VillageCare TODAY- Spring 2010

Spring 2010

TODAYTOD

The “New” VillageCareVillageCareTodayEDITOR-IN-CHIEF

LOUIS J. GANIM

MANAGING EDITOR

BRETT C VERMILYEA

——————

PUBLISHED BY

VILLAGECARE

154 CHRISTOPHER STREET

NEW YORK, NEW YORK 10014

CHAIRMAN

DAVID H. SIDWELL

PRESIDENT & CEO

EMMA DEVITO

WWW.VILLAGECARE.ORG

(212) 337-5600

BY EMMA DEVITO, PRESIDENT AND CEO

THE MAGAZINE YOU HOLD IN YOUR HANDS IS PART OF A TRANSFOR-

MATION THAT HAS BEEN TAKING PLACE AT VILLAGECARE OVER THE

PAST YEAR.

We’ve been breaking down the barriers among our programs so that you – our

patients, clients, families, friends and donors – can see us not just as an array of many

services for the community, but as a single entity committed to your better health and

well-being.

For example, we used to treat our services for older adults and those for persons liv-

ing with HIV/AIDS quite separately. We no longer make that distinction, seeing our

“new” organization as serving everyone in all our settings regardless of their diagno-

sis. We no longer divide our care between AIDS services and senior care, but instead

arrange what we have to offer in a more logical breakdown as either community care

or residential care.

You’ll note too that we have a new logo, and we’ve shortened our brand to reflect what

most people know us as: VillageCare.

We’ve renamed this magazine too, because where the former New Horizons focused

primarily on information and news about matters of interest to seniors, VillageCare

Today focuses on what matters to all those whom we serve. The people we serve, by the

way, reached more than 13,000 in number in 2009.

We are still the same caring and responsive organization that so many of you have

come to know, whether you’ve been with us for many years, or just recently came into

our family.

But, VillageCare offers so much, to so many people with so many different needs,

that we thought it was time that we put it all together for you.

In the coming months and years, we at VillageCare will continue our deep commit-

ment to the communities we serve. This coming fall, for example, we will be unveiling

our newest offering, VillageCare’s state-of-the-art Rehabilitation and Nursing Center.

It’s something to look forward to.

S P R I N G 2 0 1 0 | V O L U M E 4 , N U M B E R 1

D E P A R T M E N T S

F E A T U R E S

In the News 2Using Robots to Serve Older Adults at Home; HIV/AIDS Message For Thousands; Researcher Explores Link Between Social Anxiety and Risky Behaviour Among Same-Sex Partners; Health Center Is A Global Model; Taking Medicine for HIV Is A Hard Pill To Swallow for Many People; The Professional of the Year Helps Those in Need; Honoring a VillageCare Hero

Senior Perspective 7What are your hopes for 2010 and beyond?

Opinion 30The Challenges of Aging for an Older Population; The Long Goodbye

The Last Word 32Being Polite. It’s Just That Simple.

8 Nobody Said It Would Get EasierBY BONNIE ROSENSTOCK

AS WE AGE, DATING RULES DON’T GET ANY LESS COMPLICATED

12 A Lifetime CommitmentBY JESS ESPINOSA

LUCY CECERE JUMPS INTO THE FIGHT AND MAKES AN IMPACT

16 Health Center For Every SeasonBY BONNIE ROSENSTOCK

CHELSEA CENTER SERVES EVERY CONDITION, EVERY AGE

24 A Burden and a BlessingBY BONNIE ROSENSTOCK

HOME CARE CAN BE BOTH CHALLENGING AND REWARDING

20 A Lot More Than A Hot MealBY BRETT C VERMILYEA

MOMENTUM PROJECT’S MISSION IS FELLOWSHIP AND SUPPORT

2 Vil lageCare TODAY | Winter 2010

In the News

Newswise — Robots that lend a very human-like helping hand to healthy seniors with limited mobility may be on the horizon.

“We want to help elderly people com-municate with robots, to tell them what they need, and to perform physical activi-ties,” said Miloš Žefran, associate pro-fessor of electrical and computer engi-neering at the University of Illinois at Chicago.

Žefran is lead investigator in a three-year undertaking to develop software that would allow older adults to communicate with robots that can respond to a wide range of verbal language, non-verbal ges-tures and touch. The effort is being financed by a grant of nearly $1 million from the National Science Foundation.

“If we can help people remain inde-

pendent and continue living in their own homes, that will improve their health outlook while relieving the burden on family members and health care provid-ers,” Žefran said.

Žefran’s expertise is in robotics and computerized sense of touch while other team members specialize in computer vision and pattern recognition, natural language processing, and nursing care for the elderly.

Communication software in the robot will allow it to comprehend speech altered by impairments and to learn and adapt to such speech. By combining techniques from natural language processing and touch, the robot will understand and cor-rectly respond to various forms of human touch. It will also know how to respond to the user safely when performing everyday

chores such as cooking or making a bed.The research team will program and

test a robot and devise refinements as the project progresses.

“The human-robot interface is really a long-standing, open problem that won’t be solved in three years,” Žefran says. “But we’ll have a working prototype by then, and we’ll know what additional research needs to be done.”

Žefran added that this research could also find widespread use in delivery of institutionally based health care, where routine tasks now done by nurses could be handled by robots. “If robots can alleviate some of the burden nurses face, they then could spend more time where they’re really needed — provid-ing the human contact that a robot can’t replace.”

Using Robots to Serve Older Adults at Home

VillageCare TODAY | Spring 2010

3

HIV/AIDS Message For Thousands

For the two-month period leading up to this past World AIDS Day, VillageCare sponsored a 15-second

video spot promoting HIV testing and treatment on the CBS super screen on 42nd Street, seen by thousands of New Yorkers and tourists daily.

The video message urges people to “Get Tested. Get Treated. Stay With It.” That’s the theme of VillageCare’s “No New Infections” prevention campaign, which sees testing and treatment as the foundation of AIDS prevention.

The message ran once each hour every day throughout October and November, ending on World AIDS Day, Dec. 1. The video can be seen on VillageCare’s website (www.villagecare.org).

Viewers of the message were urged to contact VillageCare’s Health Center on 20th Street in Chelsea, where HIV test-ing is available.

Health Center Is A Global Model

T wo professors from the International University of Health and Welfare in Tokyo,

visited the VillageCare Health Center in Chelsea recently to examine how nurse practitioners function in health care settings in the United States. This was the second time in a year that professors from the university visited the clinic setting to learn about nurse practitioners. They learned of the center through a Hunter University graduate student. A nurse practitioner program started up in Japan since the first visit, fol-lowing the same curriculum of the programs in the U.S. The two most recent visitors gave a $200 dona-tion to the Village Center for Care Fund, which supports VillageCare’s programs. In the photo, from left, are: Michelle Samuels ANP, VillageCare employee health manag-er; Miho Suzuki, RN, Hunter College grad student; Mineko Niino, RN; Hisayo Maeda, nurse midwife, and VillageCare Health Center Director Nicolas Rosetti.

Newswise — Why are some men, both HIV-positive and negative, still engaging in risky activities with male partners?

Dr. Trevor Hart, director of the HIV Prevention Lab at Ryerson University in Canada, is conducting a comprehensive study to find out the answer to this per-plexing and alarming question.

In a four-year study called the Sexual Health and Attitudes Research Project (SHARP), the psychology professor is examining the connection between social anxiety and its effect on men who have unprotected sex with other men.

“Higher social anxiety is associated with risky behavior, but we’re not sure why,” Dr. Hart, the study’s principal investigator, said. “One of our hypothe-ses is that social anxiety carries over into sexual encounters, making it difficult

for some men to take necessary precau-tions against HIV if they think it will be perceived negatively by their partner.”

Dr. Hart and his research team have interviewed 300 men from the Greater Toronto Area to better understand the link and develop practical solutions.

The SHARP study, which is funded by the Canadian Institutes of Health Research, is one of several research proj-ects being conducted at Dr. Hart’s lab.

“Preventing HIV transmission is the mission of our lab,” Dr. Hart said. “Ultimately, we want to know how we can help people.”

Dr. Hart recently presented some of his research findings to-date at confer-ences in New York City and Toronto. The findings from Dr. Hart’s SHARP study are expected to be published with-in the next two years.

Researcher Explores Link Between Social Anxiety and Risky Behaviour Among Same-Sex Partners


Newswise — Highly active antiretroviral therapy has increased the longevity and quality of life for people living with human immunodeficiency virus. But it requires strict adherence in taking the medicine, something that is extremely difficult for many individuals to do.

Two new University of Washington stud-ies illustrate just how hard it is to make sure people take their HIV medication. One study looked at the effects of drinking alco-hol on adherence and showed the risk for non-adherence was double among drink-ers compared to abstainers. The second study evaluated interventions using peers, electronic pagers or both, and showed that these tools promoted no lasting improve-ments in adherence rates.

