Tag Archives for caregiving

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.

Study Finds Caregiving Becomes Second Job for Many

Published in Pawtucket times on April 12, 2004

The demands of caregiving can seem like a 36-hour workday, Alzheimer’s researchers Nancy Mace and Dr., Peter Rabins tell us.

So true. A new study compiled by the National Alliance for Caregiving (NAC) and the AARP that was released last week supports the researcher’s views – that caregiving can consume one’s life, often becoming a second job for many.

According to the 138-page report, entitled, “Caregiving in America,’ more Americans are now holding “second jobs” – functioning as the family caregiver.

The national caregiver survey, which was funded by MetLife Foundation, estimates there are 44.4 million adult caregivers who provide unpaid care to another adult. This care ranges from helping another manage finances, shopping for groceries, doing housework, and assisting others getting in and out of beds or chairs, getting dressed, getting to and from the toilet, bathing, showering and eating.

The study found unpaid care- provided by family caregivers – totaled $257 billion annually. Quite a sum.

Tshe caregiver study, released on April 6, paints a picture of the typical caregiver – 46 years old, married, has some college experience, and provides care to a woman age 50 and older.  The caregiver’s recipient is most likely an older female who is widowed.

The findings are based on a national survey of 6,139 adults, 1,247 of whom are qualified as caregivers. The margin of error for a sample this size is 2.8 percent, at a 95 percent level of confidence.

Almost six in 10, or 59 percent, of these caregivers either work or have worked while providing care, the study found. Moreover, 62 percent have had to make some adjustments to their jobs, from arriving late to work to giving up a job entirely.

Caregiving does not only impact the personal and working life of women, the study says, but it impacts men, too. Almost four in ten (39 percent) caregivers are men, and 60 percent of these individuals are working full-time.

In a written statement announcing the release of this study, the release of this study, Gail Hunt, NAC’s executive director, noted that the study found caregivers need more information and education. “Two-thirds of caregiver respondents says they need help or information on at least one of 14 activities or issues that caregivers commonly face,” she said.

The study’s findings indicate that three in 10 caregivers carry the heaviest load and are most likely to report physical strain, emotional stress and financial hardship as a result of their caregiving responsibilities, compared to caregivers who provide fewer hours of care and perform fewer  demanding tasks.

In addition, the study found caregivers who provide higher levels of care (most likely women) may find their responsibilities complicated by the fact they tend to be older and more likely to say their health is only “fair,” compared to younger caregivers.

Nearly eight in 10 people who need care are age 50 or older (79 percent), the study found. Caregivers say these older care recipients are afflicted with age-related health problems (15 percent), specifically heart disease, cancer, diabetes, Alzheimer’s or other mental confusion ailments.

But younger recipients (ages 18-49) of caregiving often face problems of mental illness and depression (23 percent), the study added.

Caregiving may consume a person’s later years.

The study found the average length of caregiving provided is 4.3 years; however, three in 10 caregivers report providing care for more than five years.

Older caregivers (ages 50 and older), who tend to be caring for their mothers and grandmothers, are among the most likely to have provided care for 20 years or more. The survey found 17 percent of caregivers between the ages of 50-64 years and 18 percent of those over 65 have been providing care for more than a decade.

“I think people who are dealing with caregiving are unaware that many of their coworkers are dealing with the same thing,” AARP Board Member Jennie Chin Hansen claimed in the written statement. “This report shows just how common this  is,” she says.

Like the caregiver respondents of NAC/AARP’s caregiver study, tens of thousands of Ocean State caregivers juggle the demands of taking care of an older relative while taking care of their family and working a job. The study’s findings are just another reason why Gov. Doanld Carcieri and state lawmakers must adequately fund the Department of Elderly Affair’s (DEA) copay program and respite programs.

DEA’s co-pay program assists 1,500 frail seniors who do not qualify for the state’s Medicaid program, to partially pay for the services or certified nursing assistants (CNAs) to assist with bathing, meals, shopping, laundry and light housekeeping. In addition, DEA’s co-pay program also provides subsidies for adult day care.

Last October, DEA’s freeze on new admissions to its co-pay program left more than 200 frail seniors  on a waiting list for home and community-based services. Although Carcieri has increased funding for DEA’s co-pay program by $ 200,000 in his 2005 budget, senior groups say this amount is still not enough. The governor’s increase in his budget is estimated to only serve 60 to 80 out of the 200 seniors currently on this waiting list.

DEA’s freeze on new admissions to its respite program, which enables caregivers to take a break from the grueling demands of taking care of frail family members, may adversely impact the health and wellbeing of caregivers who can’t take advantage of this program.

The freeze placed on the respite care program will continue for the rest of this fiscal year- nobody is sure how long the freeze for this initiative will last.

