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.