Monday, July 16, 2012

The Caring Of A Caregiver


I have been someone's daughter, wife and mother, with all the attendant roles and obligations. Yet I never felt these more than when I became the caregiver for my parents.

During a Shabbat morning a few years ago, my synagogue had a special service as part of "Hillel's Call to Action," a response to issues important to its membership. This service provided an opportunity to acknowledge those who are caring for others. Caregivers' Shabbat highlighted this issue by having temple members recount poignant stories of evening calls, crisis intervention, long-distance guilt and local role reversal.

Rabbi Wes Gardenswartz described caregivers within the framework of Jewish tradition. Upholding the commandment "Honor thy mother and father," to care for your parents is love through loss. And to care for one's spouse, says the Talmud, is to move from the love of Passion to the love of the Ages. Add caring for children, siblings or special friends, and most of us will be caregivers.

The definition of a caregiver is one who takes on total responsibility for another person's wellbeing. The term is new, but not the enormous task. Coined in recent years by my generation's penchant for infusing the mundane with nuance and necessity, caregiving is now a calling with its own language, service providers, support networks and books.

There are three things that make the current caregivers different from those of past generations:

First, caregivers are older than before, but have younger families. I married at 29; my husband, 38. Our daughter was a young teen when our parents began to falter.

Second, times have changed. In 1971, when my husband's bubie (grandmother) needed something, his mother walked the four blocks to her house. We don't live that close anymore; having an elder living in our homes is an exception, not the rule.

Finally, our parents are living longer. But older age can sometimes lead to disease and distress not dealt with when people died earlier.

When I moved my 68-year-old father to Boston in the late 1990s, I became his sole advocate. It was a role I never thought would be mine, and one for which I was not prepared. Yet when he died eight years later, I knew I had done the job well, and the exhaustion yet relief I felt were the rewards of doing the right thing. Dad had the best housing, medical care and a good quality of life, even during his final days.

Often, I felt alone in my struggle to care for him. His complicated medical and emotional situations were unique, and not everyone could relate. Learning the ways of caregiving, I discovered there were people who had walked this road. Professionals helped me and there were empathetic friends with stories--the war stories that can be sad yet uplifting to another person in the same boat.

I used to work for an organization that supported children with special needs in Jewish educational settings. I saw parents struggling to care and advocate for their children, some with severe impairments. The love and devotion of these families to find the right school and services were inspiring. And an example of my last point.

Caregiving takes enormous energy, both emotional and physical. You need your full resources to accomplish your goal: your mind, to seek answers and make decisions; your body, to get the physical work done; and your heart, to love, honor and cherish those you hold dear.


A version of this article first appeared in The Jewish Advocate, www.thejewishadvocate.com, June 8, 2007.

Sunday, June 17, 2012

A Place At The Jewish Table

As Mary Ann Shoap prepares for Shabbat on Friday afternoons, there is much anticipation of the evening and the weekend to come. In the kitchen, she and her nine-year-old daughter Molly are enjoying their weekly routine of baking a special dessert. Watching closely is Daniel, Mary Ann’s seventeen-year-old disabled son. Having just arrived home from school, Daniel, in his wheelchair, is strategically placed near the kitchen island so the family can include him in their conversation. Daniel has spastic quadriparesis — a disability commonly known as cerebral palsy — caused by an accident at birth. While he is very alert and aware of his surroundings, he is unable to walk, speak, or eat. He cannot control his movements or his verbal outbursts, and he needs help with every aspect of daily life. His devoted and loving parents, siblings, and a daily caregiver are available to him every hour of every day. Yet, despite Daniel’s significant needs, the family never misses the opportunity to celebrate Shabbat, holidays, and family milestones.

As the sun begins to set, Mary Ann adds the finishing touches to the meal and readies Daniel’s dinner (Ensure, a nutritional supplement), which is provided through a feeding tube. Shabbat begins when the family enters the dining room and each person adds money to the tzedakah box. Mary Ann lights the candles while Molly says the prayer. Daniel’s face lights up because he knows “his” blessing is coming. After saying “gut Shabbos” to each other, the family listens as Lester and Daniel make kiddush. Lester says the prayer very slowly and Daniel mouths the words. With help from his mother, Daniel holds the silver kiddush cup in his hand, then takes a sip of wine and smiles; he knows it is Shabbat. They all say the prayer over the challah, and then Lester and Mary Ann bless their children. Jewish music, via a CD Daniel received as a bar mitzvah gift, brings a sense of calm and joy to the evening’s rituals. Mary Ann offers Daniel a taste of mashed potatoes or sauce, but mostly, he passes the time watching and smiling throughout the meal. Judaism — and especially Shabbat — are central to the family’s life.

