It’s Time to Pass RAISE Family Caregivers Act

Published in the Pawtucket Times on September 18, 2017

Editor’s Note: Four months after S. 1028, titled the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was introduced in the Senate, an updated House companion bill (H.R. 3759) gets dropped into the chamber’s legislative hopper. On September 13, Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL) along with original cosponsors Reps Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY) introduced the legislation that calls for the development of a strategy to support family caregivers. It was referred to House Committee on Education and the Workforce. At press time, Rep. David Cicilline (D-RI) will shortly become a cosponsor of H.R. 3759.

On May 3, Sens. Susan Collins (R-ME), the Chairman of Senate Aging Committee, and Tammy Baldwin (D-WI) reintroduced the RAISE Family Caregivers Act, with Sens. Lisa Murkowski (R-AK) Michael Bennet (D-CO) signing on as cosponsors. At press time, there are now 12 cosponsors. Sen. Collins and Baldwin and Reps. Harper and Castor first introduced the family caregiver legislation in July 2015, and it passed the Senate unanimously in December 2015.

Eight days later the Senate Health, Education, Labor and Pensions Committee unanimously passed this legislation by a voice vote later that month and the bipartisan legislation will now be considered by the full Senate.

The Nuts and Bolts

The House bill introduced this week is updated from the Senate version introduced in early May. That Senate version is almost identical to the Senate-passed version from 2015.

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new
developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is
authorized and it would sunset in five years.

This bipartisan caregiver legislation has been endorsed by over 60 aging and disability organizations, including the AARP, the Alzheimer’s Association, the w Michael J. Fox Foundation and the Arc.

Shouldering Caregiver Burdens

“Every day, more than 40 million ordinary Americans take on the challenge of caring for parents, spouses, children and adults with disabilities, and other loved ones so they can live independently at home and in their communities,” says AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “The RAISE Family Caregivers Act is a commonsense, bipartisan step to recognize and support our nation’s family caregivers. AARP appreciates the leadership of Representatives Harper and Castor, and we urge Congress to pass this important piece of legislation,” she notes.

According to LeaMond, the nation’s family caregivers assist loved ones with eating, bathing, dressing, transportation, medical tasks, managing finances, and more. Many do this while working full time and raising families. The unpaid care family caregivers provide—37 billion hours valued at about $470 billion annually—helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.

“Caregiving is, in one way or another, now an inevitable part of everyone’s future,” said AARP Rhode Island State Director Kathleen Connell. “It has been said that if you ask people about caregiving they fall into one of three or more categories: They know a caregiver, they are a caregiver or they will require a caregiver. AARP works hard at the state and federal level to direct resources and support to family caregivers. In Rhode Island, we have fought successfully for temporary caregiver insurance (TCI), the CARE Act, accessory dwelling unit legislation and a new fund to help offset the cost of ‘livable’ home improvements that benefit caregiving and make aging in place easier.”

“In the upcoming special session of the General Assembly, another key caregiving bill will be before lawmakers,” Connell added. “Earned Paid Sick Leave will be especially helpful to working family caregivers whose employers do not offer paid time off. Temporary caregiver insurance requires several days advanced notice. That can be helpful, for example, if a family member has a scheduled test or medical procedure. Earned paid sick leave would allow employees to used paid sick time when they are called away to attend to immediate emergencies.”

“The RAISE Family Caregivers Act is intended to provide a policy framework for improving caregiver support from national level down to states, cities and towns. In short, where the caregiver rubber meets the road,” Connell said.

Caregiver Legislative Proposal a Bipartisan Issue

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregivers step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

With many caregivers putting their own health at risk, experiencing experience high-levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression, these individuals need the support and assistance that the enactment of the RAISE Family Caregivers Act could help bring about. Both sides of the aisle must put their political differences aside and push for passage. Both Republicans and Democrats shoulder caregiving duties.

Quickly passing the RAISE Family Caregivers Act in the Senate and House and sending it to the desk of President Donald Trump for his signature is the right thing to do.

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Report Hones in on Caregiving Costs

Published in Woonsocket Call on November 20, 2016

On the last day of October, a 537 word proclamation issued by President Barack Obama proclaimed November 2016 as National Family Caregiver (NFC) month. In this official decree the president encouraged the nation to pay tribute to 90 million caregivers who work tirelessly care for family members, friends, and even neighbors.

