Category Archives for Caregivers

Rhode Island Families Can Benefit from Expanding State’s TDI Program

Published in Pawtucket Times, May 17, 2013

In the 2012 legislative session, it was very easy for Pawtucket Rep. Elaine A. Coderre to say yes to Sen. Rhoda E. Perry, when the Providence lawmaker came looking for a House sponsor of S 2734. Perry’s legislative proposal would amend the State’s existing Temporary Disability Insurance (TDI) program to include coverage for caregivers who care for loved ones during a health care emergency or to take time off to bond with a child.

Years before, unexpectedly being pushed into the role of caregiver would bring Coderre to become the primary sponsor of H 7862, the companion bill to S 2734. To the disappointment of the Pawtucket lawmaker and her Senate colleague, their legislative proposal would be held for further study, effectively killing it.
Understanding a Caregivers Needs

In 1997, taking care of her dying mother became time-consuming for Coderre, a part-time lawmaker who served full-time as Executive Director of the Emergency Shelter of Pawtucket. Before the onset of the terminal illness, Coderre’s 78-year-old mother had lived independently on the second floor of her daughter’s three floor tenement.

With her elderly mother quickly losing her ability to live independently, being diagnosed with fourth stage Alzheimer’s disease and fourth stage colon cancer, the fifty-year old Coderre instantly became a very stressed caregiver

For over ten months, Coderre skillfully juggled the responsibilities of working two very challenging jobs, meeting family demands, and becoming the primary caregiver to her frail mother. To provide care seven days a week, 24 hours a day, Coderre would rely on her husband, three adult children, sister and her husband, to assist.

“It was a scheduling nightmare, remembered Coderre, referring to the complexity of making sure each family member was inked in the schedule and were notified when to report for duty. “We were committed to making my mother, in her final days, feel safe, secure and to have a quality of life,” she said, noting that her family did work well together, making the care giving schedule work

Looking back, Coderre considers herself extremely fortunate because she had her immediate family and was able to hire a homemaker, to provide more of the physical care, from 9:00 a.m. to 4:00 p.m.
Supporting Temporary Caregiver Insurance

But, Coderre realized from this experience and calls from constituents that not everyone has a large network of family and friends, or adequate finances to take care of a very sick loved one, even to know where to find caregiver support services. Becoming a care giver to a frail family member, an experience that many Rhode Islanders will face during their adult life, pushed Coderre to again become the primary sponsor of House legislation to create a Temporary Caregiver Insurance Program (TCIP), for the second time around.

During the 2013 legislative session, Coderre has joined Sen. Gayle Goldin, who represents areas in Providence’s Eastside, to reintroduce companion measures in the Rhode Island General Assembly (H 5889 and S 231) to create a TCIP. The legislative proposal, modified to address opponent concerns from the last session over the length of the benefit, would expand TDI to employees who must take time out of work to care for a family member or bond with a new child in their home.

If enacted, employees would be eligible to receive up to 8 weeks of replacement income while providing care for a seriously ill family member or new child. The law would provide employees with job security by allowing them to return to work when their caregiver responsibilities have concluded. The average weekly benefit for an employee would be $408.

Like Coderre, Goldin, a first-term Senator, had her own life experience as a caregiver. Over the years she, as a family advocate, she has also talked with many parents who told her of their own children’s health needs and financial and emotional stress it created and how important this program was for them.

“Paid family leave is a cost-effective way to give employees the time to balance family and work responsibilities without jeopardizing their economic security,” said Goldin.

In the early 2000s, Goldin’s interest in research on TCIPs was piqued when the program was implemented in California. Last year, as a member of the Providence-based Women’s Fund of Rhode Island’s Policy Institute, she brought this knowledge to the table when working with seven women to get legislation introduced on Smith Hill.

At that time, out of five state’s nationwide that had TDI, like Rhode Island, identified two (California and New Jersey) allowed the program to be used by caregivers, not just those who are suffering the illness or injury themselves.

The research findings gathered from the Women’s Fund of Rhode Island’s Policy Institute would give ammunition to Sen. Perry and Coderre to push for the TDI program expansion in 2012. When Goldin took over Perry’s Senatorial seat when the long-time Providence Senator retired, she picked up the TDI cause, bringing Coderre back to the plate this legislative session, to assist her in the House.
Advocates Rally to Support

On April 11, eleven groups, including AARP Rhode
Island, the Senior Agenda coalition, Woman’s Fund of Rhode Island, the Economic Progress Institute, Rhode Island Kids Count, and the Rhode Island SEIU State Council, came before the House Finance Committee, to push for passage of H 5889.