“HIV is unique in the adherence levels needed to be effective,” said Jane Simoni, a University of Washington psychology pro-fessor who specializes in studying adher-ence. She is a co-author of the alcohol study and lead author of the other. “Typical adher-ence for people taking medication is 50 per-cent. But 50 or 60 percent adherence isn’t going to work for HIV medications and will lead to resistance to the drugs. Taking drugs for HIV is a lifetime commitment; you are married to the pills,” she said.

The alcohol paper analyzed data from 40 previous studies involving more than 25,000 people and established that drink-ing does have a consistent effect on adher-ence across studies.

“Drinking quantity, more than frequency of drinking, is associated with non-adher-ence,” said Christian Hendershot, a post-doctoral researcher at the University of New Mexico who was lead author of the alcohol study. “In general, people who drank alco-hol had nearly twice the risk of non-adher-ence. But the risk of non-adherence went up as the level of drinking went up,” he said. “At problem levels of drinking we see a higher probability of non-adherence.”

However, Hendershot cautioned that these finding don’t necessarily hold for all people on HIV medication who drink.

“Alcohol may have a causal effect, but there also may be other factors affecting

both alcohol and adherence that partly explain the association. We need to treat people individually.”

For the peer-pager study, researchers recruited 224 patients being treated at a Seattle clinic. Patients were randomly assigned to one of four treatment groups — peer, pager, combined peer-pager and treat-ment as usual — for three months.

Patients with peer support attended twice-monthly meetings with other partici-pants and trained HIV-positive peers who provided medication-related social support. Peers also called participants weekly to pro-vide more one-on-one feedback. Participants in the pager group were asked to carry a customized device when they were awake.

The two-way pagers came with messages that were timed to each participant’s daily medication schedule.

The pagers also sent educational, humor-ous and adherence assessment text mes-sages. Participants in all four groups also received the usual care at the clinic including an educational program that provided infor-mation about the medication and adherence in a series of three meetings with a pharma-cist, nutritionist and case manager.

The participants “self-reported” on their adherence two weeks after the study began and again at three, six and nine months. An electronic pill cap and bottle also was used to monitor medication taking. Every three months they also had blood drawn to measure the levels of HIV and white blood cells in their system. For this study, adher-ence was defined as taking medication 100 percent of the time over the past seven days. The typical patient on the highly active antiretroviral therapy takes one or two pills once or twice a day.

Simoni said patients who had peer sup-port initially showed some increased adher-

ence levels, but this didn’t persist once the support ended. The pagers did not success-fully promote adherence at any point.

“We can change adherence a little, but it disappears when the intervention is taken away,” Simoni said. “Even though you are capable of doing something that doesn’t mean you are motivated to do it all the time. Just ask anyone, ‘Did you exercise yester-day?’ ‘Floss your teeth?’ ‘Avoid sweets?’

“Add to this the complication that a person has to take these meds every day for a life-threatening disease. There is a lot of emotional baggage surrounding the disease and the pills, and the medications have severe side effects.”

So what is needed to promote better

adherence?“We looked for less intensive solutions.

But they didn’t work,” Simoni said. “What we need are very individualized compre-hensive programs. And to sustain adher-ence, the intervention must be as dynamic as the changes in people’s lives.”

The studies also have broader societal implications and Simoni believes adherence will be a major problem in the years ahead as the nation’s aging baby-boom population takes its medications to stay healthy.

The studies, published in the Journal of Acquired Immune Deficiency Syndromes, were funded by the National Institute on Alcohol Abuse and Alcoholism, the National Institute of Mental Health and the UW Center for AIDS Research. Co-authors of the papers are David Huh, Cynthia Pearson, Michele Andrasik and Dr. Peter Dunbar of the UW; Susan Stoner of Talaria, Inc; David Pantalone of Suffolk University; Pamela Frick, formerly of the UW-affiliated Haborview Medical Center UW, and Dr. Thomas Hooton of the University of Miami.

Taking Medicine for HIV Is A Hard Pill

To Swallow for Many People

Taking drugs for HIV is a lifetime commitment; you are married to the pills.“ ”


5

Ken Stewart, who directs VillageCare’s

Community Case Management pro-gram, has received the “Professional of the Year” award from the New York Association of Homes and Services for the Aging. NYAHSA annually gives the award to an individual demon-strating outstanding accomplishments in the long-term care field.

Stewart’s dedica-tion to helping those in need has has often been the springboard for new initiatives by VillageCare. A few years ago, he created and spearheaded an effort to find ways to help “low-threshold” persons living with HIV/AIDS. This undertaking ultimately led to the affiliation of VillageCare with The Momentum Project, expanding capacity to help those who are difficult to serve and need extra help.

NYAHSA, in presenting the award, said that with his combination of creativity, determination and compassion and his strong commitment to those in need, Stewart has inspired his staff and others. He offers constant encouragement to others that they can make a difference.

Honoring a VillageCare Hero

The international organization Aid for AIDS honored VillageCare’s Daphne Rivera with its 2009 “My Hero” Award, which is given

annually for outstanding activism.Rivera, who works in VillageCare’s Community

Case Management program, received the award at the Aid for AIDS gala held at the Puck Building in New York City on December 1.

In announcing the award, Aid for AIDS said Rivera was being honored “for her outstanding activism on behalf of people living with HIV and AIDS in New York City.”

The awards program from the event stated: “As a woman, mother, and person living with HIV, Ms. Rivera has fought passionately against the pandem-ic. For 11 years, she has advocated on behalf of the Latino and African American community, ensur-ing that their voices are heard. More than 7,000 people effected by HIV can testify to her work, not only as a vocal activist working to improve the quality of care available for her peers, but also as an advisor and educator for her community. Daphne is truly a hero in the fight against HIV and AIDS and we are proud to honor her accomplishments.”

Rivera was honored alongside Dr. Julio Frenk, dean of the Harvard School of Public Health, for his work on behalf of people living with HIV and AIDS on the public policy level, and actor Mark Consuelos for his efforts to create awareness about HIV and AIDS.

Earlier in 2009, Rivera was recognized by VillageCare for her efforts to improve the quality of life of persons living with HIV/AIDS. She received the Nicholas A. Rango Award at the St. Patrick’s Day fundraiser sponsored by VillageCare board member Rev. James J. Gardiner.

Quotable

Helene Gayle, M.D.President & CEO

CARE(Cooperative for Assistance

and Relief Everywhere)

“In this country, about 30 percent of new [HIV] infections are occurring among women. Compare that to 10 or 15 years ago when eight to ten percent of our infections were among women.”

NYAHSA’s “Professional of the Year” Helps Those in Need

Ken Stewart, center, accepted NYAHSA’s “Professional of the Year” Award at a special luncheon held by the

statewide organization in Saratoga Springs. With Stewart are Village Care President and CEO Emma DeVito and Carl Young, former NYAHSA president.

MARYANN DURINSKI, Greenwich Village I hope that the new year brings an

end to these wars that we’ve grown accus-tomed to. I also hope that the new year brings

me good fortune in maintaining my current level of health, and be able to con-

tinue with the activities that I am engaged in now. I volunteer in

the community and find that extremely satisfying. I hope

that I will be able to con-tinue my volunteer work

through the new year and beyond.

What are your hopes for 2010 and beyond?

S E N I O R P E R S P E C T I V E

LINDA SMITH, Greenwich Village My hope is to finally get an apartment through the NYC Housing program. I have been fortunate to

have friends help me along the way and take me into their homes, but I am hoping that I will not have to rely on them much longer and be able to have a place of my own. The housing situation for seniors has been a mess for quite some time,

and I hope that the coming year will bring some resolution to that. As a fitness instructor for seniors, my other hope is that more seniors recognize the need to stay fit, and take advan-tage of the many resources that are available to them to ensure that.

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ANNABELLE GREENBERG,Greenwich Village On a broad scale, my hope is for peace to be brought around the world and here in the U.S. For myself, I hope to gain more flexibility with what I can do in my life. I currently have many issues that tie me down to this city, but I would love the opportunity to be able to travel abroad, and do exciting things that I have always wanted to do. I hope that my health maintains a good level so that I can be able to do these things as well.

PHIL SAUERS, West Village As an activ-ist and strong supporter for environmental health, my hope for the new year is to see national focus sway from war to protecting our environment, in particular our waters. We take water for granted, but as the years go on, our water supply is becoming more and more polluted and contaminated. We need water to live and prosper, and I urge the world to take notice of this serious, yet quiet prob-lem.

VICTORIA PETRILAK, Greenwich Village Myhope is to be able to continue as I am and enjoy life to the fullest. I have many hobbies, and I

always like to try new things. I have been fortu-nate to stay healthy to be able to do these things.

For our country, I hope things can improve. We’re not really in a good place right now, and I hope that

the situation can take a turn for the better. I think the administration is trying to tackle too many things at

one time, and I hope that they realize that there is no quick fix to this problem. For our younger

population, I hope that the employment situ-ation gets better. There are too many good

people out of jobs right now.


