Tag Archives for caregiving

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.

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.