Category Archives for Caregivers

The Best Of…The Challenges of Caring for Your Aging Parent

Published July 3, 2008,  All Pawtucket All The Time

          It’s not easy being a parent.  Combine this with being a primary caregiver for an aging frail relative and you work a 48 hour day.  Sixty year old Karen Sciolto, like many of her aging baby boomer peers, took on care giving responsibilities in her mid-fifties.

           Five years earlier, the Scituate resident began her experience of taking care of frail adults by working as a Certified Nursing Assistant (CNA).  “You really had to physically be able to move a person around and help to meet their emotional needs,” she stated.  She acknowledges that she was “sort of a jack-of-all-trades” and had to “know a little bit about a lot of things.”

          With her CNA job, Sciolto knew that the caregiver role and responsibilities in her family would ultimately fall upon her shoulders because her parents, even relatives were getting older.  “Very soiled long-john underwear discovered after the visit to an emergency room and a later inspection of the uncle’s house revealed “cockroaches and filth.”  He just could not take care of himself, she said.   Scattered piles of newspapers mingled with important papers and money found hidden in holes in his mattress pushed the niece in 2000 to become a caregiver for her 87-year-old uncle whose physical and mental health were deteriorating. 

         For six years, Sciolto was the solo caregiver of her uncle.  She would drop him off each day to the local senior center to give him physical, emotional and social stimulation.  The aging baby boomer would also juggle a variety of daily tasks — CNA assignments, housework, along with raising her daughter and caring for three horses.  “As a caregiver my whole life, revolved around meeting his needs,” she said. 

       Many times she was overwhelmed with the stress of providing 24 hour a day care for her frail uncle.  “You were lucky if you went to bed and could get a good nights sleep,” she added. 

A Generational Experience…

         According to Roberta Hawkins, Executive Director of the  Alliance for Better Long-Term Care, Sciolto’s care giving experiences are not unique but common to thousands of aging baby boomers in Rhode Island.  

         Rhode Island’s most visible aging advocate, who has led this nonprofit agency for over 32 years, understands care giving both on a personal and professional level.  In her sixties, Hawkins looks back at her personal experiences. In her younger days she took care of grandparents while raising her young daughter. In recent years, Hawkins would raise her grandchildren while providing care to her disable husband.

        Hawkins warns aging baby boomers “not to take on [responsibilities] that you can’t do.”  Know your abilities and also your limitations, she says.  “You really need to think clearly if you are the right person who can provide that care.”

        “Often times, adult children will feel guilty if they do not take care of their disabled parents,” observes Hawkins. “This may not be the right move due to their responsibility of raising children.  They may have limited patience to deal with the changing health care needs and personality of their older parent.”   

        If older parent and child did not get along in their earlier years, care giving just won’t work,” Hawkins says.  “There won’t be the patience or the connection needed to provide care in peace and harmony.”

 Every Day and Night

          “Care giving is a 24 hour, 7 day a week job,” Hawkins says. “Even if you bring in outside caregivers during the day you will still have to deal with nighttime and weekends,” she says.  “Nobody is happy” with household stress.  This may push the older person into withdrawing more into themselves so they become less of a burden to their adult children.   

          Sending your older parent to a senior center or day care site might not be the most appropriate strategy,” Hawkins adds.  “If the person was not a friendly or a social person, attending day care will not be a very happy experience,” she says.

         Meanwhile, Hawkins says that some problems may also surface if an adult child hires an outside caregiver to keep their aging parent at home.  “The older parent may be a mistrustful person and not want a stranger coming into their own home. This person may resent the fact that their children won’t be there for them and this can result in continuous complaints about the caregiver,” she says.

       “Before hiring an outside caregiver or becoming one yourself, always have a very frank discussion with the older person about your decision,” Hawkins recommends.  Conversations should begin before a health issue forces an adult child or spouse to make this decision without the wishes and desires of their older parent being known, she adds.

       Also, when the time comes to consider placement in an assisted living or nursing home facility, it becomes crucial for the older person to be included in the decision making process.  “Give them all the pros and cons for each and every decision,” Hawkins says.  “Match the older person to the place they are going to live in, not the other way around.”

Promises Made, Promises Broken

       Finally, caregivers must give themselves some time off to recharge their batteries.  “If there are siblings around be adamant that they help take care of their older parent, too” she tells aging baby boomers shouldering the care giving responsibilities.  “Everyone promises but they tend to be too busy with their lives to give any assistance,” she says.