In years to come, we will see a growing number of Rhode Islanders  taking on the role of unpaid caregivers (a second job) to keep a frail family member at home. Lack of access to community-based services and to caregivers oftentimes will lead to placement in  a costly nursing home.

From a budgetary stance, Carcieri and state lawmakers may well want to adequately fund DEA’s co-pay and respite program because of the ultimate cost savings to the state budget. On the other hand, supporting a policy that assists caregivers to keep seniors independent and in their homes is simply the right thing to do.

Rhode Islanders Will Benefit for Long-Term Care Improvements

Published in Pawtucket times on April 5, 2004

An AARP membership application just arrived last week, inviting me to join the nation’s largest senior advocacy group.

AARP’s invitation to join clearly announces my major milestone in my life, when my June birthday officially pushes me into my 50s.

Celebrating my 50th birthday is no problem for me on a personal level, especially with my philosophy that, as with wine, one gets better with age.

But, as a writer on health care and aging issues, I see problems as to how I might access needed home and community-based services or nursing hoe care in my later years, especially if the state does not fix its problematic long-term care deliverly system.

The graying of Rhode Island’s population is taxing the state’s existing long-term care delivery system and will continue to do so for years to come. In response, state policymakers have taken a Band-Aid approach in trying to fix the fragmented system.

Already the Ocean State’s senior population, ages 60 and over, comprises more than 18 percent of the state’s total population. Gov. Don Carcieri and state lawmakers should be very concerned that Rhode Island’s population continues to age at the same time its long-term care delivery system needs an immediate overhaul.

Everyone knows it is extremely difficult for caregivers and seniors to negative the Ocean State’s long-term care system. Just ask any aging baby boomer (persons born between 1946 and 1964), and many will say that it is extremely difficult to find the needed programs and services to k eep mom and dad at home.

Today, many adult children who are juggling careers and raising children are also shouldering additional caregiving responsibilities to their olde parents. Even if their parents have been able to put a little money aside for their retirement, their children see their inheritance quickly being whittled down by thousands of dollars a month, all spent on costly pharmaceuticals and long-term care services.

Money can buy you anything in life, including home and community-based care and nursing home services.  Staying independent at home is still difficult for may moderate-income Ocean State seniors who cannot pay or find providers , especially with the Department of Elderly Affair’s (DEA) co-pay program not being fully-funded.

DEA’s co-pay program aids more that 1,500 frail seniors who do not qualify for the state’s Medicaid program, but who require ongoing services to remain in their homes. This funding helps pay for certified nursing assistants, who assist seniors with bathing, meals, shopping, laundry and light house keeping. DEA’s co-pay program slso provides subsidies for adult day care.

Last October, DEA’s freeze on new admissions to its co-pay program left more than 200 frail seniors on a waiting list for home and community based services.

While Gov. Carcieri recently gave an additional $ 200,000 in funding to DEA’s co-pay program in his 2005 budget, senior advocates have warned this amount is not enough. It is estimated this additional funding will serve 60 to 80 seniors out of the 200 persons currently on the waiting list.

Meanwhile, DEA has even put a freeze on new admissions to its respite program, which enables caregivers to take a break from the grueling physical and psychological demands of taking care of a frail elderly family resident.  This freeze will continue for the rest of this fiscal year, and nobody is sure how long the freeze for this initiative will last.

Hugh Hall, chair of the R.I. Health Care Association, tells All About Seniors that nursing homes will also be especially hit hard as state funding continues to diminish at the same time as  the cost of services and regulatory requirements increases.

“The state’s budget crisis is causing the governor to not meet a commitment in restructuring an antiquated Medicaid reimbursement system that pays for the care provided to 75 percent of the 10,000 frail residents in nursing homes,” said Hall.

This year, Carcieri, citing budgetary constraints, did not keep his promise to move forward with Part Two of the Medicaid reimbursement restricting, said Hall.

“This will have serious effects on the financial viability and quality of care provided in more than 70 small nursing homes throughout the state,” he said.

The huge budget deficient will continue to force Carcieri’s and state lawmakers hacking of many worthy programs and services previously funded in the state budget.  However, the state’s 2005 budget must adequately fund DEA’s co-pay and respite initiatives that keep frail seniors at home in their communities through the use of less costly home and community-based services.

The state must also keep its promise to adequately fund the state’s nursing homes for providing the needed medical care to those who are too sick to stay at home.

Hopefully, in 15 years, when I reach my next milestone – turning 65 – the state policy makers will have hammered out a much improved long-term care delivery system.

A commitment by Carcieri and state lawmakers to fix today’s fragmented long-term care delivery system will have long-range consequences, ultimately beneiting aging baby boomers, their children, and their children’s children.

Indeed, all future generations in this state will ultimately benefit from sound long-term care policy.