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United Way of Northern New Jersey-HEALTH Success Stories

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Read about how our Health impact is helping the community.

Building Resiliency for Family Caregivers

Larry Abramsky lives daily what many family caregivers consider the yin and yang of providing unpaid caregiving to a loved one. There is the joy of feeling called to a higher purpose in life. And there is the drain of depression as he watches his parents decline.

Larry Abramsky & FamilyLarry put his career on hold five years ago to assume the daily caregiving of his two parents, both of whom have dementia. He took over tending to their bills and finances, which were in disarray, with debt mounting. He tackled all the legal documents they needed to have in place. He also moved in with his parents, now ages 93 and 87, coordinating their medications and care with various specialists. In addition, on his check list are the basics, like food shopping.

“I’m thankful I’m here,” says Larry, who also underwent open heart surgery the year his parents began their descent. “God kept me alive. It’s clear it was to do this. It’s a higher purpose.”

Early in his caregiving journey Larry recognized he needed help. He was referred to one of five local United Way Caregivers Coalitions in the region. Through the monthly meetings, resources, and education provided by the Coalition, Larry says he was able to access better levels of care for his parents and himself.

“I’m so glad United Way is here,” Larry says. “Everyone should know about the help that’s available through the United Way Caregivers Coalition so other people can access it. It’s a safe place and you get really crucial information.”

A Research-based Solutions Model

In addition to being introduced to medical, legal, financial, and social service providers through the Coalition, having access to a ready network of other caregivers who understand what he’s going through helps with the psychological tolls of caregiving. Even still, that wasn’t enough to quell the perpetual tightness in his chest and the overwhelming anxiety he felt daily.

“I was in bad shape, nothing motivated me and I was in pain all over,” Larry says. “I knew I needed to put myself in therapy. And when that wasn’t enough, I was prescribed anti-anxiety medication. It helped overnight.” 

Hearing anecdotally from caregivers like Larry about rising levels of depression and physical health problems, United Way set out to measure the severity of the impact on local caregivers.

United Way partnered with the Atlantic Health System’s Center for Population Health Sciences on The Health Status of Caregivers Study, which surveyed 1,000 northern New Jersey caregivers.

“At United Way, we believe that to develop solutions, first we need to document the extent of the problem,” says Carol DeGraw, United Way’s director of health initiatives. “What our research with Atlantic Health showed is that caregiving has an immediate, direct impact on an individual’s physical and mental health.”

Nearly one-quarter of local caregivers reported moderate to severe depression, according to the health study. In comparison, just 7 percent of the general population reports such alarming levels of depression.

Providing Hope and Respite

What the study also showed was social service supports, such as respite, can lessen these negative health effects of caregiving. And there is hope for caregivers, too. Caregivers reported high levels of resilience in the face of extreme stress.

Armed with the study’s concrete data, United Way is taking a two-pronged approach. First, an awareness campaign is underway to reach health and human service professionals through the Coalition and its 2,850 members across the region. Second, United Way is providing access to respite services, especially for those caregivers who are ALICE® (Asset Limited, Income Constrained, Employed), and cannot afford such resources on their own. 

This year, United Way will provide $230,000 to help ALICE caregivers and their families better manage their own physical and mental health struggles through expanded access to respite and other supports.

Larry recognizes that resiliency in himself. What keeps him going is seeing his mother smile and giggle, one of the odd, yet positive side effects of her dementia.

“When she’s giggly, she has a gentle childlike quality I never saw in her before,” Larry says. “She seems clearer then and looks at me like everything is fine, ok.”

Support United Way and help more than 1,500 caregivers get connected to information, education, resources, and services. Click here to learn more.

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A Community of Support for Family Caregivers

From the moment Kate Nordstrom’s alarm goes off at 6:30am until she heads to bed at 11:00pm she’s on the job – actually two jobs.

Kate & SonThere’s the job she trained for as a social worker, serving as a case manager at a nursing home and the other one that she was thrown into with no training or experience – caregiver to her now-23 year old son Paul, who is diagnosed with autism.

