Category Archives for Caregivers

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.

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.