Caregivers need care themselves for the challenges of a disabled loved one

By Nori St. Paul
Published on: 6/30/2013

Not long ago, Naples resident Shirley Hubers became an adult caregiver. Her husband Dave, who recently turned 70, had had a tough time this past couple of years.

Since 2011, he has had a challenging double knee replacement. Then he suffered a heart attack. During his heart problems, Dave’s body went into septic shock and he was induced into a coma. He had triple bypass surgery, and then suffered a knee infection, followed by removal of one of the artificial knees, adding a spacer, and then a new replacement some time later.

Currently, Dave is in Brookdale Rehabilitation Hospital, a Collier County short-term full-service rehabilitation hospital affiliated with NCH. With help from other family members and professional services, his wife Shirley is his devoted caregiver.

Shirley’s life changed as her husband’s health problems mounted. Even with help from three daughters, two of whom are nurses, plus other family and outside professional help, the road has sometimes not been easy.

Still, caregivers like Shirley, who splits her time beside her husband between Naples and Minnesota, are expected to step up to the task with a good attitude, even a smile, and keep up the good work. After all, they aren’t the sick or injured ones.

Usually, they are the first to get asked, “How is he/she (your loved one) doing, poor dear?”, when the better question may just be, “How are you doing?” for these tireless facilitators who care for their ill, rehabilitating and/or disabled loved ones.

It’s not that the infirm don’t matter; it’s just that the role of caregiver for a loved one can be as formidable a challenge as any in our lives.

Caregivers face material challenges — they must learn the ins and outs of their loved one’s needs: often an overwhelming litany of medical insurance (or none), medicines, appointments, nutrition, daily care, and — in Shirley’s case — getting the house equipped and inspected for wheelchair access.

Caregivers often face a unique emotional upheaval. Roles may be reversed; their loved one may not be able to communicate as before; they may have to drop their time and activities with other friends.

The good news is that the stress of being a caregiver can be minimized, even turned into an opportunity, say local experts. A growing number of programs and resources in Collier County are designed to help caregivers.

Shirley recently attended a new program offered at the Brookdale, a partnership with Jewish and Family Community Services of Southwest Florida (JFCS), and it is exclusive to the needs of caregivers of patients at the facility. The program is set to expand to other Collier County locations and open to the public at no charge; although JFCS is involved, the program is nonsectarian.

JFCS is also planning to open a Collier County senior center later this year in North Naples.

For Shirley, who calls herself “lucky” for all the help she has gotten, said it was the daily shortcomings that irked her.

“I am short and only weigh 110, and Dave is 6 feet plus, and over 200 pounds. I could not even push his wheelchair up the main ramp without help. And I needed someone to help me get him into the tub for a bath, and someone for the antibiotic PICC line.” Shirley doesn’t do needles.

Nor does she play golf anymore.

“I stopped playing when Dave couldn’t play the game he and I love,” Shirley said. “Today is a little bit sad for me because I am missing a grandson’s graduation in Minnesota. I won’t go without my husband.”

Shirley’s devotion is a common calling for today’s aging population, who alter their lives to fit the needs of their loved ones. Almost 30 percent of Collier County’s population is older than 65.

According to Jaclynn Faffer, CEO/President of JFCS, caregivers may experience anxiety, stress and even anger.

“And we are taught that anger is not nice to feel when we are helping a sick loved one. So some caregivers don’t express it, and end up guilty or depressed,” said Faffer.

Faffer said 40 percent of caregivers assume the role because they have no other choice, although that doesn’t mean they do it reluctantly. And 19 percent of the adult population in the U.S. provide unpaid care for someone 50 years or older.

WHAT A FEELING

Although Shirley did not report anger, she did report sadness.

“I got depressed,” said Shirley. “It just really hit me. You wonder if this is how it is always going to be. That takes time — acceptance. I actually did go on an antidepressant.”

Heather Baker of Brookdale helped coordinate the program for caregivers.

“We designed the program to address as many of the needs as we could. We realize that the role the caregiver takes on is important, and the issues are important,” said Baker.

The two-part program at Brookdale addresses issues such as “The Caregiver’s Role; Knowing What to Expect,” and “How to Be an Educated Consumer Related to Setting Up Home-Based Services,” plus more information on other resources.

Local therapist Margot Escott, a licensed clinical social worker, says a big problem is lack of resources, such as affordable day care, and some doctors no longer accepting Medicare.

Escott said, “As the caregiver’s stress escalates, they may not take care of themselves, and their decision-making process may become impaired. The No. 1 thing a caregiver can do is find support. Caregiver roles and their issues are understated.”

Local resources

To contact Collier Senior Resources, a resource for all financial levels, visit:

http://www.collierseniorresources.org/

Also:

www.jfcsswfl.org

www.nchmd.org

www.margotescott.com

http://elderaffairs.state.fl.us/doea/programs.php

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