Obama recognizing the nation’s caregivers came about through the lobbying efforts of Caregiver Action Network (the National Family Caregivers Association). The Washington, DC-based group began its efforts to nationally recognize family caregivers in 1994. Three years later, President Clinton signed the first NFC Month Presidential Proclamation and every president since that time has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November.

On the heels of Obama’s signed proclamation comes the release of a new AARP report that details the out-of-pocket cost of caregiving. According to researchers, family caregivers spend an average of nearly 20 percent of their income providing care for a family member or other loved one. Along with increased out-of-pocket (OOP) expense, the study also explores other financial and personal strains that family caregivers may experience as result of their caregiving activities.

The Financial Strain of Caregiving

AARP’s 56 page research report “Family Caregiving and Out-of-Pocket Costs: 2016 Report,” noted that caregivers spend an average of $6,954 in OOP costs related to caregiving, with Hispanic/Latino and low-income family caregivers spending an average of 44 percent of their total annual income.

“This study spotlights the financial toll on family caregivers – particularly those with modest incomes,” said AARP Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “Whether helping to pay for services or make home modifications, the costs can be enormous and may put their own economic and retirement security at risk. As a nation, we need to do more to support America’s greatest support system. Passing the bipartisan Credit for Caring Act that provides a federal tax credit of up to $3,000 would give some sorely needed financial relief to eligible family caregivers.”

AARP’s report, released November 14, 2016, determined the amount of money that family caregivers spent over the last year providing help or assistance to a loved one. Certain groups of family caregivers spend disproportionately more in OOP expenses, said the researchers.

AARP’s report, prepared by Chuck Rainville, Laura Skufca and Laura Mehegan, noted that family caregivers of all ages spend $6,954 in OOP costs related to caregiving on average. They are earning less than $32,500 are under significant financial strain, spending an average of 44 percent of their annual income on caregiving.

Family caregivers caring for adults with dementia spend nearly twice the OOP costs ($10,697) than those caring for adults without dementia ($5,758), the AARP report found.

Cultural Diversity and Caregiver Costs

Researchers looked at cultural diversity as it related to OOP expenses of family caregivers. According to their findings, Hispanic/Latino family caregivers spend an average of $9,022 representing 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616 or 34 percent, white family caregivers spend $6,964 or 14 percent, and Asian Americans/Pacific Islanders spend $2,935 or 9 percent.

As expected, long-distance family caregivers had the highest OOP costs at $11,923 compared with family caregivers living with or nearby their care recipients.

The AARP report notes that increased OOP forces family caregivers to dip into savings, cut back on personal their spending, and they save less for retirement. Some must take out loans to make financial ends meet. Additionally, more than half of family caregivers are cutting back on leisure spending and also reported a report a work-related strain such as having to take unpaid time off.

“Many family caregivers experience a great deal of physical, emotional, and financial strain,” added Susan Reinhard, RN, PhD, Senior Vice President and Director, AARP Public Policy Institute. “This report highlights why AARP supports the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act that would require the development of a national strategy to support family caregivers.”

AARP Rhode Island State Director Kathleen Connell says that AARP’s recently released report verifies what most family caregivers know all too well: Providing for a loved one challenges caregivers in many ways and out-of-pocket expenses certainly is one of them, she says.

“In conversations I’ve had with caregivers over the years, I have found most all consider their efforts a responsibility as well as a labor of love. They rarely complain about cost because, I suspect, they try never to characterize caregiving as a burden,” says Connell..

Connell says, “With passage of the CARE Act and its implementation coming in 2017, Rhode Island is among the states leading the way in caregiver support. We cannot rest. You may be a caregiver. You may know a caregiver. You may someday rely on a caregiver. Any way you look at it, you need to be in the conversation about future needs.”

This study of a nationally representative sample of 1,864 family caregivers was conducted by GfK from July 18–August 28, 2016. All study respondents were currently providing unpaid care to a relative or friend age 18 or older to help them take care of themselves.

