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Time to Care: Families find more options to keep elderly parents at home

By Jason Lesley
Coastal Observer

Dot Matthews of DeBordieu says the time has come for her to care for her 97-year-old mother.

Jo Cerami suffers from dementia and needs her daughter and son-in-law, John, now.

She has gone from being the caregiver to the recipient. After her husband died in 1976, Jo moved in with Dot and John in Florence to help care for their seven children. “It was me who needed her at that time,” Dot said. “I had my own company, working 24/7. John was working. We needed help. I would stop in at her house, and she’d be crying. She had nothing to do and didn’t have a whole lot of friends. I asked her if she would come and help me so there would be somebody there with the kids when they got home from school. Now she needs me. Turnabout is fair play.”

Dot is granting her mom the wish that almost every aging person has: to remain at home. It hasn’t been easy. “Dementia comes on very slowly,” Dot said. “I didn’t realize what it was. My friends noticed it before I did.”

Through no fault of their own, people suffering from dementia progress from forgetful to confused to angry. Dot found her mother cooking in the kitchen in the middle of the night. Now an alarm on Jo’s bedroom door rings in the master bedroom if she opens it. Dot tries to keep her mother’s surroundings and routine constant. “Do one thing different,” Dot said, “and she gets upset.” Jo didn’t like it when a television set was moved from her bedroom to a porch. “She knew something was missing from her room, and she said, ‘I want it back. You took my box,’” Dot said. And the constant worry with an elderly person is falling. A broken hip is often the beginning of the end.

Caring for an elderly person is emotionally draining, exhausting and demanding, Dot said.

That helps explain why home care is such a growth industry. A study by the Pew Research Center found that the number of caregivers in the U.S. increased by 10 percent in the last three years. Jo has a caregiver visit three times a week to bathe her and change her bed. Once a week, a nurse checks her vital signs.

“I think she’s happier at home,” Dot said. “It’s a hard situation. I would like to think I’m doing everything I can to make her last few years happy and comfortable.”

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Claudia Berner wasn’t able to care for her father when he began showing signs of Alzheimer’s disease.

Walter and Muriel Berner had retired to Wachesaw Plantation, and their daughter was living and working in New Jersey.

“I talked to him on the phone,” Claudia said, “and he’d say everything’s great. But I’d come down and see little stuff. He would always wear the same outfit, and they didn’t go out as much. He would use the telephone to try and change channels on the TV. In his mind, he was still doing everything he normally did.

“When he understood he had dementia, Mom asked if he was afraid. He said he wasn’t, but he made me promise to keep him in the house. I said that as long as he was safe he could live at home. When I found out that my mom was giving him showers, I said that’s not safe any more. He’s 6-3 and she’s 5-7. They both could have fallen in the shower.”

Claudia went to work to find a caregiver for her father but couldn’t get comfortable with anyone. “We went on a quest to make sure there was somebody in the house I could trust giving me information on a day-to-day basis,” she said. “I didn’t get to see the changes in my dad.”

Through a number of agencies and by trial and error, Claudia eventually hired Barry Weber, a registered nurse, to care for her father. “Barry looks a lot like my brother,” she said. “It was easy for my dad to open his arms and feel safe with Barry. This wasn’t a strange person. It took my mother a lot longer to trust him. She would follow him around the house when he was doing anything with my dad until he finally said, ‘Mrs. Berner, you have to stop hovering. I can’t do my job.’ She finally started to feel better. Barry did a lot of stuff, making sure we were engaging my dad mentally, physically and spiritually. The week before I would come down Barry showed him my picture. I looked familiar, even though he couldn’t remember my name.”

From her own experience, Claudia realized the need for home health care on the Waccamaw Neck. She and Weber started their own business, Grand Strand Homewatch CareGivers with an office on Business 17.

“I saw a big need,” Claudia said. “People need some light housekeeping because they can fall and get hurt stepping over things. If the kitchen and bathrooms are not clean, there’s infections. We want to make sure they are safe and comfortable in their homes. Transportation is the same thing. We take them to the doctor’s office. I had Barry sending me pictures, so we like our caregivers to do that. We have a client that we take to play golf once a week. We are trying aroma therapy, massage, chair yoga. We want people to continue to live with the dignity and quality they deserve.”

Claudia said people should take a page from Native Americans regarding elders. “We’ve become a disposable society. We should treasure our elders. The things that start taking elders down are loss of purpose, boredom and loneliness. If we can bring that into a house, they are going to be so much more healthy. We’re not going to stop Alzheimer’s or cure dementia, but you can make the end of their lives so much more pleasant by allowing them dignity.”

Betty Beaty likes meeting new people and caring for them. She joined Homewatch CareGivers after working privately and for a nursing home and DHEC as a home caregiver. She has had memorable experiences caring for Genevieve “Sister” Peterkin of Murrels Inlet and Jackie Nelson, a popular local newspaper columnist.

“You try and let people do as much as they can,” Betty said. “You help them where they need physical help. You don’t want to take their independence away from them. You want them to keep their sense of pride. A lot of people don’t like you to do things for them. Let them lead and you follow.”

Betty said she was more of a daily companion to Sister, who eventually had round-the-clock nurses before she died. Jackie Nelson asked Betty to be sure to clean her back porch. The next day, relatives found her dead there in a chair facing the creek.

Those two are not typical patients. People suffering dementia can be difficult, Betty said. “They get trapped in their own minds,” she said. “They know better, yet they can’t do better. It’s hard for them to come to grips, and it’s hard to work with them as caregivers, too.”

Betty remembers one dementia patient who would try and bite her. “In her lucid moments, she was one of the sweetest ladies you ever want to be around. I just loved her to death,” she said. “You know that’s not her, and when she’d get back in her right mind, she’d say she was sorry. They know what they are doing, but they can’t help themselves.”

Betty said patients who accept their limitations are happier. Walter Berner voluntarily stopped driving. Jo Cerami has stopped cooking at night. “In their mind they can do things like they used to,” Betty said. “In the caregiving business, you hope and pray you don’t get to this stage.”

Raising the profile of family care

Georgetown County Council has proclaimed November “National Family Caregivers Month.”

The nation’s 66 million caregivers have been recognized every November since President Clinton signed the first presidential proclamation in 1997.

Caregivers provide the equivalent of $450 billion worth of care to their adult parents and other loved ones, an amount that makes caregivers one of the largest and most overlooked pillars of the U.S. health care system, according to a July 2011 report by the AARP Public Policy Institute.

Most caregivers are not professionals. Family caregivers, the county’s proclamation says, are “loving daughters and sons, spouses and partners, parents, siblings and friends throughout every part of our community who act out of profound love, dedication and commitment in caring for their loved ones.” They provide a variety of services including administering medication, assisting with daily tasks such as personal care, meal planning and preparation, meeting with health care providers, daily supervision and activity (especially when there is cognitive impairment such as Alzheimer’s disease), coordinating treatment regimens and schedules, helping with managing the financial and administrative aspects of medical care, health insurance and more.

Grand Strand Homewatch CareGivers of Murrells Inlet will host a forum “A Community in Caring” Nov. 7 at Inlet Square Mall from 11 a.m. to 7 p.m. Festivities will include a light lunch, and participants will be provided free information from a variety of local health-related services. County Council Member Jerry Oakley will read the proclamation approved this week.

Area caregivers nominated as “Extraordinary Caregivers” will be recognized.

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