lessons for Living Longer From the People Who've Lived the LongestDonna Butts: Executive Director of Generations UnitedGlen Campbell: Music legend and contributor to Alzheimer's educationPeter Cappelli - Director of the University of Pennsylvania’s Wharton Center for Human Resources and a management professor at The Wharton SchoolLaura L. Carstensen: Professor, author and founder of the Stanford Center for LongevityRoz Chast: New Yorker cartoonist and authorSen. Susan Collins: Maine SenatorBarbara Coombs Lee: President of the nonprofit Compassion & ChoicesJoseph F. Coughlin: Director of the MIT AgeLabTobey Dichter: Founder and unpaid chief executive officer of the nonprofit Generations on the LineNora Dowd Eisenhower: Assistant director for the Consumer Financial Protection Bureau’s Office of Older AmericansVickie Elisa: President of Mothers’ Voices GeorgiaDr. Ezekiel J. Emanuel: Oncologist, author and medical ethicist.Katy Fike: Co-founder of Aging 2.0.James Firman: President and chief executive officer of the National Council on Aging (NCOA)Karen I. Fredriksen-Goldsen: Professor of Social Work, University of Washington; director of the Institute for Multigenerational HealthMarc Freedman: Founder and chief executive officer of Engore.orgDr. Linda P. Fried: Dean of the Mailman School of Public Health at Columbia UniversityLisa Genova: Author of Still Alice and Inside the O'BriensKathy Greenlee: Assistant secretary for aging at the U.S. Department of Health and Human Services and administrator of the Administration for Community Living (ACL)Jennie Chin Hansen: Former American Geriatrics Society (AGS) Chief Executive OfficerRodney Harrell: Director of livable communities, AARPCarrie Hessler-Radelet: Director of the U.S. Peace CorpsCindy Hounsell: The founder and president of the nonprofit group WISER (Women’s Institute for a Secure RetirementCynthia Hutchins: Director of Financial Gerontology for Bank of America Merrill LynchJ. Mark Iwry: Senior adviser to the Secretary of the Treasury and deputy assistant secretary (tax policy) for retirement and health policy at the U.S. Treasury DepartmentIna Jaffe: Veteran political and arts reporterCynthia Kenyon: Vice President of aging research at CalicoLaurence J. Kotlikoff: Economics professor at Boston University and co-author of the bestseller, Get What’s Yours: The Secrets to Maxing Out Your Social SecurityDr. Joanne Lynn: Director of the Center on Elder Care and Advanced Illness, Altarum InstituteKevin J. Mahoney: Gerontologist and director of the National Resource Center for Participant-Directed Services at Boston CollegeDr. Bruce Miller: Director of the Memory and Aging Center at the University of California, San FranciscoLarry Minnix: President and CEO of LeadingAgeDr. Laura Mosqueda: Co-director of the National Center on Elder AbuseAlicia H. Munnell: Director of the Center of Retirement Research at Boston CollegeBernard Osher: Philanthropist and visionaryDr. Philip Pizzo: Creator and founding director of The Stanford Distinguished Careers InstituteAi-jen Poo: Author of The Age of Dignity: Preparing for the Elder Boom in a Changing America and labor activistLauren Stiller Rikleen: President of the Rikleen Institute for Strategic Leadership and a visiting scholar at the Boston College Center for Work & FamilyOfer Sharone: Assistant professor at the University of Massachusetts – AmherstMaria Shriver: Former network news correspondent and anchor for CBS and NBC, and former First Lady of CaliforniaFelipe Sierra: Director of the Division of Aging Biology at the National Institute on AgingKen Smith: Senior research scholar and director of the Mobility Division at the Stanford Center on LongevityLester Strong: Chief executive officer of AARP Experience Corps and an AARP vice presidentNora Super: Leader of 2015 White House Conference on AgingDr. Bill Thomas: Founder of The Green House ProjectBarbara Vacarr: Director of the Encore Higher Education Initiative at Encore.org

2015 Influencers in Aging

It was beginning to rain as I stepped into the lobby of the Westbeth Artist apartments in Greenwich Village where three students were helping photographer Arlene Gottfried organize 40 years of photographs. There were four closets full of photographs in boxes, plus additional storage cabinets.