The media and public are enthralled with heartwarming stories about people finding love and romance in later life. Who could not help but fall for the story about the 83-year-old couple that met online and got married, reported on the front page of The Villager, Manhattan’s

downtown newspaper. Harvey Meltzer met his wife, Phyllis Wolf, on Match.com, and their vigorous e-mail conversations

quickly turned to hour-long phone conversations.“I told her I walked with a cane,” Harvey said. “Which hand do you hold the cane?” she asked.

“The left,” he answered. “That’s good, I hold my cane in the right hand,” she said.Within the year the couple had a wedding and the guests included their grandchildren.The public also takes delight in tales of high school and college sweethearts rekindling

old flames after a separation of decades and other marriages. It loves the kind of story related to me by Anna, a retired illustrator, about a friend of hers who just got mar-ried at 82. “They met at a swimming pool. Very few of us at our age look good in bathing suits,” she joked. “But it was love at first sight. She said it’s the best marriage she’s had, and it’s her third.”

Are they the exceptions to the rule? Does finding love in the silvery light of December defy the odds? To start off, when I broached the subject of senior dating to people in their sixties, there was an immediate refuta-tion of the word “senior,” which for most of them connotes old, or decrepit, or past one’s prime. If fifty is the new forty, and sixty is the

Nobody Ever Said It Would Get EasierThe Rules for Dating May Change As We get Older, but They Don’t Get Any Less Complicated

9

By Bonnie Rosenstock

83-year-olds Harvey and Phillis Wolf Metzler met on Match.com. They were married within a year.

PHOTO BY TEQUILA MINSKY


new fifty, then people squinting at the second half century do not consider themselves in the senior category despite AARP harp-ing. The first real depressing sign that you might be huffing over the hill is not that white hair or new wrinkle that wasn’t there the day before, but AARP mailers that begin filling up your mailbox starting before you are even 50 and increasing in frequency and urgency with each passing birthday.

But as one very youthful-looking woman quipped, “I haven’t been a senior since I graduated from college.” Larry, retired, in his mid-sixties, eschewed the word senior for himself, but then went on to say that he prefers dating women in their forties “who aren’t seniors.” Baby Boomers, being born after 1945, lie just south of 64, and as everyone knows, there is no way in hell they are ever going to be seniors. Ever. In fact, when I contacted organizers of dances and meet-ups for those above the age of forty, they declined to be interviewed about senior dating, saying they felt uncomfortable discussing the issue and didn’t like the terminology.

Once over the senior designation hurdle, those who agreed to tell all (on condition of anonymity) were forthcoming and frank. At one extreme was a thrice-married foreign-born woman in her early seventies, who thought it was disgusting and ridiculous to date at this stage of the game. “They want to act like teenagers,” she sneered. “They need to grow up and get over it and live their own lives.”

At the other extreme was a 66-year-old, self-described “hot woman,” who currently balances two boyfriends (they know about each other), and is open to any others that might come her way. “I will have sex until I die,” she declared. As a writer who does readings and performance work, she said men come up to her and come on to her all the time. “I have never had conven-tional goals,” said the twice-married “hottie.” “There is pressure on women to shrink and shrivel up when they get older. It’s so sad. I tell them to wear sexy dresses, show cleavage, go out and have a good time,” she asserted.

Despite the growing role of Internet senior dating sites and chat rooms in connecting folks, the majority of people said they met through mutual friends or mutual interests. Cindy was 66 and just retired when she met James, then 82, at a political club they both belonged to. Before that, she had accepted that she wasn’t going to meet anyone, or, if she did, the relationship wasn’t going to go anywhere, and she was leery of online dating. After overcoming her initial reticence due to difference in age, they became inseparable. “We were activity partners and had common values and mutual respect. There was hugging and affection,” she said. They were together for five years before he died in 2009.

Janet, a retired nurse in her mid-to-late-sixties and divorced for many years, told me that almost everyone she knows who is dating met through a mutual friend, but due to set habits, the relationships don’t seem to last that long, “no matter how nice the individuals are.” She went on, “It might be that those of us who have been independent many years find it difficult to adapt to the kind of cooperative lifestyle relationships demand. Too, if one has not shared space with another in many years, suddenly having someone around all the time is not easy. I found I still wanted to see my friends by myself, and they preferred that too, and really didn’t want my ‘boyfriend’ hanging around so much.”


11

After less than a year together, she broke up with her boyfriend last spring, finding him “too needy.”

The two successful couples she knows spend a lot of time apart. In one, her friend lives in the States and visits his girlfriend in Israel for two or three months and then returns home, and in the other, her friend’s boyfriend is often out of town for days at a time visiting his family or friends who live in another city. The one man she knows who met someone through Internet dating has broken up with her. “Couldn’t stand living together,” Janet said.

My 74-year-old long-married cousin in Boynton Beach, Florida, reports a similar arrangement. She said that most dat-ing seniors she knows go to dinner, theater, movies, take trips together, have sex, but maintain separate residences. They usu-ally don’t marry because of their children, or are afraid that the other person will use up all their life savings, or they will have to forfeit some of their social security benefits.

In New York, dating is difficult at any age. In a recent New Yorker magazine Talk of the Town section, entitled “Happy Hunting,” Michael Silverstein discussing his new book, “Women Want More: How to Capture Your Share of the World’s Largest, Fastest-Growing Market,” co-authored with Kate Sayre, said, “Women in New York have enormous issues with money, enormous issues with time. They are more likely to get divorced, and they are more troubled about finding love.”

On the positive side, Silverstein continued, “New York women have more friends than anyone else on the planet,” and his visit to a New York yoga center “was the friendliest, most conversational, most open” of anywhere in the U.S.

Another one of those interviewed was Lenny, who enjoys dating, but doesn’t like the pressure of having to shell out big bucks for dinner. “The money aspect is tricky,” he said. “I don’t like overpaying to impress someone.” Although he would like to find a partner, he won’t do it online. “I have to tell my age, show a photo. Most women under 55 say I am too old. When I meet them face to face at dances, the initial impression is different,” he said.

Larry, too, has a large circle of friends, both male and female, that he hangs out with at dance clubs and at weekend dance getaways. “There are so many distractions in New York that people are just too busy to date,” he observed. “And hardly anyone is marrying.” He knows about eight to ten couples who are dating steadily, but not living together. Also, some of his friends have aging parents in their eighties and nineties to take care of, so they don’t have time for a full-time relationship.

Anna, divorced at 40 and now 78, has made good friends through her ceramics class at an East Village senior center. She commented that the great fulfillment in life is to find a friend, “a partner to share an activity would be better,” she said, “but I’m not looking for a relationship. I’m done attending to everybody else’s needs. Friendships replace other forms of intimacy.”

So, there you have it. Seniors who date and seniors who don’t. Seniors who find love and intimacy and seniors who find friendship and intimacy. Seniors who are pursuing their passions and interests. With or without a partner, enjoying life to the fullest is the ultimate self-affirming goal.

12 Vil lageCare TODAY | Spring 2010

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Much has been written about Lucy Cecere. To the friends of VillageCare, the stories are familiar.

It is known that in the early 1970s, Cecere co-founded Caring Community to cater to the needs of older adults in Greenwich Village. With her characteristic spunk and perse-

verance, she galvanized four churches to serve lunches to needy seniors when the state refused funding on the grounds that Village residents “have money.”

Today, the Caring Community, serves 2,000 seniors at five different sites and provides other social services such as home repairs for the homebound and arts

and crafts, language study, exercise and other activities that stimulate aging minds and bodies.

In 1975, Cecere and concerned neighbors came to the rescue of Village Nursing Home when the state threatened to close it. She, with an

By Jess Espinosa

A Lifetime Commitment

WhereverLucy Cecere sees a need — such as “saving” Village Nursing Home — she throws herself into the fray


army of volunteers, collected donations door-to-door and held bake sales and auctions to fund their fight. Garnering media coverage and the attention of then-First Lady Roslyn Carter, donations came in from all over the country and the world, helping the Caring Community to take over the nursing home and ultimately create a separate not-for-profit organization (today’s VillageCare), which oversaw renovations in the early 1980s.

Cecere spearheaded activities that made the seniors at Village Nursing Home feel loved and remembered — presenting them with flowers on their birthday, preparing festive dishes to cel-ebrate Seder with Jewish residents, putting up Christmas decora-tions and bringing food and gifts.

The ultimate source of her drive for these remarkable accom-plishments is her love for the city that she has called home all her life, particularly that part called Greenwich Village, or simply “the Village” to those in New York. Her mother once told her, “if you like where you are living and like to stay there and keep it nice, you have to give something.”

Cecere’s roots are firmly entrenched in the Village. She was born on May 21 (“never mind the year!”) on Thompson Street. She has many fond memories of the Village when life there lived up to its name, a place with small-town, neighborly charm. She remembers trips to the tiny neighborhood grocery store to buy milk that turned into one-hour jaunts because there were too many storekeepers and friends to greet and chat with on the way home. “Everybody knew everybody!”