Dr. Marcia Conè, Ph.D., CEO, of the Woman’s Fund of Rhode Island, told lawmakers that the TCIP is just an updated extension of the current TDI program that “best addresses the new health and lifestyle changes of today’s society, giving “everyone the flexibility of needed to balance the new realities of family and work responsibilities.”

To put the brakes to a “brain drain” out of the Ocean State, due to higher salaries available in bordering states, Dr. Conè stressed that H 5889 would offer what all employees need, time off to care of family business in a crisis. “The prestige of having the most family friendly work environment in New England is a very strong incentive for families to stay in the state to make Rhode Island their home,” she told the panel.

In her testimony, Executive Director Kate Brewster, of The Economic Progress Institute, stated that the state’s Parental and Family Medical Leave Act of 1987, and the Federal Family Medical Leave Act of 1993, give employees up to 13 weeks of “unpaid leave” to care for a family member or new child. “These laws protect employees’ jobs, but not their wages,” she said, observing that low-income Rhode Islanders can not afford to take unpaid time off from work, they need their wages.

Countering Brewster’s comments, submitted testimony by R. Kelly Sheridan, representing The Greater Providence Chamber of Commerce, warned that H 5889 would expand the State’s existing TDI program to allow employees time off to care for family members, when most states do not even have a TDI system. This expansion “would make Rhode Island’s business climate an outlier compared to our neighboring states and would send the wrong message to the business community regarding improving the business climate in our state,” he said.

While Matt Weldon, Assistant Director, of the State’s Department of Labor and Training, took no position on the TCIP legislative proposal, he came to answer questions. Weldon noted that there could be a .2 increase to the rate an employee is mandated to pay into TDI. Currently, the state program takes 1.2% of the first $61,400 out of an employee’s paycheck.

Maureen Maigret, Policy Consultant for the Senior Agenda Coalition of Rhode Island, told the House panel that nobody can predict when a family crisis will come, specifically “the critical illness of a child or spouse, an older person’s fall and subsequent need for care.”

Maigret estimated, for just pennies per week paid by workers – the cost of a cup of coffee — passage of H 5889, would allow workers to take temporary leave to deal with sudden critical family needs and still have some income.

With the Rhode Island General Assembly gearing up to finish the people’s legislative business by the middle of June, We Care for Rhode Island (WCRI), a grass roots coalition consisting of 32 organizations, including small business owners, workers, policy centers and family and health care advocates, was established at the end of April, to push for the passage of a Rhode Island TCIP.

Last Saturday, visiting local retail stores on Hope Street, Steve Gerencser, of WCRI, passed out literature, calling on owners to support his group’s attempts to create a TCIP in the Ocean State. “It can be a boon for businesses,” he says, citing a 2011 research study detailed on his Legislative Fact Sheet, supporting the passage of H 5889 and S 231. Gerencser notes that the findings estimate that program would save employers $89 million a year by improving employee retention and reducing turnover costs.

Goldin agrees with WCRI’s assessment a TCIP’s benefit to businesses. Moreover, she claims that there is really no impact on the State’s budget, to start up this new program. “It’s revenue-neutral and is solely funded by the employee, business owners and taxpayers do not contribute.”

With a negligible expense to implement, with no cost to the taxpayer or even the business community, it’s penny-wise and pound foolish for state lawmakers to not create a Temporary Care Giver Insurance Program, to financially assist Rhode Island employees when they take off time to help seriously ill family members or to care for newly adopted child.

Sound public policy, like this legislative proposal, can only send a clear message across the United States, that the Ocean State is finally taking steps to become more family-friendly, a great way to competitively attract large corporations and even smaller businesses into our borders.

Herb Weiss, LRI ’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.

Tale of Two Caregivers

Published October 5, 2012, Pawtucket Times

           Being a caregiver to an older parent while raising children has now become the new rite of passage for aging baby boomers who, by the millions, are moving into their middle age years and beyond. Often called the sandwich generation for having care responsibilities at both ends of the age spectrum, these individuals become emotionally challenged, physically drained in their attempts to cope and juggle a multitude of tasks.

             According to National Alliance for Caregiving and AARP, more than 65 million persons, 29% of the nation’s population, provide care for a chronically ill, disabled, older family member or relative during any given year. The caregiver spends an average of 20 hours per week providing care for their loved ones.

 Taking on New Care giving Responsibilities

           Over seven years ago, Catherine Taylor, 51, the State’s Director of the Department of Elderly Affairs, and her husband, Rob, a practicing attorney, found themselves thrust into this new very demanding role with huge responsibilities. Like many others, the couple took on the demanding role of being caregivers of an elderly parent while juggling the intense domestic demands of taking care of four children, whose ages ranged from 3 years old to age 15.

           The Providence couple was now sharing the care of a very independent 83-year-old widow, who at that time resided in her home in Connecticut, one that she had designed. The older woman still continued to practice as an architect until her health began to rapidly steep decline.    