Like the six in 10 caregivers across the country who work and provide unpaid caregiving to a loved one, Kate lives a juggling act that is filled with stresses and strains, but also joys.

“Caregiving can be isolating,” Kate says. “While it can be rewarding, it’s lonely when you think you’re the only one. The United Way Caregivers Coalition lets you know you are not alone. It makes such a big difference.”

Kate is definitely not alone. There are an estimated 43.5 million adult caregivers in the country that AARP research shows save the health care system about $470 billion while shouldering immense personal responsibilities and costs.

Mom, Caregiver, and Employee

For years, Kate just saw herself as “mom.” It wasn’t until she attended her first United Way of Northern New Jersey Caregivers Coalition meeting that she realized her role for two decades was far more than a parent, she was also serving as an unpaid family caregiver.

“I went to the Coalition meeting with my work hat on and all of a sudden had this aha moment,” Kate says. “It changed my perspective. I have responsibilities that parents of typical children do not. And my role is never going to change; he is going to need care for the rest of his life.”

Caregiving duties are shared by all family members in Kate’s household. She and her husband John also involve their teenaged children. Both Kate and John work, so their children help fill in gaps of care for Paul in the afternoon in between an adult day program and when they can return home from work.

“Not working isn’t possible,” Kate says. “We live a fairly simple lifestyle, we don’t eat out a lot, we don’t take extravagant vacations. Just to pay taxes, just to pay your mortgage, to pay for food – it’s all expensive in New Jersey.”

Caregiving Weighs Heavily on ALICE

For some caregivers, who are also ALICE (Asset Limited, Income Constrained, Employed), they don’t have many choices – they cannot afford not to work nor can they afford outside help with their caregiving. The financial and personal demands of caregiving place even more outsized demands on already strained budgets, frayed emotions, and compromised physical well-being.

Kate considers herself lucky because her job offers her flexibility. The nature of her job is that she’s often fielding calls at all hours into evenings and weekends. So, her employer is understanding if she’s late because the van picking up Paul for his day program is late or if he has a crisis and she needs to run home.

“I’ve had friends who are caregivers who have had to stop working,” Kate says. “When my younger children move out I may have to reevaluate, can I still work?”

What Kate and some 1,200 caregivers across the region count on to help them navigate the ongoing challenges of caregiving is the Coalition and its members. From its meetings and educational conferences to Caregivers Night Out, which provides some respite, and the “Pathways for Caregivers” guide, which provides a roadmap of information and resources, the Coalition is a lifeline, Kate said.

“I never walk out of a meeting disappointed, plus there is a large online community when you can’t get out to a meeting,” Kate says. “United Way can tell me where to go to get the help I need.”

Support United Way and help more than 1,200 caregivers get connected to information, education, resources, and services. Click here to learn more.

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Fortune 500s and United Way Help Caregivers

Two Fortune Global 500 companies are recognizing the value of supporting employees who are also unpaid family caregivers – those who help loved ones of any age who are ill, frail or living Caregiving in workplacewith a disability or mental illness. Pharmaceutical giants Novartis and Sanofi established workplace supports for their employees playing this dual role, turning to United Way of Northern New Jersey Caregivers Coalition as an authority on the issue.

With six in 10 family caregivers holding down jobs, these companies understand the need for workplace support is critical, particularly for ALICE (Asset Limited, Income Constrained, Employed) and poverty-level caregivers – those living paycheck to paycheck who cannot afford to miss work.

Access to workplace resources and supports helps employees balance the juggling act they face daily with work and caregiving responsibilities colliding. An understanding work environment can help to reduce stress, improve health among caregivers, and have a positive financial impact as productivity increases and absenteeism lowers.

Employers can reap huge benefits, too. Businesses lose an estimated $33.6 billion annually in part to recruit and train replacements for employees who leave their jobs to care for a loved one, according to AARP research. Accommodating caregivers has a positive impact on retention efforts, allowing companies to save money. And it’s the right thing to do.