The full results of AARP’s caregiver report can be found here: http://www.aarp.org/caregivercosts

Winning the Votes of Older Women

Published in Pawtucket Times on October 10, 2016

On Oct. 7, Washington Post reporter David Fahrenthol’s story broke detailing a three minute video of GOP Presidential candidate Donald Trump wearing a hot microphone during a 2005 bus ride with former-host Bill Bush, of “Access Hollywood” to the set of “Days of Our Lives” where the real estate mogul had a walk on cameo on the soap opera. The video captured Trump saying “And when you’re a star they let you do it. You can do anything …Grab them by the p—y. You can do anything” and crudely describing his failed attempts to seduce a woman while being recently married.

Reaction came swiftly to Trump’s locker room banter with Bush. “No woman should never be described in these terms or talked about in this manner. Ever,” said Reince Priebus, the chairman of the Republican National Committee, who was doing damage control to keep woman voters from voting Democrat. The leaked video has also resulted in a number of Republican Senate and House candidates running in November to withdrawal their endorsements of Trump.

This is horrific,” Democratic Presidential Candidate Hillary Clinton said on Twitter, noting a link to the Washington Post article. “We cannot allow this man to become president.”

The embattled Trump initially issued a statement and later a video to try to defuse the controversy and get his flailing campaign back on track 30 days before the November presidential election.

Many political pundits believe that Trump’s off-the-cuff comments that are derogatory to woman, a powerful voting block who decide elections, might just block his chances of becoming the next occupant of the White House.

Women’s Campaign Issues

One day before the politically damaging Washington Post article appeared detailing Trump’s lewd comments in a leaked video, AARP, the nation’s largest aging advocacy group, released survey findings highlighting issues of importance to women voters ages 50 to 69 in key battleground states.

“Older women voters – particularly women of the Boomer generation — could help decide the 2016 presidential election,” said AARP Executive Vice President Nancy LeaMond. “Yet many of their real concerns are being ignored and their questions overlooked in a largely issueless campaign. The candidates still have an opportunity to talk to these women about the issues that matter to them.”

The 27 page report, Women Voters Ages 50 +: Economic Anxieties, Social Security, and the 2016 Election, says that heading into this year’s presidential election, Democratic candidate Hillary Clinton has a whopping 15 point lead (48 percent) over the GOP’s standard bearer Donald Trump (33 percent) among woman over age 50. The findings also indicate that older woman favor Democrats running for Congress by a narrower margin (47 percent are inclined to vote for a Democrat while 36 percent inclined to vote for a Republican).

AARP’s survey results noted that majority of woman age 50 and over believe that Clinton will do a better job than Trump in addressing family caregiving (Clinton, 57 percent; Trump, 27 percent), education (56 percent; 31 percent), environment (55 percent; 29 percent) and health (53 percent; 35 percent). The Democratic presidential candidate is also perceived by older woman as having a slight advantage over Trump in controlling government spending and controlling the budget deficit (44 percent; 43 percent).

“It’s the Economy Stupid”
Plus Retirement Issues

As to the economy, the majority of the older woman respondents across these 15 battle ground states worry about pocketbook issues such as prices rising faster than their income (61 percent) and having to pay too much in taxes (54 percent. Four in ten (41%) worry about having prescription drug expenses they cannot afford. Women with lower household incomes are especially likely to worry about these pocketbook issues.

Also, the AARP survey found that many women also worry about retirement security, including their ability to care for themselves as they age (45 percent), not having financial security in retirement (41 percent), and whether Social Security will be there when they retire (38 percent). These retirement-related issues are of particular concern to women with lower household incomes.

Additionally, most women (53 percent) say that the nearly 25 percent cut in Social Security benefits that would result from not addressing the solvency of Social Security would impact them, including 32 percent who say it would impact them “a lot.”

Fixing Social Security is a key issue to older woman voters. The AARP survey noted that the vast majority of women voters ages 50+ (72 percent) say that the next president and Congress should address Social Security immediately.

Most women (67 percent) also favor giving a caregiver credit in calculating Social Security benefits to people who take time off from work to care for loved ones, says the report.

Social Security is flying under the radar screen of the voter. The survey findings noted that few women say that they have heard about the candidates’ plans for Social Security. About one in three (34 percent) say they have seen or heard anything from Clinton, and even fewer (20 percent) say that they have seen or heard anything from Trump.