       Sadly, Hawkins brings up the old saying “One mother can bring up five children but five children may not take care of the mom.”  So, true, she says, noting “I see it all the time.”

       Herb Weiss is a Pawtucket-based freelance writer covering aging, medical and health care issues.  The article was published in the July 3, 2008, All Pawtucket All The Time.  He can be reached at hweissri@aol.com.

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.

Report Examines Myths, realities of Consumer -Directed Services

Published in Pawtucket Times on March 17, 2003

Eighty-nine-year-old Lillian Brannon raves about the Arkansas-based “Independent Choices (A Cash and Counseling Demonstration Program) that allowed her to stay independent and at home with the assistance of four aides.

The program “has really changed my life so much,” she says. “It has really helped me to live more independently than I have ever have …I would not trade it for anything.”

Tammy Svihla, who suffers from MS gives a thumbs-up to the New Jersey-based “Personal Preferences” programs that has allowed her to more creatively used Medicaid funds. Svihla notes she was able to purchase a “Lazy-boy” lift chair, usually not covered by Medicaid. It was logical for Svihla to purchase the lift chair because it was difficult for her to get up from her couch because of soft cushions.

These two  testimonials, among three others, set the tone for a newly released report that examines the myths and realities that now surrounds the philosophy of consumer-directed services.

The orientation allows consumers to make choices about the services they receive, assess their own needs, and determine how ad by whom these needs should be met, and then  monitor the quality of services they have received.

“The Myths and Realities of Consumer-Directed Services for Older Persons,” authored by Marie R. Squillace, PhD., federal project officer, National Family Caregiver Support Program with the U.S. Department of Health and Human Services, and President and CEO James Firman, Ed.D., of the National Council on Aging, attempts to build upon current knowledge obtained from research and demonstration projects to make   consumer direction “an integral part of the options available for all older persons who may need long-term care.”

Throughout the 24-page report the authors use personal experiences, case studies, and research to dispel 12 myths about the philosophy of consumer-directed services.

Let’s take a look at three of the myths.:

Squillace and Firman urge the reader to not believe the myth that consumer-directed services are not appropriate for seniors with disabilities or for those with cognitive impairments.

Here’s the reality: studies of programs like California’s In-Home Supportive Services (IHSS), show that many elderly can express daily preferences for care and can benefit from that control. For more than 30 years, low-income persons over age 65 who are enrolled in the IHSS program have  hired, fired, trained, scheduled and supervised individual providers.

Moreover, the Family Caregiver Alliance in San Francisco adds research indicates that persons with early to moderate cognitive impairment still can express daily preferences for their care, sharing their values and preferences.  For those with significant cognitive disabilities, a University of Maryland Center on Aging report suggests family caregivers, a circle of friends, or close associates who know the consumer well can interpret the person’s non-verbal expressions.

Another myth of the Squillace and Firman report is that “self-directing consumers will “misuse funds” or “be exploited.”

Not true, say the authors, citing “Cash and Counseling Programs” that will allow consumers to use their alliances to purchase needed services so they can stay in their own homes with the assistance of a fiscal intermediary organization (FIO).

In reality, the authors note most prefer to have their funds held by the FIO, which conducts bookkeeping and accounting services to help them manage their individual helpers and pay taxes for their workers. The management can minimize concerns about misuse of funds and financial exploitation of vulnerable individuals while diminishing the administrative responsibilities placed on self-directed consumers, the report says.

Finally, some spread the myth that consumer direction is just an experiment, noting more, nothing less. But Squillace and Firman say this philosophy has progress “far beyond the experimental phase.

A growing number of consumer advocates, program administrators and policy makers are now embracing this philosophy.”

The authors recite a 2001 survey that identified 139 consumer-directed service programs that were operating across most of the nation, except Tennessee and the District of Columbia. “The estimated total number of people being served by these programs reached about half a million.

Squillace and Firman state: “Consumer direction is not a sliver bullet or a panacea for the nation’s long-term care challenge, but it is an important part of the solution.”

I believe that.

If they haven’t, hopefully the directors of the Department of Elderly Affairs and Human Services will develop programs that encompass the philosophy consumer directed services.  Enhanced quality of life can be a result of aging baby boomers and seniors controlling the choice over the purchase of their long-term care services. Ultimately, it is all about empowerment.

For more information about consumer-directed care, visit www.consumerdirection.org.

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