There were only a few pizza parlors then, but their pizza was memorable. The corner drug store had a soda fountain that offered a variety of refreshing treats all year round. Children played out in the street, undistracted by television, video games and other technological what-nots, while their parents chatted from the stoops. In the morning, the crowing of roosters in the chicken market across the street from her family home wakened the neighborhood, and there was a stable nearby. “We had a lot of fun with the horses,” she recalls.

As a young girl, she wanted to be a fashion designer. After graduating from the Fashion Institute of Technology, she worked in the bridal section of the old B. Altman Department Store. One of her co-workers introduced her to a man who was fresh out of the Army. “He was very funny, very nice,” she said, and she went out on a date with him. On October 5, 1949, she and that man, Lenny, married, and went to Cuba for their honeymoon. In 2009, they celebrated their 60th wedding anniversary. Their two children, a son who is a bankruptcy lawyer, and a daughter, who works in the financial sector, would like to send them back to Cuba to celebrate their milestone anniversary.

After giving up her job at B. Altman when her kids were born, Cecere taught dressmaking to children and adults at one of Children’s Aid Society programs. Her compassionate nature caused her to take action when she discovered how difficult life was for the underserved elderly population of the Village, leading to the formation of Caring Community. The rest, as they say, is history.

Lucy and Lenny own a landmarked building — built in 1846 — at the corner of MacDougal and Houston. The storefront run by Lenny is called Something Special, a name inherited from one of its former functions. That space has reinvented itself several

Above: The young Lucy Cecere. Below: The building where Something Special is located is a landmark.

times over, from an Italian restaurant to a bakery to a card shop. About 20 years ago, after serveral failed attempts to make the storefront viable, a serendipitous thing happened – Lenny rescued several mailboxes that a building super was going to throw in the dumpster, and he came up with what turned out to be a brilliant idea. He got himself bonded by the post office, installed the mailboxes on one side of the shop, and turned Something Special into what it is now – a neighborhood mail pick-up center.

The shop cum post office, with its cluttered display of rem-nants past has a charming appeal about it — boxes of yellowing Christmas cards here, some wide and skinny neckties there, an assortment of doodads, figurines and toys clutter the dusty shelves, and old magazines and books flood the floor, some selling for a dollar, some a bit more. The store is out of place in the expectations of Greenwich Village. Its clientele consists of Village characters and a sprinkling of celebrities who come everyday to pick up their mail, catch up on the latest gossip and see how everyone is doing. (Matthew Broderick, who grew up in the neighborhood and lives with his wife Sarah Jessica Parker on nearby Charles Street, is a regular.) In the back of the shop a shelf holds framed photos of Lucy and Lenny with their famous friends. And all year round, Christmas or not, a clock plays Adeste Fidelis every hour on the hour.

As for the Village surrounding the store, it’s changing.“It has broken my heart many times,” Cecere said. Beautiful

old buildings are knocked down and replaced by homogenous steel-and-glass boxes without character but with rents once unheard of in this part of the city. Now, except for a few hold-overs like Something Special, most all the old businesses are gone.

Recalling her mother’s words, Cecere engages in a new battle — the protection of this neighborhood she loves. With its cobblestone streets, hidden gardens, quaint shops, towering ancient trees and stately brownstones, she’s determined to fend off greedy developers interested more in profit than the neigh-borhood’s heritage and character.

Cecere is right there with concerned Village residents, church leaders, members of the Greenwich Village Society for Historic Preservation and others, calling for landmark status for the entire South Village.

Her life’s work has earned her many awards, honors and commendations, and she was featured VillageCare’s 2009 Legends of the Village calendar. Known for bringing happiness and caring to many people, Cecere appeared as the December legend, a month of gift-giving, togetherness and joy.

In November 2009, Cecere received the Woman of Distinction Award from State Senator Thomas Duane in a cer-emony at Our Lady of Pompeii Church attended by some 100 of her fellow Villagers. She was also presented with proclama-tions honoring her from City Council, presented by Speaker Christine Quinn, and from Manhattan Borough President Scott Stringer.

The Villager quoted State Assemblywoman Deborah Glick at the event: “Lucy has always had an internal compass about what is the right thing to do. And she does it with grace, elegance and a strong personal commitment to those who need her help. We are not just proud of her, we are grateful to her.”

15

Above: Something Special is a favorite neighborhood hangout for many, including the friendly crossing guard for the nearby St. Anthony School. Below: Lucy Cecere collects signature for

the landmark designation of South Village.



A Health Center For Every

Season

VillageCare’s Chelsea Center Serves

Every Condition, Every Age


17

While the nation debates the future of the ailing health care system, each day ordinary people are dealing with the stressful, time-consuming task of finding

the right doctors for what ails them. Fortunately, VillageCare’s Health Center is just what the doctor ordered.

The three-year-old medical center at 121A West 20th Street in the heart of Chelsea brings primary care physicians, nurse practitioners, dentists and podiatry services all together under one wellness roof.

Nicholas Rossetti, the center’s director, said the primary care facility offers a full array of services in a setting that “provides coordinated care integrated across all elements of the complex health care system.”

Rossetti says that the Health Center sees the patient-cen-tered “medical home” model of primary care, something the medical community envisions being implemented throughout care settings, as the ideal in terms of getting high-quality care delivered efficiently to individuals.

“The physician includes the patient in all decisions they are making,” he said. “It’s a real partnership. It respects the patient’s wants, needs and preferences, adding up to real cus-tomer service.”

Dr. Lawrence Hitzeman, the center’s medical director, points out that the center’s intimate nature is an important plus. “We are not a big bureaucracy,” he said. “The patients get to know everybody, and the staff works well together, which makes the

clients comfortable. They feel happier here.”The Health Center’s clientele is varied.Dr. Hitzeman specializes in internal medicine. He sees a

number of patients who are HIV positive, and in his practice he stresses the importance of preventive health care to keep people from having to go to the hospital. “We want them to save their

immune systems instead of waiting until they get very sick before they seek treatment, often too late. The idea is to keep them healthy, so they don’t have to utilize hospital services.”

One of his colleagues, Dr. Veeraf Sanjana, is a general inter-nist, board certified in infectious diseases.

For Dr. Sanjana what makes the center unique is that the

VILLAGECARE HEALTH CENTER121A West 20th Street, between Sixth and Seventh Avenues

Telephone: 212.337.9290

Hours of Operation:Monday and Thursday, 9 a.m. to 6 p.m.

Friday 9 a.m. to 5 p.m.Saturdays (twice monthly) 9 a.m. to 4 p.m.


staff provides individualized services to a group of patients that often don’t get that kind of attention in a hospital or a city clinic. “Underprivileged patients who often have Medicaid or ADAP [state AIDS Drug Assistance Program insurance] don’t get to see private doctors in the community because most doctors don’t accept these insurances,” he said.

The VillageCare Health Center also accepts most major commercial insur-

ances as well as Medicare. There is a sliding scale for those with-out insurance.

“People come here because at a hospital or city clinic they have imper-sonal service in general, at least that’s what the patients report,”

said Dr. Sanjana. “They are very happy to get a private doctor that takes Medicaid.”

He also sees people with mental health issues, routine medical problems, like high blood pressure and diabetes, and people referred by their employers for routine medical check-ups.

Given that 23.7 million Americans, or 7.8 percent of the population, suffers from diabetes — 5.7 million of them u n d i a g n o s e d — it’s notewor-thy that another of the Center’s primary physi-

cians, Dr. Jean-Louis Salinas, also special-izes in diabetes. Other specialists include a psychiatric nurse practitioner, who does psychological evaluations and prescribes medication as needed; a psychologist for counseling, and a women’s health nurse practitioner, Niru Somasundaram. She provides routine pelvic exams, pap smears, STD testing, breast exams, birth control

counseling, menopause counseling and gynecological referrals for more serious issues.

“Patients come here because of the amount of time I have to spend with them,” she said. “All the providers are very thorough and conscientious. And it’s great to be able to walk over to them and have a consultation.”

VillageCare Health Center also has onsite facilities for venipuncture and blood workup, urine and sputum collecting; out-side laboratories do the results. The Health Center’s dental services opened last sum-mer, and Rossetti says the addition was well received by patients. “It’s been a big hit,” he said.

“The patients are satisfied with the den-tists,” he said. “Hopefully it will attract people for other services as well.”

The center has been attracting more and more clients since it opened its doors. “The advantage is we provide high-quality under a comprehensive umbrella of ser-vices,” Gerrido said.

Because the Health Center is part of VillageCare’s wide array of services, “we are in an excellent position to provide the pri-mary care needs of the community,” said Rossetti, reciting the list of the organiza-tion’s community and residential services. Those services include home care, adult day health centers, short-stay rehabilita-tion, skilled nursing care and assisted liv-ing, among others.

