Local News

Caring for a spouse with dementia takes a toll and requires help

SEBRING - Until recently, the daily ritual began around 5:30 a.m., when Clarabelle Moore started to stir and her husband, Jack, got up from bed, dressed and headed to the kitchen to fix his wife a bowl of oatmeal.

He would then head back to the bedroom, gingerly help Clara get up, get on a gown or robe and furtively take her to the bathroom to help her with a shower, hygiene and get something to wear for her activities for the rest of the day: sitting or reclining, sleeping, eating and with the TV on, gazing into a void of oblivion.

Jack is a spry 90-year-old World War II veteran and retired weapons supervisor for the U.S. Department of Defense. His wife was an active mother involved in church, social and civic activities who is now living in the severe stages of Alzheimer's disease and dementia. He is determined to give his wife of 64 years the best care, comfort and nurturing possible, despite the effort and toll it takes on himself and his family, and he wants other elderly couples in the same situation to know they're not alone and there is plenty of assistance to help make it day to day.

In June 2013, about a year after Clara was screened for pancreatic cancer, usually vibrant and alert, she began to complain about dizziness and her blood pressure began to drop. One afternoon that month, she collapsed on the living room floor and was sent to Florida Hospital Heartland, released a day later but kept falling. Aug. 16, despite having a bell attached to her bed in case she began to sleepwalk, she got up again and broke her wrist and shoulder.

"I thought she was a goner and surely she's developing Alzheimers," said Jack, a veteran of Pearl Harbor. "I had a nurse on call that quit. They said this is a good time for you to get some relief. Send her to (Good Shepherd) Hospice and they can take care of her. I said, 'Fine, let's do that.'"

In addition, Jack hired a case manager and caretaker from NU-HOPE Elder Care Services, Sebring, and between the two services has been able to keep a rein on the love of his life for six decades and is now able to have some breathing-room time for himself.

Clara's NU-HOPE case manager, Denise Hamilton, said Jack is now able to take eight hours Wednesdays and six hours Mondays and Fridays while she tends to Clara. Among her homemaking duties are cleaning the house and laundry as well as delivering pre-made five lunches or dinners five times a week.

She said in her 14 years working as a case manager, the Moores' situation is not unique around Highlands County.

According to the U.S. Census Bureau, in 2012, people 65 years and over accounted for 33 percent of the state's population of 19.5 million people, roughly 6.4 million. In Highlands County, 18.2 percent - about 17,700 of 98.100 residents - are over 65.

Statistics from The Florida Department of Elder Affairs in 2010-11 showed statewide more than 450,000 Floridians are diagnosed with Alzheimer's or a related cognitive disorder and should reach 590,000 within the next 20 years. Of those, 70 percent, like Clara, are cared for at home by about 640,000 caregivers.

Studies by Elder Affairs suggests that pharmacological treatments and caregiver interventions can delay entry into nursing homes and potentially reduce Medicaid costs, postponing nursing home placement and saving $30,000 in state dollars per person, per year.

"He (Jack) is an extreme case, though, and he was overwhelmed. I felt like he was about to give up, he couldn't even leave to go shopping," Hamilton said. "Around the (Highlands) county, we see this a lot and they wouldn't be able to do it without in-house service. This is what we're all about, providing in-house services so they can continue to be able to live in their homes."

Ingra Gardner, NU-HOPE'S executive director for the past three years, said her company provides in-home respite to over 40 caregivers in Highlands County, with 3,381 hours provided in the Alzheimer's Disease Initiative Program alone.

She said NU-HOPE currently serves about 45 households in Highlands County and caregivers find situations like the Moores, upper-aged seniors caring for peers, "far too often."

NU-HOPE, based in Sebring, also serves Hardee County. Gardner said the company currently has 11 caregivers for over 60; 14 for those 60 to 74; 10 caregivers for 75 to 84; and 6 caregivers for 85 and over.

"He (Jack) called us on an almost daily basis, he was definitely overstressed," she said. "Due to his difficulty in understanding the challenges, it could have escalated into elder abuse and we helped prevent that by providing respite."

While he sat at his kitchen table in Country Club of Sebring home, Jack wistfully spoke about his wife of yore: cleaning, having fun, chatting and laughing. Behind him, Clara rested on a bed in the living room, her alert-but-calming eyes seemingly gazing at a reality no longer there. He said he recently discussed with one of his three sons, Carl of Columbus, Ohio, about taking her into a extended-care facility, or nursing home, or keeping her at home. It didn't take long for them to make a decision.

"We said, 'If she's going to die, let's have her die in the house.' I knew after 64 years of marriage I could read her mind and that's what she would want." said Jack. "I felt like I could keep her here and with some help to take care of her."

At the Moores', Carrie Cruser, a caregiver with Comfort Keepers senior care, Sebring, had gotten Clara ready for the day Friday. Jack, who spends much of his free time shopping for necessities for he and his wife, said he just wants other older couples to know they're not alone in the struggle to maintain their vows of "for better or worse." He said since he had found help, his life load had gotten easier.

"Everyone talks about heart disease, cancer, but hardly any publicity goes to dementia or Alzheimers," he said. "Seeing her so frail and just lying there, that's what's heartbreaking. I just take it each day at a time and if I just get a smile from her, that's better than nothing."

For information, see www.chaptershealth.org/Services/Hospice or www.elderaffairs.state.fl.us.


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