A Jewish family in a Jewish home celebrating Shabbat. Here’s a difference: a green grated ramp and the “handicapped parking” signs outside their suburban Boston home. After dinner, Lester moves Daniel toward the elevator at the back of the kitchen. The elevator was added seven years ago when Daniel became too heavy to be carried up the stairs. They say goodnight, and begin their ascent to the second floor and the bedrooms, where Lester will put Daniel to bed.

Mary Ann and Lester maintain a “normal” life, she says, whenever possible. Except for their summer vacation, Daniel goes everywhere with the family: on college tours, to restaurants, and once, on a cruise. “Danny reminds us,” Mary Ann explains, “to celebrate life. Like other families, we’re parents and children. While we have had to work hard to reach this point, we have moved on; we’re not bitter.” The “normal” did take some time to achieve. The family has had many challenges along the way: the cost of Daniel’s medical needs and daily care; the constant worry for his wellbeing; the need to give time and care to Molly and their oldest child, Alex, who is now in college. But Mary Ann, a trained nurse, and Lester, a cardiologist, have been able to devote the lion’s share of their time, resources, and energy to creating a warm Jewish home.

Daniel’s bar mitzvah was the culmination of his participation in a program created by Gateways: Access to Jewish Education, which enables Jewish children with special needs to have a Jewish education, in both day schools and supplemental settings. Daniel’s parshah, Bamidbar, is the story of the first Jewish census, when everyone was asked to contribute to the community as a way to count each member. The psalmist wrote, “The stone that the builders rejected has become the chief cornerstone.” (chap.18:22) For the Shoap family, Shabbat and their children — all of their children — have become the center and the strength of their lives.

I was humbled when asked to write this for Sh'ma when I was the communications and development coordinator for Gateways: Access to Jewish Education in Newton, MA. (www.jgateways.org) I am grateful to Mary Ann Shoap for collaborating on this article and for expressing her appreciation for the opportunity by saying, “Who knows whom it may reach and influence.”

This article was originally published in Sh'ma Magazine, June 2009. http://www.shmadigital.com/shma/200906?pg=16#pg16 To subscribe: 877-568-SHMA www.shma.com

Monday, April 9, 2012

My Favorite Things


Each year, as I begin to prepare for Passover by taking out the boxes of dishes, utensils and assorted necessities from the basement cabinets, I am reminded of seders past and relatives long gone. The joy and comfort I feel as I unwrap these plates, pots, graters and ceremonial items (many of which once belonged to family members) eases the sense of loss that accompanies them. Indeed, Passover is often a time of family challenge: ailing elders, children stressed by exams, transitions for the rest of us. Those making seders are equally burdened by the fast approaching deadline. I am both excited and nervous about making this magic happen each year.

Yet we do it, year after year. Why? Because it is part of who and what we are. A people, changing with the times, growing in new ways, creating traditions unique to each of us.

I love the community I have created by having seders every year. The core group always returns, supplemented each year by newcomers. We do old and new readings, eat the same foods brightened by new recipes, and create new memories by singing favorite songs.

At the Jewish day school where I work, we have created a vibrant school community by joining our institutional memories with the world in which we live. For instance, our students are learning via new technology their ABCs and Aleph Bet, biology and bible study, creative writing and how to make charoset. And its creation is assured by the devoted staff, faculty and parents, dedicated volunteers and generous donors who give of their time and resources to ensure that these youngsters grow into the adults they are meant to be.

Thank you for being a part of my community. May you find joy in your holiday celebrations with families and friends at this very special time of year.

Wednesday, November 23, 2011

My Mother's Memory Became Mine

I grew up in Florida and my mother spoke often about the summer she spent at Camp Laurelwood. Mom was raised in 1930s New Haven, the second child of a family deeply affected by the Great Depression. One year, she received a scholarship to go to camp. I don’t know if the gift came from Laurelwood directly, New Haven’s Jewish Federation or its JCC, but no one ever appreciated this largesse as much as my mother.

Her fond memories of the fun she had that one and only summer away from home fueled her desire to have me go, and she made it happen in the summer of 1967, the year my father decided to move us back to the Northeast. I was ten and a half years old, an only child and extremely shy. Mom thought it would be good for me to be away while they set up our new home in New York.