The VillageCare Health Center has a full complement of doctors, dentists, nurses and other professional health care staff, enabling the facility to offer patients a com-plete range of primary care, care for chron-ic and ongoing conditions and preventive services. The Center also offers supportive services such as nutrition, mental health services and social work, with a collabora-tive team that coordinates care.

The Center offers the availability of same-day appointments. Dental care is provided in a warm, friendly environment with the highest standards of dentistry and exceptional consumer care.

You can learn more about the services for VillageCare and the Health Center by visiting www.villagecare.org.


19

A Lot More Than A Hot Meal

Now Part of VillageCare, The Momentum Project Carries On its Mission

Of Fellowship and Support

By Brett C Vermilyea20 Vil lageCare TODAY | Spring 2010

21

On the last day in November, ducking out of a cold evening rain on a dark Second Avenue, a visitor walks through the glass-and-bronze

doors beneath the majestic stained glassed arches of Middle Collegiate Church. Once inside the dimly lit nave, he follows the rope line along the wooden pews that leads him to a large meeting room behind the altar.

It’s a Monday, and the meeting room is filled with the soft echoes of about a hundred people, mostly men, as they chat with each other. Some sit at the four long rows of tables, some roam the room greeting old friends. At the near end of the room is a small stage (there will be music later), covered with plastic grocery bags filled with food. At the far end is a kitchen and table set up buffet-style. Five or six young women, volunteers from the Leadership and Public Service High School, wait to serve the food being prepared by the chefs behind them.

Peter LaMarca greets the visitor with a gentle two-handed handshake, offering coffee and soup. The main meal will be served in about 10 minutes at 5:30. LaMarca is a volunteer for the Momentum Project, which has been feeding poor and homeless persons living with HIV/AIDS for 25 years.

Every day except Sunday, people coping with the disease can visit one Momentum’s 10 sites in four

boroughs for a hot meal and a take-home pantry bag of canned goods and fresh produce.

And though the food is the central focus of Momentum, Jan Zimmerman, the program’s adminis-trator, says the meals are only the entry point into their clients’ lives.

“We start with food as a basic need for anyone to survive,” she said. “Though clients don’t have to do any-thing but come in and eat — there’s no other structure or requirement — we use the meals to engage people in better self-care to survive, thrive and grow, to live the best possible lives they can live.”

She says HIV treatment is challenging even for the most stable individual, requiring several pills a day, every day, for the rest of life. Miss doses of HIV-specific medication and its effectiveness can be compromised. On top of the HIV medications many clients also take pills for the full range of other conditions that exist, both due to HIV disease and due to people living longer: diabetes, heart disease, high blood pressure, antidepres-sants. But for individuals whose lives are not stable — the people Momentum tries to reach — the challenges to treatment are much more daunting.

“About 80 to 90 percent of our clients struggle with mental illness or substance abuse issues,” Zimmerman said. “The medical community says HIV is a chronic


disease, like cancer or asthma, and is manageable, and if you take medication you’ll be fine. But HIV/AIDS is also a social disease. You contract it through activity like sex and drug use. And we need a socially based programs like Momentum to address its treatment and prevention.”

Having been a client since 1998 before becoming a volunteer who puts in four or five hours nearly every day, LaMarca says that, while the food is great — he just finished his meal of honey barbecue chicken, mashed sweet potatoes and buttered spinach — what’s kept him so involved over the years is the sense of being part of a community.

“It’s great because you can come here and be social,” he said. “I’ve gotten to know a lot of friends over the years. You can come here and talk your troubles, what you’re going through, what new drugs are available, new treatments. Society is still ignorant of the virus. Here, everyone is going through the same thing.”

Another long-time client, Damon Grandison, sits in the corner talking to Momentum Director of Client Services Donnell Tillman-Basket.

“I’ve been coming to Momentum for, let’s see, 15 years? No. It’s been 17 years,” Grandison said. “It’s about people and networking information about treatments, studies, focus groups. It’s like a second family. You can be gone for weeks, months, years even, but when you come back you are always welcomed like family.”

Zimmerman said this idea of a second family creates an important network of support because, even though there’s been huge advances in understanding HIV/AIDS over the last 20 years, there’s still a stigma.

“If you go home and tell your family you have cancer or diabetes, they put their arms around you and say, ‘I’m so sorry what can I do for you,’” she said. “But if you go home and tell them you have HIV, they bring out the plastic silverware and tell you not to use toilet and not to hug your nieces or nephews. That’s why people don’t generally disclose their status to their families.”

And because their clients don’t have many other options for care, Tillman-Basket says Momentum tries to use the meals to dispense as much care as they can.

“We provide one-stop shopping for our clients to get help with not just their nutritional and health needs,” she said, “but for their social needs, we want to make sure their needs are met by removing the barriers to care.”

LaMarca said clients appreciate all the options available. “It means a lot for them, for


23

me, to know that if you need help you get it,” he said. “If you need help finding an apart-ment, Momentum can help. There’s social services like that. Or you can talk to a chaplain if you’re depressed or talk about transmitting the disease.”

The services Momentum provides include nutritional counseling, substance abuse intervention, prevention education, mental health counseling, family services, health and adherence education, life skills training, services for people over 50 who can require special attention, housing and entitlements advocacy, pastoral counseling, referrals to outside services and support groups, nursing services and health education.

“A big challenge with our clients is that they are often disengaged from following up with their doctors.,” Zimmerman says. “The medical system can be not so friendly to our clients, and Momentum engages people at the point of service of a hot meal, confronting the barriers to treatment — when the need to connect a client to care is especially urgent, we even escort clients to their clinics.

In 2008, Momentum joined forces with VillageCare, creating sav-ings through combined operations and helping to ensure not only Momentum’s survival but helping expand its services and reach.

“I was very excited,” said Zimmerman, who is also the adminis-trator of Village Care’s two AIDS Adult Day Health Care Programs in Chelsea and the Lower East Side. “The Day Programs provide a treatment community which many clients can not sustain due to its requirements and structure. I saw the value of Momentum as a critical component of our continuum of care for people living with HIV/AIDS. For clients that I can no longer keep at the day programs, I now have a safe, supportive, and nourishing environ-ment that I can discharge them to. And at the same time, as our Momentum clients heal and seek more structured support services, referrals into her Day Programs, or VillageCare’s Case management program are a perfect fit.”

You can learn more about these services by going on the Internet to www.themomentumproject.org, and to www.villagecare.org.

24 Vil lageCare TODAY | Spring 2010VillageCare TODAY | Spring 2010

25

“Alice” is a single 45-year-old freelance com-mercial photographer, who looks after her 86-year-old father. They live in the same

building but not the same apartment. He is in the moderate stages of Alzheimer’s disease – “halfway between beginning and middle,” Alice said. Her two older siblings live out of state and do not con-tribute financially, so she shoulders the majority of the caregiving responsibilities.

“Mike” is a retired writer whose wife has been housebound for the last five years since she fell and broke her hip. She was not a candidate for physical therapy because she is in the latter stages of Alzheimer’s and can’t follow instructions. As result, she is confined to a wheelchair or her bed. They are both 75 and “have had a love affair for forty-seven years,” said Mike, and even though she has round-the-clock aides, he can’t bring himself to leave the house for very long.

“Barbara’s” mother has been a resident at The Village at 46th and Ten, VillageCare’s assisted liv-ing facility, since February 2006. As the unmarried sibling of three daughters all living in New York, Barbara is the go-to person for all questions and issues relating to her mother’s care. Her mother, 89, has mild-to-moderate dementia, and is incon-tinent; she is mobile with a walker although in the last year her health has deteriorated due to a fall in 2005, a more recent stroke and other compli-cations. “It’s almost a typical Victorian scenario of the unmarried youngest daughter being the caretaker,” Barbara said. “I mostly embrace it, as I have the most time and energy. But as my moth-er’s condition deteriorates, it has taken a greater toll on my stress level and my ability to live and handle my own depression.”

No matter how many different scenarios, they are all part of the same heartwrenching theme. Taking care of a loved one takes an emotional, physical and financial toll on the caregiver. Of the myriad websites devoted to primary caregiving,


A Burden and a BlessingTaking Care of a Loved One at Home Is

Both Challenging and Rewarding


one called www.homecaringadvice.com has delineated about 30 “symptoms of caregiver burnout.” They include: powerlessness, hopelessness, emotional exhaustion, inability to handle more than one problem or crises, isolation, despair, feeling trapped, apathy, crying, easily angered or annoyed, change in eating and sleeping habits, headaches, anxiety, impatience, resentment, harmful behavior to care recipient and escapist behaviors, such as sex, drinking, drugs or shopping binges to escape negative feelings.

Caregiving for those with Alzheimer’s is particularly stressful and one of the hardest situations for individuals to deal with, explained Lisa Bohmart, social work supervisor at VillageCare’s Adult Day Center at 644 Greenwich Street. “There are a lot of emotional feelings because the person is there, but not really there. There is also denial about them really being sick or more capable of doing things than they actually are because of the moments of clarity. It can be really confusing.”

