Category Archives for Caregivers

The Best Of…Keeping Tabs on Your Wandering Parent

Published August 20, 2008, All Pawtucket All The Time          

           With the graying of Rhode Island’s population, a growing number of aging baby boomers are now taking care of their elderly parents who reside in their homes.  Adult children are often juggling professional careers and family responsibilities while spending countless of hours each week making sure their elderly parents needs are taken care of such as getting them to doctor’s appointments, taking them grocery shopping, assisting in house hold chores, or bringing them to family events.

            In recent months this writer discovered several close friends are dealing with parents facing these very issues – perhaps compounded with early stages of dementia or Alzheimer’s.  Often times the grown children suffer in silence – balancing the daily burdens of their own lives – while steadfastly tending to their parents care and needs, a very time consuming task especially if the older parent is frail or becomes confused and wandering.                                                                                                                                                                                

 Wandering a Common Occurrence

            This “care giving” life-stage experience is not uncommon, especially with approximately 25,000 Rhode Islanders who are afflicted with Alzheimer’s.  According to Elizabeth Morancy, President of the Alzheimer’s Association, Rhode Island Chapter, about 70% of people with dementia reside at home in the community    She estimates that six out of 10 people with Alzheimer’s will “wander” to some degree.

            Morancy notes that “wandering” occurs when a person with dementia becomes missing – where an individual becomes lost after leaving their home.  The restless individual may actually leave having a purpose or goal in mind, maybe he or she might search for an item that was lost, look for a child, or try to fulfill a former job responsibility.

            “Even situations that seem harmless to us can become dangerous, even fatal to the Alzheimer’s person,” Morancy notes.  Because a confused person does not panic not realizing their dangerous predicament of walking onto a highway or into woods, a very dangerous even a very life threatening, situation occurs, she says.

The ABCs of Reducing Wandering

            According to Morancy, wandering can be reduced by following a few tips. Movement and exercise can reduce behavior, agitation and restlessness (causes for this negative behavior).  Make sure that all basic needs, such as toileting, nutrition and thirst, are met.  Involve the person with dementia in performing daily activities like folding laundry or making dinner.  Color-matching cloth over door knobs can effectively camouflage the hardware. A black rectangle on the floor placed inside the door way can become a visual barrier, keeping the wanderer inside.  By placing a mirror near a doorway, a reflection of the person’s face will often keep the individual from opening the door and leaving the house.   

             Even simple actions like rigging an alarm by hanging tin cans from a door with string or using door locks the confused person can not operate work effectively, too, Morancy says.

             Morancy adds that one of the most effective ways of reducing wandering is to register the person with Alzheimer’s or dementia in Alzheimer’s Association’s MedicAlert + Safe Return Program.  It operates through local police departments and other emergency responder agencies working with Alzheimer’s Association chapters across the country.  The government-funded initiative has a national information and photo database.  It operates 24 hours a day, seven days a week, with a toll free crisis line. .        

            Once registered, when a person with dementia wanders or becomes lost, a phone call immediately activates a community support network that works together to reunite the lost person with their caregivers.  Once the wandering individual is found, an identification product on the wanderer provides law officials with information to contact the caregiver.  The nearest Alzheimer’s Association office provides support during the rescue efforts.  Medical information is immediately available if needed.

             MedicAlert + Safe Return Program needs to be tweaked, say Morancy.  “The initiative is not yet pro-active. Although the registration helps identify the person who wears an identity bracelets or necklace or carries wallet identity card (noting an 800 toll free number) because the identity information enables caregivers to ultimately be contacted, this is just after the fact,” she says. “There is no universal system that will track down persons while they are lost.

             However, in other states, Project Lifesaver, administered by the local sheriff departments, utilizes a tracking mechanism.  However, its high cost decreases its use throughout the nation. .

             Initiatives like MedicAlert + Safe Return and Project Lifesaver have been instrumental in returning wanders to the safe home environments.  These programs are crucial to aging baby boomers who work hard to successfully keep their confused parent at home rather than to institutionalize them. The incidence of physical harm and death increases if a person is not found within a 24 hour period.

             Care giving can be a stressful chore.  Programs like MedicAlert + Safe Return can make it just a little easier.  For more information about this Program, call 800 272-3900.

             Herb Weiss is a Pawtucket-based freelance writer covering aging, medical and health care issues. The article was published in the August 20, 2008 issue of All Pawtucket All the Time.  He can be reached at hweissri@aol.com.

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.