In those days, camp began around the Fourth of July and ended in late August, a full eight weeks. I arrived that first day with one trunk and two duffle bags, absolutely terrified. I didn’t know anyone and I was clearly different from the other girls: they’d already been at camp for a few years; they were mostly from area communities; they had nicer clothes and wore makeup! I was THE NEW GIRL.

My parents always remembered the sentence with which my first letter began: “If you could get your money back!!” Apparently, I was unhappy and ready to leave, but aware that our family of modest means couldn’t afford to be frivolous (I think camp cost $100 a week back then). Somehow, over the next three weeks, the magic of camp transformed me and, on the final day, I joined the chorus of sad campers. My mother and father were astonished as they watched me tearfully hug my counselors, Irma, the head counselor, Belle Schiffman, and other adults and kids. On our way out of camp, I pronounced with certainty, “Next year, I’m going for two months!”

I came to camp three more summers, each for the full session, and they are melded in my mind into a glorious panorama of milestone events. One in particular stands out: the summer of 1969, when on the afternoon of July 21st, campers and staff crowded into the dining hall, gathering around a very small black and white television set to watch the first man walk on the moon. We all remember important national moments; for me, a key one is where I was when I first heard, “One small step for man, one giant step for mankind.”

Then there was the year we lost elderly Mr. Gordon, the long-time director who lived with his wife in a cottage and daily drove a golf cart to survey our activities. He’d been involved at the camp since my mother’s days. I didn’t really understand at the time, but there was a palpable deep sadness for days amongst the staff that I remember with respect.

Less dramatic but equally special times over four summers included:

• Becoming a star on the trampoline which for this nonathletic girl was a definite sport. Decades later, I shared a trampoline moment on Cape Cod with my young daughter, who laughed as I painfully tried to recreate my moves;

• Arts and crafts on the afternoons of socials, when girls were allowed to publicly wear their hair in rollers. Ours were often empty orange juice cans, four placed strategically atop our heads resembling helicopter blades;

• A first kiss at that social;

• The rainy days in the library;

• Color war, remembering the lyrics we sang to “Somewhere” (There’s a place for us, Laurelwood’s the place for us…);

• The joy of discovering that Wonder Bread, which I didn’t get at home, made a great mayonnaise, tomato and lettuce sandwich on days I didn’t like the menu.

When my daughter was of age, I chose to send her to the same camp in northern New England her school friends attended…with the same duffle bags I had used 30 years earlier. She went for five years but never loved camp as much as I did and, in hindsight, I wish I had let her take the chance on Laurelwood. I wonder if it was that initial need to make it my own that brought me so much satisfaction.

The Jewish experience of Camp Laurelwood has remained with me the most, instilled in a way that still sustains me. I believe it also affected my mother because while she didn’t have much of a Jewish life at home, being at Laurelwood made her appreciate her Jewish heritage. She instinctively knew I would benefit by going to Hebrew school, Israel, and of course, Jewish camp. I will always remember the wonderful Friday night dinners with amazing challah and everyone dressed in our best whites. We would be singing together but I especially loved when Belle lit the candles and sometimes sang the Yiddish song, Bei Mir Bistu Shein (To Me You're Beautiful). She was my favorite “elder” at camp. The Jewish girl in me will be forever grateful for those summers when Jewish song, ceremony and values were infused into our days and nights. That first summer, 1967, began one month after the Six Day War and looking back, I suspect a sense of pride permeated everything we did.

My one sadness is that I didn’t keep in touch with camp friends and I envy today’s campers with email, Skype and Facebook. When I went to college in Boston, I did meet some, including my cute waiter I’d had a crush on for years!

Today, I work in my Jewish community, surrounded by young children and their parents. While day schools nourish our next generation during the school year, how lucky we are to have Jewish camps continue this sacred work throughout the summer. Like my mother before me, I will never forget what Camp Laurelwood did for me.

A version of this post appears in the CLW 75th anniversary tribute book, Fun, Friends, Forever,  published by Camp Laurelwood, 2012. For more information about the book, and the 75th Gala on August 25th at CLW, go to http://www.camplaurelwood.org/. All proceeds from both the book and the gala benefit the CLW Scholarship Fund. Please give the gift of a summer at CLW to the next generation.

Monday, November 21, 2011

Remembering the Good in Ourselves

Today, my community suffered the loss of three special individuals, and I am struck by the similarities in their lives, which makes their shared day of death an interesting coincidence.

There is Joe, 104 when he died, who came to temple every Shabbat morning with a list in hand, a collection of names he rose to recite in prayerful hope for their return to good health.