“Through the efforts of companies like Novartis and Sanofi, unpaid caregivers are getting much-needed assistance during a time when they often don’t know where to turn,” said Health Impact Area Director Carol DeGraw, who oversees the five Coalitions across the United Way of Northern New Jersey region. “Such companies are visionary and serve as a model in the business world.”

Establishing Onsite Support

As companies such as Novartis and Sanofi seek to support their caregiver employees, they’ve found the Coalition uniquely equipped to help them in this mission. Sanofi US recently tapped the Coalition when it wanted to establish CareGIVE, its caregiver employee resource group. The Coalition worked with Sanofi to hold a Caregivers Summit at its Bridgewater headquarters. The Summit served as a launching pad for raising awareness and letting caregiver employees know they had a supportive work environment.

Helping Sanofi deliver on its CareGIVE mission, the Coalition has also brought its Munch & Learn Program onsite, allowing employees to attend free monthly presentations on a range of essential caregiving topics in person or via webinar or access presentation materials through the company’s intranet. Surveyed webinar participants have responded overwhelmingly positive, and all employees throughout Sanofi’s nationwide footprint have the convenience of online access to a wealth of caregiver resources and information courtesy of the Coalition.

“We are acutely aware of the issues facing caregivers, both inside and outside our company’s walls,” said John Spinnato, Vice President, Corporate Social Responsibility, Sanofi North America. “As an expert resource, the United Way Caregivers Coalition helped us raise awareness and provide workplace supports for our employees who are caregivers.”

Providing Critical Resources

Novartis Pharmaceuticals Corporation brings critical resources directly to its employees at its U.S. Headquarters in East Hanover through its employee resource group, Caregivers Alliance for Resources, Education and Service (CARES). The Coalition has partnered with CARES to bring other top caregiving organizations to the company for a bi-annual employee resource fair, secure speakers for the group’s lunch ‘n learn series, and provide updates on available Coalition events and resources.  

“We are committed to developing a supportive community for current caregivers and to drawing upon the insights of our associates who are caregivers as we seek to better serve patients,” said Bob Spurr, Country Head & Vice President, Patient Access and Health Policy, Novartis Pharmaceuticals Corporation, who is the executive sponsor of CARES. “The United Way Caregivers Coalition has been an invaluable partner in helping Novartis to assist our employees who are caregivers. This benefits not only the employees, but those they look after as well, and ultimately has helped us to make a difference for patients.”

United Way connected more than 1,200 unpaid caregivers to information, education, resources, and services in the past year. Support United Way and help us improve the lives of unpaid caregivers. Click here to learn more.

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The Caregiver’s Lifeline

Caregivers consider it their lifeline. The formal name of the 200-page guide – a one-stop source of information, ideas, and support – is “Pathways for Caregivers.” Written by and for unpaid pathwaysstoryfamily caregivers, it gives mothers, fathers, spouses, friends, children, neighbors, and others hope that they are not alone as they navigate the complex system of ensuring quality care for a loved one.

Produced by the United Way Caregivers Coalition, “Pathways” provides a road map for learning about and surviving the role of being an unpaid caregiver. 

“Pathways is so innovative because it’s so much more than names and telephone numbers,” says Lucille Deutsch, a caregiver and Coalition member. “It became known as the Caregiver’s bible...it’s really a teaching tool. It takes caregivers by the hand and it walks them through the maze of resources.”

One Tool for all Caregiving Questions

Lucille knows firsthand how overwhelming it can be when caring for a loved one. She spent 15 years caring for her mother, who had Alzheimer’s disease – and she did it while working full time and raising a family. In addition, this was a time when neither the Coalition nor “Pathways” existed.

My caregiving experience was probably the most overwhelming, frustrating experience I can ever remember,” Lucille says. “Back then, there was no one-stop shop for accessing resources. There was no connection within the community.” Lucille spent countless hours searching online, combing through phone directories, and reaching out to agencies in search of useful information about caregiving and dementia. The experience affected Lucille so deeply that she decided to return to school and become a certified geriatric care manager.