Gottfried’s work had been stored haphazardly — edgy photographs of the 1970s and '80s New York City club scene were mixed in with photographs she had shot for a Life magazine story on welfare hotels. Her photos have appeared in all sorts of places: her own books, including Sometimes Overwhelming and Mommie; in the pages of The New York Times Magazine and many other publications and in exhibits in Tokyo, Paris and Washington, D.C. The prospect of cataloging it all was daunting, to say the least. 
“I open the door and close it again,” Gottfried says of her solo attempts at this task. But now she's getting help from Art Cart, an organization that pairs working artists over 62 with students earning degrees in museum/arts administration or occupational therapy to help them catalog their work. Founded by Joan Jeffri, Art Cart chooses 10 visual artists a year; those lucky ones get some much-valued help from some equally lucky students. 
In Gottfried's case, the students decided to organize first and then make lists of the contents. The data would be entered into EmbARK (the professional archiving program Art Cart employs). Then they would make lists for each box so Gottfried would know at a glance what was in them.
"It’s great to have them help me," says Gottfried, who, in addition to making photographs, sings in a choir and as a soloist. Having things organized will allow her to focus on the music, light and people that have always inspired her. “It helps to continue making your art, and to not consider yourself as just an aging person unable to continue with your creative desires,” she says. 
A photo from Arlene Gottfried's "Don't Just Wander" series 
A photo from Arlene Gottfried's book "Look Inside Mommie"
A photo from Arlene Gottfried's book "Look Inside the Eternal Light" 
A photo from Arlene Gottfried's book "Look Inside Midnight"
Photos from Arlene Gottfried's book "Look Inside Midnight"
Photos from Arlene Gottfried's book "Look Inside Midnight" (left) and "Look Inside Sometimes Overwhelming" 
Intergenerational Learning
While the artists get a giant helping hand from the students, it’s not a one-way street.
Eileen Hendriksen, a 32-year-old master's of social work candidate at Hunter College, is working with artist Morton Kaish. She was attracted to the program because she was very close to her grandparents.
“Art Cart is not just about documenting the artist’s work,”Hendriksen explains. “We go through the studio and make sure there are no health or tripping hazards, that the artist can open the window.” This scrutiny could lead to some awkward moments. On one initial site visit, she recalled thinking “Hi! I know we’ve just met, but let me look around your place.”
Adds Hendriksen: “This experience has been a very important example of positive aging since, as a social work student, I am so often learning about the challenges that older adults may face. Spending time with Morton has been a great reminder that older adults are not all ill or frail.”
Along the way, Hendriksen also has learned a lot about the process of making art.
“I've learned the difference between types of prints and the techniques and tools used to make them,” she explained. She’s also learned a lot about Kaish's process in creating a painting: his approach to evaluating different elements he may want to add or remove, the use of technology to aid in his process, and — that all-important decision — how he knows when a piece is finished.
While going through past works to document them, they encountered techniques Kaish hadn't used in years but was inspired to return to again for the creation of new works.
Welcome to Zigiland
Yangxingyue "Rita" Wang, who studied fine arts in her native China and is now earning her master’s degree in visual arts at New York University, also likes the cross-generational learning that Art Cart provides. She's found she has more things in common with painter and sculptor Zigi Ben-Haim, who just turned 70, than she expected.
Ben-Haim works in his spacious loft behind the anonymous door on a side street in the middle of Soho. There is more than one photograph of Albert Einstein in his studio, and — with his wild eyebrows and mustache — the artist somewhat resembles the great physicist, who counsels from a poster on the wall that “Imagination is more important than knowledge. For while knowledge defines all we currently know and understand, imagination points to all we might yet discover and create.”
In fact, Ben-Haim has created his own world, quite literally: a globe of a world entitled “Zigiland.” And he still works like a madman to keep up with his creativity.  “I'm in the studio every day by 8 a.m.," he says, "and sometimes around midnight I complain that I have to stop working like I used to.”