Ina, a strong woman who made her mark in so many ways: ritual committee trailblazer, sisterhood mentor, devoted wife whose husband preceeded her in the same slow, debilitating illness that took her life.

And Bernie, who forever changed the work of Jewish communal service so that it reflects the values and respect our global community has for those who engage in tikkun olam, repairing the world.

Joe, Ina, and Bernie - I didn't know them well - yet my life is better because of their efforts.

I watched Joe rise each week and purposefully walk to where our rabbi would acknowledge his presence and his appeal for Divine intervention. His ritual, his consistent mission, always made me think of someone I knew who might be helped by a prayer. He made me a better Jew.

Ina was a force - an intelligent, Ivy-educated woman who knew her mind and stuck to it. She welcomed me into her temple, her home, her friendship with care, support, and opinion. You knew where she stood on everything...and I respected her for that. She taught me about ritual, devotion and love. We could use more teachers like Ina.

I met Bernie once, a long time before I began to work in the Jewish community. He was a mensch's mensch. As a professor, he made a difference for his students. As the founding director of the Hornstein Program at Brandeis University, he created an institution that forges great organizational leaders. In creating BALI, the adult learning program at the university, he engaged the broadest of communities.

The Jewish community, my community, has benefitted by these determined, mindful souls. We are forever changed by their insistence on doing good. Let us reflect on the good they did, and hope that our good works will reflect back onto their lives.

May their memories be for a blessing.

Thursday, May 5, 2011

The Power of One


In a whirlwind trip, women discover the power of one
Heart to Heart shows their dollars at work



When you enter the hospital, you are greeted by a huge, colorful mural. There are a rainbow and a dancing Winnie the Pooh, balloons in hand, one of which is inscribed with “Baruchim Habaim, Welcome Friends.” I knew then I would not leave without shedding tears.

This was the third of five days I spent in Israel, and I was beginning to feel the rush of exhaustion and exhilaration one gets after jet lag sets in. Thrilled to be traveling with two of my closest friends from Boston and 85 other American women, I was on a mission sponsored by the Jewish Federations of North America’s (JFNA) Women’s Philanthropy division.

We had come to Be’er Sheva, to the Soroka Hospital for Children, to meet the teachers and the students of the World Ort Kav Or program, which helps ill children continue their studies during a prolonged hospital stay. After hearing from the hospital director and educational coordinator, we were divided into small groups to visit the wards and view the program in action.

I was immediately moved by the children and their families – Israelis in bright clothing and Arabs in traditional dress – who were sitting together in small rooms or working in the cheerful classrooms. My eyes fixed upon a teenage boy, wearing a hospital gown, and sitting with an instructor at a small desk. On closer look, I saw that the youngster was working on complicated math problems and he had payus wrapped behind his ears.

Realizing I was staring, I turned to join my companions and became conscious of how out of place we must have seemed. A strong sense of obligation washed over me: It was incumbent upon us to tiptoe lightly through this reality of other people’s lives.

And then out of the corner of my eye, I saw her. A woman in her late 30s sat off to the side, on a folding chair placed against the gray tile wall. She was quietly watching us while slowly sipping from a paper cup. It was apparent from the way she was dressed – long skirt and sleeves, beret covering her hair – that she was an observant Jew. Thousands of miles away from home, I felt an instant bond with this stranger: She was a mother.

She looked up from her cup, and I took the opportunity to say, “Shalom.”
“Shalom,” she replied.

“Medaberet Ivrit? Do you speak English?”

“Yes.”

With a wave of her hand, she asked who we were. Choosing my words carefully, I explained that we were Americans, members of an organization that supported the hospital school. I asked if the young man studying math was her son. She said yes, and that he had been there a week with another yet to go. I did not ask why he was there; she did not say. But at that moment, I was no longer a visitor; she was no longer a Sabra. We were sharing the worry for her son. I looked at her as my eyes began to water and said, “I wish him a Refuah Sheleimah, a return to good health.” She too began to weep and said, “Thank you, and thank everyone for their help here.” I said goodbye and moved on, touched by this private encounter.

The Heart to Heart (H2H) mission is an invitation to all women, at any stage of their lives, to take the leap and travel alone, and together, to our homeland. Participants include young mothers, empty nesters, career women and retired teachers; seasoned federation volunteers and professionals and first-time givers; mothers with adult daughters, real sisters – and best friends who wish they were. The most moving traveler this year was the survivor of the Shoah, who came with her daughter and grandson’s wife, a Jew by choice. Israel beckons you, everyone, to fulfill the mitzvah to be there.