The AARP survey found that over 54 percent of the respondents are currently, or have been, a family caregiver providing unpaid care to an adult loved one. More than eight in ten (85 percent) women voter’s ages 50+ think it is important for the presidential candidates to talk about how they would support family caregivers who provide unpaid care to aging parents or spouses or other adult family members.

Finally, four in ten (41 percent) women are not confident that they will be able to cover the cost of care for an aging or elderly parent, spouse, or other family member.

Women: A Powerful Voting Block

According to the Center for American Women in Politics, “In recent elections voter turnout rates for women have equaled or exceeded voter turnout rates for men. Women, who constitute more than half of the population, have cast between four to seven million more votes than men in recent elections.“

Only weeks will tell if embattled Trump can overcome the political backlash generated from his locker room banter degrading woman, political insiders predicting that the gender vote gap might just historically widen.

AARP’s survey findings provide sound advice to Clinton and Trump and congressional candidates who are scrambling for last minute votes, especially from married women, younger millennials and women living in the nation’s suburbs. The women’s voting block might just surely tilt the election to a candidate in many legislative districts.

New Approach to Support Caregivers Needed

Published in Woonsocket Call on September 18, 2016

Currently 18 million people across the nation provide assistance with activities of daily living, transportation, finances, wound care and giving injections to their aging parents, spouses, family and friends. AARP Rhode Island estimates that 148,000 Rhode Islanders are caregivers. The future is bleak for those requiring caregiving assistance in the near future. According to a recently leased report by The National Academies of Sciences, Engineering, and Medicine (NASEM), the need for family caregivers will drastically increase but demographic shifts reduce the potential pool of caregivers to tap.

Being a Caregiver in America

The 340 page NASEM report (taking 20 months to produce) calls for the retooling of the nation’s health and long-term care delivery system through team based care (using a person and family care model approach) and policy changes to better support family caregivers in the delivery of care to older Americans.

The recommendations detailed in Families Caring for an Aging America, released on September 13, 2016, challenges policy makers “to transform the health care experience for older adults and their family caregivers,” says Nancy Morrow-Howell, PhD, president of the Washington, D.C.-based The Gerontological (GSA) Society of America, the nation’s largest interdisciplinary organization devoted to the field of aging. “The approach requires a multidimensional, interdisciplinary effort that spans diverse settings of care. GSA strongly supports this effort to create a person- and family-centered model for team-based care that recognizes and rewards the role of the family caregiver,” she notes.

Adds Richard Schulz, who chaired NASEM’s Committee on Family Caregiving for Older Adults (consisting of 19 caregiving experts) that oversaw this study and who serves as Distinguished Service Professor of Psychiatry, University of Pittsburgh, “Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens.”

Schultz adds, “Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives – from their health and quality of life to their relationships and economic security. If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation’s collective responsibility for caring for its older adult population.”

According to a release, NASEM’s highly anticipated report noted that by 2030, 72.8 million U.S. residents – more than 1 in 5 – will age 65 or older. According to the National Survey of Caregivers, in 2011, 17.7 million people – or approximately 7.7 percent of the total U.S. population aged 20 and older – were caregivers of an older adult because of health problems or functional impairments. This estimate does not include caregivers of nursing home residents.

Furthermore, being a caregiver is not a short-term obligation, says the report, noting that the median number of years of family care for older adults with high needs is around five years. The proportion of older adults who are most likely to need intensive support from caregivers – those in their 80s and beyond – is projected to climb from 27 percent in 2012 to 37 percent by 2050.

A Shrinking Pool of Caregivers

The NASEM’s Family Caregiving Committee says that little policy action has been taken to prepare the nation’s health care and social service delivery systems for this demographic shift. While the need for caregiving is rapidly increasing, the number of the potential family caregivers is shrinking. Current demographic trends – including lower fertility, higher rates of childlessness, and increases in divorced and never-married statuses – will decrease the pool of potential caregivers in the near future. Unlike past years, aging baby boomers and seniors will have fewer family members to rely on for their care because they will more likely be unmarried or divorced and living alone, and may be even geographically separated from their children.