Sitting at a table that might easily accommodate eight, Ben-Haim reminisces about his travels. He was born in Baghdad and grew up in Tel Aviv before coming to the United States to study fine arts in San Francisco. He recalls standing in line for 25 minutes to get a very small loaf of bread in the Soviet Union. (He gave the bread to someone waiting behind him.) He also worked in Berlin, the only time in his life when he had a steady paycheck, because the government was giving him a stipend.
On a tour of his studio, Ben-Haim stops before photograph of a tree and bench he had sculpted for Shimon Perez. The former Israeli Prime Minister had written a poem that was engraved on the seat. 
Ben-Haim says he appreciates how everyone involved benefits from Art Cart: “The artist has his work organized; the institution has a database of the art and the students get a great experience working with an artist."
When Wang created a stunning website to summarize her own work, she realized “I’m doing the same thing as Zigi, documenting what I have done in the past.” Not only that, “Working with Zigi has affected me positively,” she said. “Even at 70 he’s still creating. It’s a very big inspiration to me.”


How Do You Organize 40 Years of Artwork?

Deborah Quilter

(This article previously appeared on Gobankingrates.com.)
Losing a spouse is one of the most devastating events one can face. Yet at a time when you feel unable to carry on with life’s tasks, you’re hit with financial burdens that require your immediate attention.
Coping with overwhelming emotions while you handle the financial side of death is no easy task.
Here’s a general guide for what you’ll need to do after the loss of a spouse:
Gather Important Documents
You will need numerous documents in order to get death benefits, handle your late spouse’s assets and debts and manage finances on your own, including the following:
A death certificate  You can get this document from the funeral director, medical examiner or county health department. Get 15 to 20 certified copies because you’ll need them to claim benefits and access accounts.Your spouse’s will  Make sure you have the actual will and its most recent version, not a copy.Your marriage licenseYour spouse’s last Social Security statementYour spouse’s insurance policiesYour spouse’s certificate of discharge from the military (if there was one)Your spouse’s last veteran’s benefit statement (if spouse was a veteran)Your spouse’s bank, brokerage and retirement account statementsFigure Out How to Pay for a Funeral
“Your first financial hurdle is the funeral,” said Jerry Love, a Certified Public Accountant (CPA) in Abilene, Texas, and a member of the American Institute of CPAs’ National Financial Literacy Commission. You’ll have to pay for it out of pocket unless your spouse paid for a funeral in advance with a pre-need plan.
The average cost of a funeral is more than $7,000, according to the National Funeral Directors Association. That doesn’t include cemetery and monument or marker costs and items such as flowers.
If your spouse had a life insurance policy, the payout could help cover the cost of a funeral. Typically, you’ll need to show the funeral director your policy or provide contact information for the insurance company. Usually, the funeral home will work directly with the insurer to be paid through the life insurance proceeds, Love said.
Gain Access to Bank Accounts
If you and your spouse had joint bank accounts or your spouse had payable-on-death (POD) accounts that designate you as the beneficiary, you shouldn’t have trouble gaining access to them.
If you had separate accounts without a POD designation, you will likely need to go through probate to settle the estate, Love said. If your spouse did not have a will that named you the executor of his or her estate, you’ll have to ask the court to appoint you as the administrator.
Love said you’ll need to receive letters issued by the court stating that you are the executor of your spouse’s estate and have the right to act on its behalf. You’ll then need to provide them to your financial institution to gain access to your spouse’s accounts.
Identify Assets
In the best-case scenario, your spouse created a list of all of his or her financial accounts, insurance policies and other assets. If not, you’ll have to track them down on your own. “You’re really in an Easter egg hunt at this point,” Love said.
If you know your spouse had a life insurance policy, contact the insurer and be prepared to provide a copy of the death certificate. Typically, the benefit is paid within two weeks of a death claim, said Nina Benton, a Certified Financial Planner with Prudential.