          In 1995, “We moved her back to Rhode Island six months before she died when she became too infirm to live independently in her home,” remembered Catherine.  

        Catherine wanted her mother-in-law to move in with her family, “but she was just too independent for that,” she said.  Her husband’s mother would ultimately choose to live out her final days in an apartment at a senior living facility on Providence’s Eastside, near the Taylor’s home. 

         As is the case with many caregivers who relocated their loved ones to live close by, packing, scheduling the move, and getting the Connecticut house ready for sale became the first chore of being a caregiver, notes Catherine.   

         According to Catherine, becoming a caregiver while working and raising a large family was incredibly hectic. “Many times we had to be in two or three places at one time,” each day.  Catherine adjusted her work schedule to help her mother-in-law with activities of daily living such as dressing, assisting in going to the bathroom, and feeding, take her to the emergency room or stay with her in the hospital, while wanting to be at home cooking her family dinner, and helping her children do their homework.

 Tips on Coping for Caregivers

            The couple juggled their roles as parents, caregivers and employees as best they could.  For instance, “our oldest child would be charged with watching his younger siblings”, Catherine says.  When visiting her mother-in-law to cook and assist her with eating, Catherine brought the youngest along to the senior living facility, and placed him in a portable playpen next to the kitchen table. Catherine, her husband and his sister, would divvy up cooking chores, each one take responsibility for making either breakfast, lunch or dinner.

           Supplemental care, provided by a home health aide, was especially needed when the aging baby boomer couple had to be at work.   

          While taxing for the entire family, care giving did have a positive impact on Catherine’s children.  “It really impressed on them how our family pulled together,” she said, noting “that it made them feel useful because they had specific jobs to perform to keep the family running.”    

           When asked if she got enough respite care for herself, Catherine quipped, “I never get enough!”  She added, “For us being part of a large nuclear family, also having a large extended family, we were able to trade off with each other.  But a lot of people don’t have that option,” she notes.  One of the hardest things about being a primary caregiver is how alone you can feel, Catherine said. “You’re living a different life from most other people.  You watch other families make snap decisions to go to the movies, and just hop in their car and go.  For you to do the same thing, the logistics tend to be like the invasion of Normandy.  You just have to go through so much organizing to have simple pleasures that other people don’t think twice about”.

          “Most family caregivers look like they are doing fine and think they are doing fine, but family, friends and neighbors, and sometimes community agencies, need to check in and give them a break so they care recharge their batteries.”

          Catherine suggests that caregivers maintain their relationships with friends and colleagues as hard as that is to do so they will look in on you, stop by for coffee, bring you dinner and help recharge you.  “This will allow you to keep doing your care giving job with love.”

 Double Duty as a Caregiver

          Sixty-four-year-old, Kathy Heren, Rhode Island’s Long-Term Care Ombudsman, a licensed practical nurse and caregiver, and her husband, John, 63, a chef, slipped into the care giving in the mid-1990s, watching out for two elder family members at the same time, a 72-year- old mother and her 78-year-old uncle.

          Both frail relatives (one had dementia and the other a heart condition) lived independently in their homes located in East Providence and on the Eastside. “Being Irish, they were both very stubborn in accepting assistance,” the aging advocate remembered. While professionally helping others cope with care giving and long-term care issues, Rhode Island’s Ombudsman had to carve out time to personally perform chores for her two frail family members. Chores included shopping, paying bills, and cleaning their houses.   Scheduling and transportation to doctor appointments and med management took additional time away from her very demanding job and family duties.

            When dealing with her Mother’s finances became just too difficult, Kathy, along with her sister, filed for guardianship.  “If you realize that there are some things you just can’t control, then seek outside services or assistance,” she recommended.  

           “Depending on personality of the person you are taking care of you may have to just step away from being a caregiver, if it impacts on your health,” she says.  “It may become the right time to turn to a nursing home or home care services, to take care of your frail family member.”

           “Make sure you turn to respite care if needed because it is always available”, Kathy suggests.  “You need to know when to seek out this assistance and go on a trip to recharge your batteries. When taking care of your loved one, do not forget your own health, family, or nutrition,” she says. .

 Seeking Respite Care Programs

             Rhode Island will receive $250,000 under the federal Lifespan Respite Care Act to support families caring for aging or disabled individuals with special needs, increasing access to short-term, or respite care. This relief offers family members temporary breaks from the daily routine and stress of providing care to loved ones with special needs.

             You can get information about respite care programs and resources available to care givers by calling by calling the Rhode Island Department of Human Services, Division of Elderly Affairs at (401) 462-3000, or you can go to www.dea.ri.gov. TTY users can call (401) 462-0740.