Today, more than a decade into her new career, Lucille shares her expertise and “Pathways” with caregivers. She hands one out to each of her clients. 

“They are absolutely amazed that all this information can be contained in one resource,” Lucille says. “When I go back to see them, I find dog-eared pages.”

Award-winning Resource

Awarded the Caregiver Friendly Award by Today’s Caregiver Magazine, the guide covers a wide range of topics, from how to find evaluation services for a preschooler showing developmental delays to the importance of respite and self-care for those caring for a loved one with dementia. While “Pathways” was written to assist caregivers in the northern New Jersey region, its contents are applicable to caregivers throughout New Jersey and beyond. The guide contains separate sections on aging, disabilities, and mental health issues, as well as information on veterans’ services.

“All of these issues are addressed in this one comprehensive publication,” Lucille says. “No one else does this.”

Producing “Pathways” is just one of the ways in which the Coalition provides caregivers with better access to information while also offering them the support that they need. The Coalition brings together caregivers, medical professionals, social service agencies, businesses, and other community groups to support unpaid family caregivers throughout northern New Jersey. The Coalition is a community of support working together to help lessen the stress, isolation, and overwhelming demands caregivers experience in this role.

United Way has distributed more than 14,000 “Pathways for Caregivers” guides to help unpaid family caregivers navigate the caregiving process. In addition, there have been more than 1,000 hits on the online version of our regional guide. Click here to download “Pathways for Caregivers.”

Support United Way and help us improve the lives of family caregivers. Click here to learn more.

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We Give Caregivers Strength for Another Day

For Frank and his wife Marge, their world was upended when Marge was diagnosed with Early Onset Dementia at the age of 53. Their lives of busy careers, a thriving family, and a shared love Frank & Wifeof recreation, turned into one of consuming care, overwhelming sadness, and daily challenges.

Frank left the job he loved, retiring earlier than planned to provide full-time care. They moved from their beloved lake-side home to a more manageable condo in a retirement community. “There is no way to understand the depth of caregiving unless you are in it. And then it becomes totally consuming and isolating,” says Frank.

“There is a certain loneliness in caregiving for the woman you’ve loved for so long. She needs my help for everything,” he says. “I bathe her, dress her, put her jewelry and make-up on every day, color her hair, give her a manicure and pedicure and try to keep her as beautiful to others as she remains to me.”

Living a Life of Care

As Frank reveals: “Being a caregiver is 24-7, which is overwhelming. I get a ton of support from my amazing family, but even if you are not providing physical care every moment, you are monitoring medications, managing paperwork, scheduling appointments, and always thinking about what that person needs.”

Frank says that discovering United Way changed their lives. “The first time I walked into a United Way Caregivers Coalition meeting I immediately knew I was in the right place at the right time,” he says. “I instantly felt as if I could see a glimpse of light toward the end of the tunnel, and it was the first time I felt like I wasn’t alone.”

Supporting Family Caregivers

United Way Caregivers Coalition ensures unpaid family caregivers have access to information, education, resources, and services – in the community and in the workplace. We also help caregivers sustain their own health (physical, emotional, financial) despite the challenges of caregiving.

“Many people don’t identify themselves as caregivers and don’t realize the support that can help them,” says Robin Ennis, a coordinator for United Way Caregivers Coalition. “Family caregivers are isolated and often can’t take time for themselves.”

In New Jersey there are an estimated 1.7 million unpaid family caregivers* shouldering the responsibility of caring for a loved one, often without preparation or education, while juggling their own lives.

“Thanks to United Way, I’ve had access to all sorts of important information and I’ve met some incredible people who inspire and support me to keep marching on, no matter what. So, that’s all I can do is march on. And I promise, I will,” says Frank. “I know that tomorrow will be harder than today...and thankfully, United Way helps me face tomorrow.”

United Way connected more than 1,000 family caregivers to information, education, resources, and services in the past year. Support United Way and help us improve the lives of family caregivers. Click here to learn more.

* AARP Public Policy Institute, 2009.

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