If you’re not sure your spouse had a life insurance policy or any other insurance policies that might pay death benefits, look over his or her bank statements for any recurring payments to insurance companies.
Also, check with your spouse’s employer to see if he or she had any policies through work, including a group disability policy that might pay benefits for accidental death, said Armando G. Roman, a CPA and wealth manager with AXIOM Financial Advisory Group in Scottsdale, Ariz.
Roman also recommended checking your spouse’s credit report (you can get it free through AnnualCreditReport.com) to identify accounts.
Look at your tax return to identify assets such as interest-bearing accounts or dividend-paying stocks.
Any assets your spouse had, aside from insurance benefits paid directly to beneficiaries or POD accounts, will go through the probate process and be distributed by the court. Nothing will be distributed until all estate bills and debts are settled. However, the court will usually allow you to set up an estate account to pay ongoing expenses, Benton said.
Cancel Payments From Your Spouse’s Accounts
When you’re reviewing your spouse’s bank or credit card statements, also look for recurring payments for services that might need to be canceled, such as your spouse’s auto insurance policy or prescriptions that are automatically refilled each month, Benton said. Notify your spouse’s health insurer or Medicare of his or her death to stop premium payments.
Before you cancel any joint credit card accounts, though, make sure you open your own account first if you don’t already have one, she said. Otherwise, if you report your spouse’s death to the card issuer, the account might be closed. Then you’ll be left without access to credit.
Create an Income Stream
If you relied on your spouse’s income for support, you’ll need to look for ways to replace that income. Here are several common sources and how to access them:
Social Security Survivor benefits Notify the Social Security Administration as soon as possible after your spouse dies by contacting your local office or by calling 800-772-1213. If your spouse was receiving Social Security benefits, you must return the benefit check he or she got during the month of death or ask the bank to return any direct deposits to Social Security.
As the surviving spouse, you’ll receive a one-time death benefit of $255. If you’re 60 or older (50 if you’re disabled) or caring for a child younger than 16, you might be eligible to receive monthly survivor benefits if your spouse worked long enough to collect benefits.
Survivor benefits are worth 100 percent of what your spouse was collecting or was entitled to collect at the time of death if you are at Full Retirement Age when you claim benefits, said Mary Beth Franklin, a Social Security expert and contributing editor at InvestmentNews. The maximum monthly benefit in 2015 for someone at Full Retirement Age is $2,633. Your benefits will be reduced as much as 28.5 percent if you claim them before your full retirement age.
You won’t need to apply for survivor’s benefits if you’re already receiving Social Security spousal benefits. Social Security will automatically adjust your monthly benefits. However, if you get retirement or disability benefits based on your own record, and not your spouse’s, or aren’t receiving any Social Security benefits, you will need to apply for survivor benefits. Here are the documents you might need to provide when you apply.
Military benefits If your spouse was an active member of the military, you’re entitled to certain benefits, including burial benefits and Survivor Benefit Plan payments that are equal to 55 percent of what your spouse’s retirement pay would have been if he or she retired at 100 percent disability.
You might receive a one-time tax-free $100,000 death gratuity payment if your spouse was on active duty or was a Reserve of the Armed Forces at the time of death.
And you can apply to receive a Dependency and Indemnity Compensation benefit if your spouse was a military service member who died in the line of duty or whose death resulted from a service-related injury or disease. For more information, see the Defense Department’s A Survivor's Guide to Benefits.
If your spouse was a retired military member, you’ll need to contact the government’s Defense Finance and Accounting Service as soon as possible to establish a Survivor Benefit Plan annuity and to avoid any overpayment of your spouse’s retirement pay. That service will provide instructions on how to report a military retiree’s death.
Pension payments If your spouse was receiving pension payments through a former employer, you’ll need to notify that employer of your spouse’s death and find out what forms you’ll need to fill out to receive those benefits if you’re a beneficiary, Love said. The process varies from employer to employer.
Retirement accounts If your spouse had a retirement account such as a 401(k) or IRA, he or she likely named a beneficiary for the account. If so, the money in the account will go to the designated beneficiary, regardless of what your spouse’s will states, Love said.