The in-depth report found that family caregivers typically provide health and medical care at home, navigate a very complicated and fragmented health care and long-term services and support systems, and serve as surrogate decision makers. Although these individuals play a key role caring for older adults with disabilities and complex health needs, they are oftentimes marginalized or ignored by health care providers. Caregivers may be excluded from treatment decisions and care planning by providers who assume that they will provide a wide range of tasks called for in the older adult’s care plan.

Confirming other research studies, the committee found that caregivers have higher rates of depressive symptoms, anxiety, stress, social isolation, and emotional difficulties. Evidence also suggests that they experience lower physical well-being, elevated levels of stress hormones, higher rates of chronic disease, and impaired preventive health behaviors.

Those taking care of very impaired older adults are at the greatest risk of economic harm, because of the many hours of care and supervision they provide. However, caregiving can provide valuable lessons, helping the caregiver deal with difficult problems and bringing them closer to the recipient of care.

Next Steps

NASEM’s report calls for the next presidential administration to take immediate action to confront the health, economic, and social issues facing family caregivers. Also, the committee urges the secretary of the U.S. Department of Health and Human Services, in collaboration with other federal agencies, and private-sector organizations, to develop and implement a National Family Caregiver Strategy that recognizes the essential role family caregivers play in the well-being of older adults.

The report recommends that the nation’s health and long-term care systems must support caregiver’s health, values, and social and economic well-being, as well as address the needs of the of a growing caregiver population that is both culturally and ethnically diverse.

Federal programs (such as Medicare, Medicaid and Veterans Affairs) must also develop, test and implement effective mechanisms to ensure that family caregivers are routinely identified, assessed, and supported. Payment reforms can motivate providers to engage caregivers in the delivery of health care, too.

AARP Rhode Island State Director Kathleen Connell agrees with the NASEM’s report’s assessment that the importance of a caregiver’s role in an aging society cannot be overstated. At her organization she clearly sees an increased demand for caregivers and knows all-to-well the impact of a shrinking pool of potential caregivers on those in need.

“It is essential that we take action now to do all we can to remove obstacles and additional financial strain and mitigate physical and mental stress where possible for caregivers,” says Connell. AARP has compiled a wealth of research and information on aging issues that can be accessed on http://www.AARP.org.

Final Thoughts…

On Jan. 1, 2016, a new Rhode Island law took effect that would help Rhode Islanders avoid costly and time-consuming red tape when exercising health care, financial and other legal responsibilities for their out-of-state, elderly loved ones.

Why reinvent the wheel? Rhode Island law makers, the state’s Division on Elderly Affairs and the Lt. Governor’s Long-Term Care Coordinating Council can do more to support the state’s growing caregiver population. With the next session of the Rhode Island General Assembly starting in January 2017, state officials and lawmakers can reach out to other states to learn what state-of-the art caregiver programs can be implemented here.

For a copy of the report go to: nationalacademies.org/caregiving

Rhode Island General Assembly Seeks to Assist State’s Caregivers

Published in Woonsocket Call on June 14, 2015

With the graying of America’s population, the profile of the typical family caregiver has changed, says a new report released by the National Alliance for Caregiving and AARP. The findings trouble aging advocates who warn that as care givers age they require more long term care support and community based care services.

Taking a Look at Today’s Caregiver

The report, “Caregiving in the United States 2015,” tells us that the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers on the whole are becoming as diverse as America’s population.

According to the 81 page report, today’s family caregiver also provides unpaid care for at least 21 hours a week, and has been care giving for an average of 5-1/2 years.  These individuals expect to continue providing care to their loved ones for another 5 years. Nearly half of these higher-hour caregivers report high emotional stress (46 percent), too.

Men, often stereotyped as failing to take on caregiving responsibilities, currently represent a whopping 40 percent of family caregivers, also providing an average of 23 hours a week being a caregiver to their loved ones, adds the report.

The study’s data indicates that today nearly a quarter of the nation’s caregivers are millennials between the ages of 18 and 34 and they are equally likely to be male or female. On the other end of the spectrum, 75 and older caregivers are typically the sole support for their loved one, providing care without paid help or assistance from relatives and friends.