             The Rhode Island State Ombudsman, at the Alliance for Better Long-Term Care, monitors the quality of the Rhode Island’s nursing homes, assisted living facilities, home health agencies and hospice services, and address issues of elder abuse, guardianship, neglect and financial exploitation.  For more information, call  (401)785-3340.

             Herb Weiss is a Pawtucket-based freelance writer covering aging, health care and medical issues.

 

Caregivers Must Not Forget Their Own Needs

Published June 8, 2012, Pawtucket Times

           It seems that every where I turn these days, friends, and business colleagues, are being thrust into care giving roles for older family members or spouses.  In today’s hectic world, aging baby boomers and seniors who are now taking on this late-life role can find this new task very demanding and stressful.

            According to the National Alliance for Caregiving and AARP, most aging baby boomers will become informal caregivers at some time during their lives. During any given year, there are more than 65 million Americans (29% of the nation’s population) who provide unpaid care for a chronically ill, disabled, or older family member or relative during any given year.  The caregiver spends an average of 20 hours per week providing care for their loved ones.

            Statistics paint a very detailed picture of the typical family caregiver.  She is a 49-year old, married female who is employed and cares for her 69-year old widowed mother who does not live with her.  Over 66 percent of the nation’s caregivers are women.  More than 37 percent have children or grandchildren 18-years or younger living with them.

The Importance of Taking Care of Yourself

            Connie Goldman, award winning radio producer and reporter whose books have given her readers insights, inspiration, and motivation for personal growth in their mid-life and beyond, sees continuing need for support and services for middle-aged caregivers. 

            Goldman, who authored The Gifts of Caregiving – Stories of Hardship, Hope and Healing, believes the secret of being a successful caregiver is to first take good care of yourself.  Although her book was first published over a decade ago the personal stories that family caregiver have shared continue to offer comfort, insights, and inspiration. Many will benefit from reading the compilation of 30 stories of caregivers who tell their  personal stories of taking care of an ill, disabled or aging loved one.  Goldman notes all of these remarkable people cope with adversity in ways that leave us wondering: “Could I measure up to the challenge?” Most importantly, each of their stories reveals how the hardships of caregiving can be turned into a journey of hope and self-discovery,” she says.

           In her timeless book, Goldman’s interviews include: Dana Reeve (wife of the late actor Christopher Reeve), former First Lady Rosalynn Carter, Pulitzer Prize-winning author Studs Terkel, and others whose lives were forever changed by their care giving experience. There are also personal experiences told by many whose names you won’t recognize, yet their stories offer personal insights that can nurture and nourish   caregivers of any age.

            “Taking on the commitment as a family caregiver opens the door to frustration, irritation, indecision, fear, guilt and stress,” says Goldman, so the caregiver must take care of themselves first. Goldman notes that a mantra she often suggest to post on your mirror, refrigerator, or anywhere else to remind yourself  that you must “Take care of yourself so you can take care of others.”  It is well known that caregivers often lose sleep, don’t eat properly, don’t take breaks, and don’t believe they matter as much as the person who they’re providing care for, she adds.  “Caregivers very often put themselves and their needs last on the list. To be the best caregiver you can be you must care for yourself”.

             According to Goldman, you can be a better, more efficient caregiver if you get enough sleep, eat regular meals, and make a plan to get relief for some period of each day. “I know caregivers are often reluctant to ask a friend to fill in at home while you go to have your hair set, or meet a friend for lunch, or go for a walk in the park. Yet an hour or two away can nourish a caregiver for the next 24 hours,” she says.

             Goldman suggests that caregivers can care for themselves by attending regular support groups, sharing with a friend three things that went right during a day (when everything seems going wrong), or taking a hot bath, reading a magazine, spending a bit of  time in your garden, taking a short nap, or eating a chocolate bar!   It’s often the little things that count in surviving each day and the challenges of being an aging baby boomer caregiver or taking on the caregiver role at any age.  

 Taping into Resources…

             It is difficult for many caregivers navigate the long-term care system to find the most appropriate programs and services to keep their loved ones at home.  According to the Rhode Island Department of Human Services, Division of Elderly Affairs, the National Family Caregivers Association (NFCA) might just provide that crucial information for caregivers.  The Kensington, Maryland-based clearing house (at www.nfcacares.org) offers information on a variety of topics including, stress and family caregiving, caregiver advocacy, care management techniques, support groups, communication with health care professionals, reaching out for help, and other issues.  For more information about the books written by Connie Goldman, go to www.congoldman.org your local bookstore or Amazon.com

            Herb Weiss is a Pawtucket-based freelance writer who covers aging, health care and medical issues.  His Commentaries appear in two daily newspapers, The Pawtucket Times and Woonsocket Call.