Nancy Seigel, social worker at Village Nursing Home said that for a spouse, companionship is gone. “Seeing your loved one, a person who knows every-thing about you and now just looks at you, it takes a toll,” she said.

As Alice watches her father’s short-term memory slip away, she feels a sense of disequilibrium. “He can be

forgetful and ignore me; on the other hand, he will remember such details that it’s disconcerting as well. I never know what’s going to happen next,” she said. Moreover, she is learning how to sift out his moods, to determine whether they are a result of physical discomfort from his other illnesses or drug interactions, “instead of the terror of Alzheimer’s,” she said.

Competing demands often wreak havoc on the caregiver’s own state of mind. This is common for an adult child taking care of both a parent as well as their own children. Another example is the competition between the demands of a job and those of caring for a loved one. Barbara often has to take days or half days off from her job as a word processor in a law firm to accompany her mother to medical appointments.

She also faces the additional responsi-bility of dealing with caregivers she has hired to assist her – “whether training them or contacting the agency to replace them if it’s not working,” Barbara said.

“When I get a call at work that my mom is uncooperative with an aide, I have to deal with it within earshot of my colleagues. I have to intercede with a doc-tor when some medication or protocol is not working out. I have to get necessary paperwork to Village so they can comply with New York State regulations. The list goes on. Even when I am not with my mother, I am about my mother,” Barbara

said. As a result of all the pressures, she says she suffers from chronic depression but is not currently on medication or in therapy.

For a period of time Alice didn’t work at all because of “all the systems to work out,” she related. “My stress level was high dealing with the issues of day care, medications, Medicaid, food stamps and any other services we could apply for. Now for the first time in two years, I am calmer.”

Bohmart recommends that caregivers ask for help.

“They think they can do it all. Getting home care and taking advantage of ser-vices such as an adult day health care are important, she said. Alice agrees, relat-ing that because she must work to pay her rent, her father’s rent and mounting bills, she did not have the time or energy to engage and entertain him. “One per-son can’t do physical therapy, walks, sing-a-longs, art classes or cooking classes,” she said.

Alice is thankful that she found VillageCare’s Adult Day Health Center where her father has been going five days a week since April. On weekends, he goes to a center in Riverdale and through a grant, for two days a month he goes to a Chinese center near the Brooklyn Bridge.

“My dad is very social, so he loves it,” she said. “He gets to meet people, talk to them, nobody is down on him because of


In recognition of National Family Caregivers Month this past November, the Women’s City Club of New York sponsored a panel discussion entitled “Who Cares for

Caregivers?” on the challenges of caregiving, its inordinate impact on women and policy solutions that would ensure that caregivers are also cared for.

The three guest speakers are not only experts on these issues, but also have personal experience as primary caregiv-ers:

National Family Caregivers Association (NFCA), is a recog-nized national spokesperson for family caregivers and has tes-tified before Congress. Her husband has had multiple sclerosis since 1974.

her seminal Passages. Her new book about the caregiving cri-sis, Passages in Caregiving – Turning Chaos into Confidence, will be out April 20. Video interviews with families across the country who have found creative ways to take on the chal-lenges of caregiving are at www.aarp.org/gailsheehy. Sheehy’s husband, Clay Felker, New York magazine’s founding editor, died last year at the age of 82 after battling cancer for seven-teen years.

the United Hospital Fund, which focuses on developing part-nerships between health care professionals and family caregiv-ers, especially during transitions in health care settings. Her husband is a paraplegic as a result of an automobile accident.

In 1900, the average person lived to age 47. Now, thanks to modern medicine, it is 77. Therefore, this is the first genera-tion that has had to deal with the issues of chronic care and lingering diseases.

“It is so hard because we are starting from scratch and the systems are not set up to deal with family caregiving,” said Mintz. She stated that Medicare is primarily aimed at short-term acute care for people in their sixties, but people are living into their nineties. In fact, over-85 is the fastest growing seg-ment of the population. She asserted that Medicare monies are not being spent properly, and new services and new ways to look at the health delivery system are needed. NFCA has com-piled a comprehensive summary of bills pending in Congress related to family caregiving in such categories as respite, tax, social security/Medicare/Medicaid enhancements, family leave and health care reform. The organization has also published a statement on Principles, Plans and Policy Recommendations, available at www.thefamilycaregiver.org.

Sheehy added that the average caregiver is a 46-year-old

woman with a job, who spends at least 26 hours a week in caregiving responsibilities, averaging four and a half years in the role, with needs escalating. “Forty-four million Americans are affected, that is, one in four families. It’s a job that nobody applies for and everybody is unprepared for,” Sheehy said.

She recommends hiring an independent geriatric care man-ager, if one can afford it, because there are “ “traumatic jolts.” These include transitioning from one care setting to another – for example, from home to hospital, from hospital to rehabili-tation, as well as various other facilities along the way. Sheehy said that a geriatric care specialist understands the system and works with the caregiver to sort out the sometimes nightmar-ish medical bureaucracy involved in the patient’s care. Poor people have this service available, but the middle class is left out in the cold. Sheehy suggests that geriatric care manage-ment, a growing industry, be covered under Medicare.

Levine stated that family caregiving is a national problem, but at the same time, we should look locally for solutions. She pointed out that New York is the only state that doesn’t allow families to make end-of-life decisions unless you are a family proxy. Additionally, there are two bills languishing in the State Assembly (but passed in the Senate), Levine pointed out. They are the Family Health Care Decisions Act and the Paid Family Leave Act. California has passed a leave act similar to the one proposed for New York, but Levine pointed out that people seem reluctant to use it for fear of losing their jobs.

However, one bright light is the Collaborative Design Group, a forty- to fifty-team collaborative composed of six teams from New York – hospitals, nursing homes and home care agencies - that will work together to improve patient man-agement, scheduled to start this year.

“Caregiving is a lifespan issue,” stated Levine, “ranging from parents caring for their children with special needs, all the way to end of life. Palliative care is good chronic illness care.”

These are some websites for further help on caregiver resources:

-New York State Respite Coalition, www.scrny.org -New York City Family Caregiver Coalition, www.cscs-ny.

org/caregivers/index/php-www.nextstepincare.org-For New York City resources: www.netofcare.org-For New York City programs run by the Department for the

Aging (DFTA), call 311, or www.nyc.gov/html/dfta/html/home -New York State Senator Liz Krueger’s Resource Guide for

Seniors, 2009-20010 edition, downloadable at www.lizkrueger.com

27


Caring for The Caregivers


his condition and there are counselors to guide him. Before, he wouldn’t even get out of bed.”

Bohmart has helped Alice coordinate other ancillary services, such as medical supplies and medications, van trans-portation and an escort to some doc-tors’ appointments, for example. This helps free up Alice for her freelance work assignments. The help was indis-pensable in Alice’s navigation through the dizzying maze of documentation for Medicaid, allowing her father to qualify for a home aide twenty-three hours a week.

Caregivers may also find themselves doing unfamiliar, time-consuming tasks that the other person did for years. In Alice’s case, she does double duty by shopping, cleaning and cooking for her-self and her father, which includes pre-paring his special diabetic meals a few days in advance.

Mike says his wife used to maintain the household, do the shopping and manage the finances. Aides now take care of his wife, but he must look after himself. “The IRS just audited me, so apparently, I’m not doing such a good job with the taxes,” he said with a laugh.

Most of the clients at the VillageCare day center have Medicaid. “Medicare doesn’t pay for home care except after a hospital stay if there is some need, and it’s temporary,” explained Bohmart.

Unfortunately, many people fall in between the cracks. They don’t qualify for Medicaid but don’t have enough money either. “It would be great if Medicare paid for adult day centers, but it doesn’t,” Bohmart said.

Approximately 44 million Americans currently provide caregiving to family members or friends. If this level of caregiving were replaced by paid caregiv-ers, the cost would exceed $300 billion annually, according to a report by the National alliance for Caregiving and the AARP in 2004.

According to statistics published in last October’s AARP Bulletin, caregivers “provide care worth about $25 billion a year in New York, and it delays or post-pones costly nursing home care.” That translates to over 2 million family mem-bers statewide who provide these vital services. New York State provides only

$2 million for respite and social adult day services, which includes training volun-teers who come in so a family member can run errands or go to appointments, the article added.

Additionally, some medications, sup-plies, special pads for the bed and dis-posable underclothes are not covered by Medicaid or insurance companies and pull on the resources of the caregiver. Luckily for Barbara, her father provided for her mother very well, so rent, ser-vices and a private aide are taken care of. However, even with the addition of Medicare and an AARP supplemental plan, she still spends her own money on Fresh Direct for groceries, bottled water and a constant supply of dispos-able clothing because of her mother’s incontinence.

Caregiving for those diagnosed with HIV/AIDS presents a more complex set of issues. While the stigma attached to those living with the disease has lessened in recent times, “it’s a special caregiver who stays with the individual even though the person has moved to an AIDS skilled nursing facility, such as VillageCare’s Rivington House,” said “Diane.”