Meanwhile, caregivers, with an average household income of $45,700, tell the researchers that they are not only emotionally strained, but financial strained as well. These higher-hour older caregivers report difficulty in finding affordable care giving services, such as delivered meals, transportation, or in-home health services, in their community, for themselves and their loved ones.

The report also notes that “Caregivers of a close relative—like a spouse or a parent—who are likely to provide care for 21 hours or more, indicate that being noted as a family caregiver in the medical records of the care recipient would be helpful in managing their caregiving responsibilities.”

Finally, the study’s findings indicate that caregivers who live more than an hour away from their care recipient also report higher levels of financial strain (21 percent), perhaps because 4 out of 10 long-distance caregivers report the use of paid help (41 percent).

Report Calls for Supporting Caregiver Needs

As previous AARP research has shown, we’re facing a caregiving cliff,” said Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute; and chief strategist, Center to Champion Nursing in America. “By mid-century, there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

We’re especially concerned that not enough is being done to support family caregivers in the public or private sector as they age,” says Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving. “There’s a double-edged sword when we fail to support caregivers, because we put both the caregiver and the care recipient at risk,” she warns.

Hunt observes, “Rhode Island is a unique state in that it has the highest percentage of persons over age 85. The data in this report speaks to some of the challenges of a graying population, particularly the needs of caregivers who are 75 or older.”

“We know from the data that the ‘typical’ caregiver over 75 is caring for a spouse or close relative, and spends about 34 hours a week providing care. This can be extremely challenging for an older person who may be managing their own mobility and health issues, as they help a loved one with basic needs like bathing or everyday tasks like grocery shopping,” said Hunt.

Hunt says, “Rhode Island has an opportunity to continue supporting older people and their caregivers, who are also growing older and need care.”

Lawmakers Posed to Pass Caregiver Law

           In June 4th, the Senate passed SB 481 A, the CARE (Caregiver Advise, Record  and Enable) Act, to provide caregivers with timely information to allow them to provide post-discharge care.  The House Chamber passed its measure, HB 6150 Sub A on June 10th.  Both chambers must now approve the legislation from the opposite chamber.  If passed, they go to the Governor for approval.  This legislation will be invaluable to the state’s 148,000 caregivers who provided 142 million hours of care for loved ones.

“We are delighted that – upon the CARE Act becoming law – Rhode Island will join seven other states that  have enacted CARE Act legislation, with bills in three other states awaiting their respective Governor’s signatures,” said AARP State Director Kathleen Connell.

“Together, AARP worked with a strong coalition of stakeholders, as well as the House and Senate sponsors, Representative Eileen Naughton, and Senator Gayle Goldin, and the members of the House’s Health, Education and Welfare Committee and the Senate’s Health and Human Services Committee,“ notes Connell.

“The passage of the CARE Act dovetails with the release of “Caregiving in the United States 2015,” which  presents a portrait of unpaid family caregivers today. It specifically addresses vulnerable groups of caregivers who face complex, high burden care situations. They tend to be older caregivers, who had no other option but to take on caregiving duties.” adds Connell.

Connell says, “It is sobering to conclude that in Rhode Island, with its above-average older population, we risk seeing more and more of old sick people caring for older sicker people. Clearly, that’s not a good thing and it needs addressing sooner than later.”

“One thing we noticed as the CARE Act made its way through the General Assembly was that a number of lawmakers shared their own personal caregiving stories. Some issues are harder to personally identify with than others, but when it comes to caregiving, it’s good to know we have this kind of attention. The report adds data and statistics that should help frame solutions,” says Connell.

 

Director Charles Fogarty, who oversees the state’s Division of Elderly Affairs (DEA), sees the value of AARP’s report highlighting the “critical role” of caregivers taking care of their loved one.  “Family support is essential to allow seniors to stay in their own homes and live as independently as possible, he says, noting that federal funds allows DEA to administer respite and care giver support programs.

“As the baby boomer generation ages, DEA will continue to seek out resources that provide support to family members who care for their loved one,” says Fogarty.

The CARE Act can provide assistance to those tirelessly care for their aged or disabled loved ones.   Kudos for the Rhode Island General Assembly giving them the tools to do a better job.

Herb Weiss, LRI ’12 is a Pawtucket-based 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.