You’ll need to contact the account administrator to start the process of transferring the funds. If your spouse had a workplace retirement account, the company’s human resources department should be able to put you in touch with the account administrator. If your spouse had an individual account, you’ll need to track down account statements to find a contact.
Get Professional Help
You’ll likely need help from others to get through this process. If you or your spouse had been working with a professional such as an accountant, financial planner or attorney, turn to that person first for help, Love said, because he or she will be familiar with your financial or legal affairs.
If you need help finding a professional in your area, you can use the Find a CPA tool on the American Institute of CPAs site or find a fee-only financial planner through the National Association of Personal Financial Advisors.
For advisers who do pro bono work, check with your state financial planning association or with grief counselors who might know professionals in your area, Benton said.


How to Handle Finances When a Spouse Dies

Cameron Huddleston

“It will be a good story someday,” became a catchphrase of actress Kimberly Williams-Paisley’s mother throughout their lives whenever something went wrong.
But on the actress' real-life wedding day to country music star Brad Paisley — a role for which she had a big screen dress rehearsal years before, starring alongside Steve Martin in the Father of the Bride movies — she realized something was wrong. And it wasn’t going to be a good story. At least not at first.
It was 2003 and her mom’s crying episode over not having a role in the wedding was followed by a last-minute inclusion of her to do a reading.
But Linda Williams mispronounced Colossians (it came out “Colithians”) and then experienced a very long forgetful pause. Something was not right. It was uncharacteristic of Williams-Paisley’s sharp mother to have a brain lapse. She had been a freelance foreign news correspondent in London and was currently working as a major donor fundraiser with The Michael J. Fox Foundation for Parkinson’s Research. She was only 60 at the time.
Sign of Things to Come
But as I talked to Williams-Paisley about her new book, Where the Light Gets In: Losing My Mother Only to Find Her Again, she explained that her wedding day was the red flag, the first glimpse of what was coming.
Williams-Paisley’s mother was diagnosed two years later at age 62 with a rare neurological syndrome called primary progressive aphasia (PPA). Speech and language are affected, while other brain functions remain unchanged. The degenerative disease progresses, with individuals unable to write or read or comprehend what they hear until finally they are no longer able to speak or effectively communicate. PPA can eventually lead to a more comprehensive degenerative brain disease such as Alzheimer’s or another type of dementia. About half of those with PPA have a parent or sibling with the condition, pointing to a genetic connection, according to researchers.
I told Williams-Paisley that reading the book (I devoured its 246 pages in two hours) was like having coffee with a girlfriend — the tone is so conversational and intimate. Some parts are humorous (courtesy of her country crooner husband Brad, who kept his wife’s spirits up and became her rock), while others are heartwrenching (her struggle with understanding life with "old Mom" versus "new Mom"). During our conversation, Williams-Paisley told me that as a new mother to her firstborn son, Huck, she sobbed thinking her son would never know his grandma as the person she had known.
A Long-Distance Caregiver
Her story takes the reader on a heartfelt family’s journey with dementia and how it affects not just the person with the disease but the entire family. Since Williams-Paisley was beginning her new life in Nashville with her husband, she became a long-distance member of the care team around her New York-based mother, with the primary caregiver being Williams-Paisley’s dad, Gurney.
“I experienced the guilt of living far away and I felt so helpless,” Williams-Paisley told me, lamenting that her dad and sister Ashley were on the front lines of caregiving. But, she adds, “Eventually I gave myself permission to let it go and focused on the things I could do.”
Williams-Paisley was definitely not taking the caregiving journey alone. In fact, this is an inspirational book about how a family can create a care team where everyone’s role is important. Instead of hurt feelings, frustration or anger among siblings over who was doing more, this was a family who came together through caregiving. It was an ensemble cast and everyone had a key role.