She said, “It’s terribly stressful. Many of the residents are abandoned, either because of their drug use that pushes

people away, or are shunned because of their AIDS diagnosis.”

Because a number of those living with HIV have histories of drug and alcohol abuse, the relationship between caregiver and patient might be tenuous. Some have been able to kick their habits, but others have not. “On top of taking care of someone who is sick, how do you take care of someone who is using?” Diane asked. “The HIV sufferer might shun the person who helps because the addiction is more powerful than friendship or fam-ily. The caregiver suffers the indignity of someone caring more about the addic-tion than human relationships.”

Having a social network is crucial for caregivers, whether it is other family members, friends or a support group. However, because of all the time they spend with the ailing individual, friend-ships and social contacts may fall by the wayside. On the other hand, people who are uncomfortable in the face of illness might walk away.

“It’s amazing how many people don’t want to talk to you once they know you have problems,” Mike observed.

Mike said that, against his better judg-ment because he is not a “joiner,” he started attending a support group at Village Nursing Home with Nancy Seigel about a year ago. He and the other male in the group are not otherwise involved with the facility. Through this, Mike says he realizes that others have problems as severe as his. “I have learned to help the other people, and it is good to talk out my problems,” he says.

Support groups help people struggle to cope, said Bohmart. Most of the older clients at VillageCare’s adult day program live with their caregivers. “A support group is a good respite for care-givers. It gives them a break for a few hours. I tell them they have to take care of themselves before they take care of anybody else, and they should do things they like to do,” she said.

Ironically, even the support groups face competing needs. At the time of her interview for this story, Bohmart said she didn’t have any support groups active at the day center. “People don’t want to commit. They are tired from working all day. Even though it is good for them, it’s another burden,” she said.


29

Sometimes primary caregivers lose sight of their own health and everyday needs. Although Mike has wonderful aides, he can’t bear to be apart from his wife. “I used to go to the gym three times a week. I know I have to get out of the house, do my exercises or go to a movie once in a while,” he admitted, although these are things he no longer does, or doesn’t do often.

“Fatigue leads to physical illness, which can lead to depression,” said Diane.

One website http://www.strengthfor-caring.com/ recommends that caregivers take a break for “personal renewal.” As the website puts it: “Take an afternoon; even all day. Enjoy it by yourself or with a friend. Do something self-indulgent. Take a walk in the park; go to a movie; find a relaxing area. Read a deliciously naughty novel. Take a nap if you weren’t able to get your 7-8 hours of sleep the night before.”

Alice attended some support groups a few years back for children with par-ents who have Alzheimer’s, sponsored by the New York City chapter of the Alzheimer’s Association, where she got invaluable legal, medical and financial advice and emotional support. She has ongoing access to a counselor at the association whom she can email with

any questions. “I might go to a support group again, but it’s hard to fit it in. I try to go to the gym as often as I can because I certainly need it. If I am not healthy, it will be more problematic. For the time being, the situation is somewhat stable,” she said.

Barbara and Alice also search for information online at primary caregiving sites. Barbara would like to participate in a support group, but she concedes that she is “in an in-between space.” She is a primary caregiver, but her mother does not live with her. Most support groups are for people who have parents in their home.

“I almost feel embarrassed to intrude. While it feels like 24-7, it isn’t. I have a psychological need for one but can’t compare my lot with someone who has no staff aid. It’s a grey zone, which isn’t addressed,” she said. In addition, she has no children, so she is not the sandwich generation, caught between children and parents. “But more support needs to be in place on all levels,” she asserted.

Today, the issue of caregiving is becom-ing increasingly urgent, particularly to aging Baby Boomers, who are both the caregivers and the cared for. Because of the miracles of modern medicine, people are living well into their eighties and

nineties, which is putting stress on all systems.

In 2006, people 65 years and older numbered 37.3 million, which represent-ed 12.4 percent of the U.S. population, or about one in eight Americans. By 2030, there will be about 71.5 million older people, about 20 percent of the popu-lation, reports the Administration on Aging (AOA). This indicates that more programs, particularly those that are gov-ernment-financed, along with access to other services will be in great need.

Carol Levine, director of the United Hospital Fund’s Families and Health Project was quoted in the October 2009 AARP bulletin as saying, “It’s difficult to find services because they’re scattered, they’re under different agencies [with] different eligibility standards. It’s not a consistent program and it’s hard for fam-ily caregivers to put this all together.”

Taking care of a loved one can prove to be a burden or a blessing, depending on the caregiver’s access to adequate resources. As Alice put it, “I’m glad to have an opportunity to convey both the horror that’s been part of my experience and the happiness in finding there are help options in New York City that I can get for my dad. It’s been a great lesson learned.”

S T A N D P O I N T

The Challenges of Aging for an Older Population

In the year 2030, the youngest members of the Baby Boomer generation will hit 65, making up nearly a quarter of the

country’s population, according to the U.S. Census Bureau. If current older Americans are a precursor of what is to come, they will experience health challenges such as dia-betes, dementia, depression and functional disability in record numbers.

But their huge presence may also open up specialized emergency rooms and criti-cal care units, encourage more research into the mysteries of the aging body and place a focus on specialized geriatric and end-of-life care.

Researchers and clinicians in the Division of Geriatric and Palliative Medicine at the University of Texas Medical School at Houston, have listed ten of the most com-mon challenges that we all face as we grow old.

FUNCTIONAL DECLINE. According to the U.S. Department of Agriculture, the body loses one percent of muscle mass a year beginning at age 45, which can result in sarcopenia as skeletal muscle is eventu-ally replaced with fat and the body becomes weaker.

Some research has linked protein defi-ciency with sarcopenia. For every week spent in the hospital, it takes an aging body a month to recover muscle strength with daily rehabilitation, says geriatrician Liliana Andrade, M.D., assistant professor of internal medicine at the UT Medical School at Houston. Exercise, including resistance and strength training, is abso-lutely essential for retaining muscle mass and strength.

“For balance, Tai Chi is good,” she said. “We also encourage patients to rent ‘sit and be fit’ videos that use hand and leg weights.” A study published recently in Diabetes Care, a journal of the American Diabetes Association, found that older adults, espe-cially women with Type 2 diabetes had a higher rate of skeletal muscle loss.

DEPRESSION. Considered by some to be as prevalent as the common cold among older adults, depression can be the result of

major life changes, including retirement, losing loved ones and loss of mobility and independence. It can show up differently in older people, says geriatrician Nasiya Ahmed, M.D., assistant professor of inter-nal medicine at the UT Medical School. “There’s not as much of a tendency toward tearfulness or feelings of hopelessness,” she said. “Instead they have vague somatic complaints, increased pain, not sleeping or eating well or general apathy.”

DISEASE. Chronic diseases associated with the aging process that can take a toll as one ages include high blood pressure, stroke, cardiovascular disease, osteoporo-sis, chronic obstructive pulmonary dis-ease, hypothyroidism, constipation, incon-tinence and arthritis. Preventive measures taken early, such as quitting smoking, eating healthy food and exercising, are all important steps toward a better quality of life. “Even quitting smoking at age 60 is better than not quitting at all,” Andrade says.

POLYPHARMACY. A term geriatri-cians are using for the number of prescrip-tion and over-the-counter medications that elderly people are taking in alarming num-bers is polypharmacy. “People go to five different doctors and none of the others know what is going on,” Dr. Ahmed said.

In some cases, seniors who wind up in the hospital may be prescribed a differ-ent medication for an existing condition such as high blood pressure because the hospital doesn’t stock the particular one they’ve been taking in the past. The patient returns home with a new prescription from the hospital physician and continues taking the other medication as well, which can be deadly.

“I’ve had patients come in who are tak-ing 20 different medications,” Dr. Andrade said. “A lot of them also take vitamins and herbal supplements that they don’t need and that can interfere with medications.” The solution, they say, is to have a written record of all prescriptions, supplements and vitamins that they can bring to their appointments and have a family practi-

tioner or geriatrician who can be the lead physician in managing their care.

FALLS. Low blood pressure, which can be a result of poorly managed hypertension or dehydration, can lead to dizziness. That dizziness, combined with a decreased abil-ity of the vascular system to compensate for changes in position such as standing up, is the largest cause of falls, clinicians say.

“So many patients have told me that they take blood pressure medication when they feel like it’s high instead of taking it as it is prescribed,” Dr. Ahmed said. “I ask them how they know it’s high and they give vague signs such as their nose tingles or their tremor worsening.” Taking medi-cations for sleep can also be dangerous. “Some take Benadryl to help them sleep and as people get older, that’s not such a good thing because it causes confusion and they can fall because they’re sleepy,” Andrade said.

ABUSE AND NEGLECT. These two problems, including self-neglect, will con-tinue to afflict older adults, said Carmel B. Dyer, M.D., professor and director of the geriatric and palliative medicine division at the UT Medical School and co-author of the book, “Elder Abuse Detection and Intervention.” Education programs are needed now to train physicians to recog-nize the signs of abuse and neglect.