Begun in 2010, this whirlwind tour was designed to show donors “where the dollars go.” It is five days of fast-paced, intensive traveling, geared to introducing us to Jewish Agency and Joint Distribution Committee programs, funded in part by annual federation gifts. This was H2H’s second year, and I was a returning participant. Many of my fellow travelers were Lions of Judah, those who give at the highest levels; dozens of others were like me, women who work for community agencies, were new to the federation family or had never been to Israel. We came to be inspired by the energy and commitment of our local and national federations, 157 strong, who make a difference every day in the lives of Israel’s people.

That initial trip was my first to Israel in 37 years. After a busy year, it was the small ad on the Combined Jewish Philanthropy Web site that beckoned. I was increasingly embarrassed to work in the Jewish community and say I had not been to Israel since the age of 15, so now was the time. I haven’t been the same since.

What is it about Israel that moves one in such a powerful way? There is a force, a sense of purpose. Israel has such impossible dilemmas, yet you witness innovative solutions, many funded by American contributions. For instance, juvenile delinquency has recently been addressed with education and business programs that engage young people by boosting their sense of self-worth. We saw those initiatives, as well as others for new immigrant young adults, Ethiopian children and families at risk.

The distinctive nature of the H2H trip is the opportunity for each woman to understand the power of one: I am a philanthropist. Whether you give $500, the minimum gift to participate on the trip, or $5,000, the initial Lion of Judah commitment, a woman’s gift makes an impact, first on her local community, such as for Jewish education, and then on, say, an Ethiopian youngster in the Carmel valley or an elderly woman in Jerusalem.

At the day school where I work, learning about Israel and its people, language and culture is integral to the curriculum. After I returned, I found myself drifting toward the classrooms whenever our Hebrew teachers were speaking. It was a clarion call, a wonderful reprisal of all I had encountered the previous week.

Why do I go back? For five carefully orchestrated, intensely moving 14-hour days, I am incredibly lucky to be offered a chance to see through the eyes of these extraordinary women. A view of the power of what we can do, alone and together. I will go again, with an open mind and a joyful heart, because to be in Israel is to be transformed.

First published in Boston's The Jewish Advocate, May 5, 2011
To subscribe, www.thejewishadvocate.com

Friday, October 15, 2010

What a difference a (small) donor can make

Take a moment to imagine the birth of your favorite not-for-profit organization.

Perhaps you are concerned about Jewish continuity so you support a Jewish day school. Or your cause is care for the elderly. Many families are devoted to their synagogue or youth group.

Some of our beloved local agencies are decades old with dozens of employees and a myriad of programming. But they didn’t start out that way. How did they grow? Every agency begins in a similar manner: a motivated individual or group of passionate players decide that they can make a difference. They create a model of what they wish to accomplish and begin to collect like-minded individuals to help them.

Of course, the next step is how shall they fund their endeavors? As they seek founding support, they realize they have no track record, only a noble mission. What will encourage donations and why should anyone give to an unknown cause? It takes chutzpah to ask and faith to give. And that’s where the “annual fund” makes the difference.

A charity’s annual fund is the engine that drives its daily operation. And everyone can participate in the annual fund; no gift is too small. Often it is the small donations that make the difference in the early years of an organization. Sometimes it’s grants called “seed money,” the lifeblood of new organizations and a way for a donor to help who could otherwise not participate in philanthropy. Here is the perfect way to be A PART of your community, not apart.

We are all mesmerized and incredibly grateful when someone donates a major gift to build a needed building or fund an important initiative, and certainly, these donors make a dynamic difference in our lives.

But let’s suppose that your favorite group needs computers for their students, a van to transport their elderly clients, or support for an innovative program for new parents. In the early years of a non-profit, the difference between success and failure can sometimes be measured by whether this one program can find support. A small grant to a new organization is a catalyst for change.

Ask someone you know who works for a social service organization: what’s on her wish list? Some might tell you grandiose visions of programs and parallel services. But I believe most would say they need something now which directly affects their constituency and your donation, whatever the amount, can help them get it.

That’s something to think about the next time you receive a request for a contribution. While those who are blessed to give sustaining philanthropy are some of the pillars of our community, every donor matters. It takes individual bricks to hold up the pillars. Your donation will sow the seeds of the future.

It is said that people give not because they have money, but because they have heart. When a cause moves your heart, give what you can – and know that your thoughtfulness and generosity will always be appreciated.

A version of this post was published in www.thejewishadvocate.com in Fall 2011.