Williams-Paisley’s role became researcher. She scoured articles, clinical trials and other information about how to keep her mother safe at home and help her dad. She also became her dad’s cheerleader and supporter and called him daily to check in. As care costs escalated, she and husband Brad also helped out financially. Her brother Jay became a paramedic, so the medical information and explanations became his job. Her sister Ashley was there in New York as hands-on secondary caregiver supporting their father.
And ultimately, Williams-Paisley became the family chronicler. Although she wrote the book, it is actually the story of how each of her siblings and her dad were coping. The Williams family wish was to help other families, since theirs was so unprepared for such a devastating blow.
The Shame of Dementia
She does describe a concern that her parents initially wanted the diagnosis to stay within the safe walls of the immediate family. When Ashley reached out to a renowned dementia specialist on whether he might be able to help, her parents were furious that someone “outside the family” had been told.
The stigma of a brain disease or disorder is not uncommon for families of dementia. According to an Alzheimer’s Disease International report, 25 percent hide their diagnosis and 40 percent withdraw from everyday activities; two-thirds of dementia caregivers feel others perceive those with dementia in a negative way. But denial can block families from finding support and good information on how to manage the disease and care duties.
Williams-Paisley also told me her “aha” moment came when her parents arrived in Nashville for a visit and her dad asked her to take her mom to the ladies room. As she helped her mom into the stall, she saw her mother’s incontinence had become a huge issue — her pants were soaked. Williams-Paisley looked in the bag her dad had casually handed her and it contained an extra set of adult diapers and pants. It finally hit her what was happening in her dad’s life.
“I did not realize the drain that caregiving was taking on my dad,” explains Williams-Paisley. “It dawned on me he never said a word because he didn’t want me to worry and he was still protecting mom’s dignity.” It broke her heart to think her mom needed the same help with bathroom activities from her dad as her two young sons needed from her.
Not All Was Darkness
But Williams-Paisley did find the silver linings in her mom’s progressively difficult life.
“I watch with joy as my oldest son Huck (now age nine) has become a beacon of light for my mom,” she told me. “He is uninhibited with her and somehow even at his young age he is intuitive about what is going on with his Nana. Their relationship and the way they laugh together is a gift for me.”
The worst day for Williams-Paisley was when her dad and sister had to finally take her mom to live in a long-term care facility. Her father could no longer care for his wife at home — her mother had bitten him when he gave her medications. Williams-Paisley said she felt so empty as her sister described having to almost run out of the long-term care facility as the door locked behind them and they were told by staffers to not look back. Her mom had been told this was the plan, but Williams-Paisley later learned she still felt abandoned.
The silver lining came three weeks later when Williams-Paisley visited her mom in her new “home.” At the end of the visit, she asked her mother if she liked it and her mom responded, without hesitation, “I love it.”
Williams-Paisley says she knows most aging parents don’t want to move into long-term care, and in her family they had promised her mom that would never happen. However, she told me, “It became the best thing for everyone — my mom, my dad, my sister. I know she’s safe and Dad can get his life back because he was not going to be able to continue much longer.”
Talk About Your Wishes
She also told me she wishes our society knew more about death. Williams-Paisley read Atul Gawande’s book, On Being Mortal, and “it really helped me understand more about what we face.” Her mantra: to “turn fear into faith.”
She advises families to have the caregiving conversation and to know a loved one’s wishes. Williams-Paisley said her dad and siblings have talked about their end-of-life and long-term care wishes after what they have gone through with her mom.
“Even if it’s just simply stating or writing a letter to your loved ones that says, “I love you, I trust you, I absolve you of any guilt over difficult decisions,’ it’s such a gift to have that conversation,” she said.
For Williams-Paisley, what started as a horror film with her mom’s diagnosis became an uplifting family movie. She is grateful for what she has learned as a caregiver. One of the greatest gifts is how she learned to be “present” for loved ones, she said. She’s also learned to look for the hopeful, happy moments in life.
She came up with the title for the book when listening to the Leonard Cohen song, Anthem, with these lyrics: “There is a crack in everything; that’s how the light gets in.” Even in the depths of PPA, she says of her mom, “You are still my teacher.”


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