In 20 years, 25 percent of the Amercians will be over 65, putting huge demands on health care and social services.


31

V I E W P O I N T

The Long GoodbyeTurning the Caregiving Experience into a Partnership

In 1998, I lost my father to his ten-year journey with Alzheimer’s disease. Before his passing, I had heard Alzheimer’s called “the long goodbye.” I know no better

description of the experience. With every change – losing his way home, no longer knowing my name, losing his ability to speak, and then, to walk – I watched the father I knew slip away. Each day, each moment, there was only something more to lose.

As Dad’s caregiver, I centered my attention on doing the title justice. It was all about me giving to him. I so strongly identi-fied with being a caregiver that I hadn’t really taken in the ways that he gave to me in return.

One particular morning with Dad showed me that gifts of care come in the most unexpected packages. I found him wild-eyed and rowdy, chanting nonsensical syllables. No longer using words, this was Dad’s new language of choice.

Unable to walk anymore, he writhed on his bed while he sang. Overwhelmed at first, I began to envy him as I watched him dance between the worlds. I no longer saw him as the victim of a debilitating disease, but rather, as an inspired mes-senger. He was entirely in the moment – full of unfettered playfulness and joy. How long had it been since I’d stopped to celebrate a moment so exuberantly? So I joined in and chanted with him, delighting in the sweetest connection I had ever shared with him. We were no longer caregiver and care receiver; we had become care partners.

What I gained was this: when care receivers experience that they have something to offer, and caregivers recognize the many gifts they gain, amazing shifts occur in the care dynamic.

Focusing on reciprocity naturally shifts the energy away from disabilities to abilities and enables us to build on what works right now, because it implies that everyone has some-thing to give. Care partnership implies a balance of care – an acknowledgement that opportunities to give as well as receive are abundant and experienced by everyone involved in the care relationship.

As we welcome the largest aging population ever, we need creative grassroots solutions for enhancing quality of life for older Americans and their care partners.

The most effective approaches will be those that include shifting cultural perspectives about aging and how we value what our elders have to offer. Being deeply known and having the opportunity to give as well as receive are vital antidotes to the loneliness, helplessness and boredom that impact the lives of so many frail elders.

Laura Beck is an Ithaca, N.Y., resident and project director of Eden at Home, an initiative of the Eden Alternative, an interna-tional non-profit committed to improving quality of life for elders and their care partners. To learn more about Eden at Home or the Eden Alternative, go to www.edenalt.org.

FINANCIAL EXPLOITATION. Vul-nerable elderly people can easily become victims of family members or caregivers. “We see cases where grown children have moved back in with them and are depend-ing on them financially. They use their resources, borrow the car, rely on them to baby sit, and it upsets the senior’s ability to function,” Dr. Ahmed said. “I had one patient in her early eighties whose leg had just been amputated and she was still babysitting her 11- and 12-year-old grand-children, who were taunting her.”

DEMENTIA. Alzheimer’s disease is the most common form of dementia, a gradual decline in a person’s mental functioning, and is the fifth leading cause of death for Americans over age 65, according to the National Center for Health Statistics. The Alzheimer’s Association reports that

Alzheimer’s disease and dementia triple health care costs for people over 65. But edu-cation about dementia and possible treat-ments including medications is lacking.

“There are now more medications that are helpful. They can’t cure it, but they can help,” Dr. Andrade said. “Unfortunately, a lot of people are in denial. I had a 78-year-old patient who I knew was suffering from dementia because of the way he was man-aging his medications and health. But his son got upset when I started talking about it and they left the room.”

CAREGIVER BURNOUT. As baby boomers age, many will also be taking care of their own aging parents. That brings caregiver burden, which can lead to a higher risk for depression and other stress-related illnesses. Dr. Ahmed says caregivers should solicit health resources, such as day

care for seniors, to help them shoulder the stress. They should take advantage of sup-port groups and ask social workers regu-larly about available community resources. Special units for acute care for the elderly can help make hospitalizations less stress-ful for the patient and family.

DEATH AND DYING. Individuals need to decide how they want to live out the end of their lives and how they want to die. Cultural and religious beliefs will impact these decisions and physicians will need to be sensitive to that, Dr. Ahmed says. As patients age, the physician begins to play a larger role in a patient’s life and strong physician-patient relationships will be important in determining a patient’s wishes. People should make those wishes known to family members and caregivers and put them in writing.

By Laura Beck

Being Polite. It’s Just That Simple.

T H E L A S T W O R DBY LOUIS J. GANIM

What’s happened to common decency, respect, courtesy and treating others with dignity?

You know what I’m talking about.What got me thinking about this? Well,

a cartoonist, believe it or not. Stephan Pastis, who is the creator of Pearls Before Swine, which isn’t necessarily the most dignified of comic strips itself. But it’s not the strip that got me on this line of thinking.

Pastis and nine of his fellow daily comic strip colleagues this past November went on a USO mission to the Middle East, and he wrote about the trip a few times in his blog, which I was reading one day.

He made the following comment in one entry about the men and women in uniform that he’d met during his travels through Kuwait and Iraq: “They were sin-cere and direct and respectful to a degree I have never experienced in my day-to-day life here.”

I thought how right he is. The people I come across in the military treat civilians with a great deal of respect. It’s always “sir” or “ma’am” when they address a civilian. These are people who are extremely proud of what they have chosen to do – stand between us and “them” and, if necessary, lay down their lives. (Pastis put it this way: “If something were to have posed a threat to any of us while we were there, I had no doubt they would have protected us before they protected themselves.”)

If anything, their choice to serve their country ought to give them a sense of superiority. But to the contrary, they are, almost to a man and woman, humble.

So this got me thinking about the rest of us.

Can we be more rude, impolite and unkind? Tell me about it.

I can start, of course, with some of those ranters on talk radio – hosts and callers alike – or with a certain member of Congress who calls out the President – “You lie!” – from the floor during the State of the Union.

OK – I don’t want to stumble into the realm of political correctness or trample on freedom of speech. After all, a friend of mine, who was then press secretary to New York’s governor, once remarked that, “The New York Post is the price we pay for freedom of the press.” Although some might say today it’s Fox News.

Yet, having said that, we’re at a pivotal point where the whole idea of respect for others seems fast on the wane.

I went on the Internet armed with Google and searched terms such as “respect,” “dignity” and “courtesy” to see what, if anything, others were saying.

I wish I could say there is a lot of moaning and gnashing of teeth over this issue, but there isn’t. I’m almost like the proverbial voice crying in the wilderness. But there are a few.

Take this blogger who calls himself “lendingtreeinc.” He said he’s a mortgage broker and he looked back fondly to the days when he developed “business rela-tionships and even friendships based on a foundation of courtesy and respect.” But now all he sees is “a new level of disre-spect and lack of courtesy” that he has a difficult time dealing with.

Another blogger named Medina was dismayed about a conversation she’d had (via Twitter, of course) about youth not respecting their elders. She related two separate accounts – one on the West Coast, the other on the East – of youths putting their feet up on bus seats while older adults stood “wobbling on old knees on the bus trying to hang on to cane and rail.”

Her blog post engendered a lot of discussion about children and how they are being raised today and how they are impolite and out of control. I thought, even if there’s some truth to that, what about the adults?

Medina’s take on adult behavior came through her relating a story about how she had to help an older woman through a thick crowd at the ballet who never would

have gotten to her seat otherwise because “most people were so wrapped up in what they wanted to do at that moment, they were oblivious to her.”

Have we become that self-centered and that self-absorbed?

I hope not. This might seem contradic-tory to everything else that’s been said here, but every single day I meet polite and kind strangers. Every day. Without exception.

Yet I do believe there is a sort of mob rule of impoliteness out there.

There isn’t a single societal problem, for example, that someone’s solution to it isn’t met with disdain or ridicule.

There’s a way to fix this, of course. We simply need to change the way we treat each other. We should be more like those men and women in uniform. Be polite.

Another blogger – Helen/H1202 – I came across put it this way: “Manners are a way to show respect for the human-ity of someone else. You don’t need to know them or like them. Just honor their humanity.”

To switch subjects a bit, Medina’s blog post was entitled “Elder Respect.” That in turn got me thinking about the ongoing worries about the future of Social Security and Medicare, and even the recent health care debate.

I recently saw a reference in Business Week to a silent movie by D.W. Griffith called, “What Shall We Do with Our Old?” It was made in 1911, long before social reformers achieved Social Security in 1935 and way long before 1964’s Medicare act.

The short film is about an elderly car-penter with an ailing wife who loses his job to a younger worker, and they quickly use up their scant savings.

If you’ve got an Internet connection, and chances are you do, you can find Griffith’s film on YouTube and watch it.

But I think you already know it doesn’t turn out well.

Enough said.


34 NEW HORIZONS | Winter 2010

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