Phone Line Offers Expert Advice to People Caring for Alzheimer’s Patients

Andrew Kitchenman | February 27, 2015 | Health Care
Highland Park man among those who found support, advice through Care2Caregivers from Rutgers Behavioral Health Care

Credit: Rutgers University/Nick Romanenko
Elvis Gardin of Highland Park, with his mother Dilcie Gardin, gets support from Care2Caregivers.
Few caregivers can match Elvis Gardin’s dedication to helping his mother, who has Alzheimer’s disease. He moved the 88-year-old Dilcie Gardin into his Highland Park home in December 2013, when he noticed a decline in her mental and physical health after she had spent three years in a nursing home.

Since then, he’s been with her most of the time, helping her complete basic tasks, taking walks with her and engaging her in his daily life — and has seen a marked improvement in her health. A vegan chef and wellness instructor, Elvis Gardin had many of the skills needed to help his mother, but he also lacked experience in facing many of the daunting challenges and decisions he would encounter.

That’s where a new statewide phone service has proven to be invaluable. The service, Care2Caregivers, allows those who are caring for residents with Alzheimer’s or dementia to talk with trained specialists who have both personal and professional experience as caregivers. The service, launched last August through a grant from the state Department of Human Services, connects caregivers with support groups, counseling, and other nearby services.

Gardin has used Care2Caregivers peer specialist Barbara Surina as a source of advice and a guide through many of the challenges he’s facing with his mother.

“It’s like a real isolated battle,” he said of his experience before being connected with Care2Caregivers. “People would always say how’s your mother? She’s fine. I’m the one who’s about to jump out of a building.”

Rutgers Behavioral Health Care operates the program, which fields a wide range of questions.

“Somebody might call and say, ‘My mom just got diagnosed with Alzheimer’s disease and I’m looking for a day program,’ or ‘Something’s wrong with dad’s memory. I don’t know what to do,’ ” said program coordinator Mary Catherine Lundquist.

Lundquist noted that many caregivers are the elderly spouses and siblings of the patients.

“There are so many resources out there, but caregivers often are not tech savvy,” she said. “We hear their stories. We listen to the narrative and try to figure out what’s most important to them.”

Then the specialists will take the extra step. For example, instead of just giving a caregiver a phone number to ask about a local peer-support group, the specialists will make the call themselves and see if the local group is still active.

“We really try to pave the way and make it easier on them, because caregivers often are completely overwhelmed with everything that they have to do,” Lundquist said.

Care2Caregivers have contacts with a wide range of resources: home healthcare agencies, veterans’ benefits, financial assistance for low-income residents, and the many programs available at Rutgers’ Comprehensive Services on Aging Institute.

Lundquist said it was essential that the specialists had both personal and professional experience. They’ve been trained to take four steps with every caregiver: 1) build a connection; 2) gather and assess the situation, including ensuring that the situation isn’t dangerous or abusive; 3) develop case-management goals identified by the caller; and 4) support the caller’s resiliency by recognizing and praising their work.

“The person on the other end of the line understands what you’re going through,” she said. They also make followup phone calls to the caregivers to check to see how they’re doing.

Their work isn’t limited to family caregivers. They’ll also help professionals who are providing care but may not be aware of all of the resources available.

Gardin said he knew he had to bring his mother home when he saw several things that disturbed him.

“She began to lose a dramatic amount of weight and it was really a concern for me,” he said. “I’ve always been hands-on in my mother’s life so it was very disconcerting not having full care of her.”

Staff members at the nursing home said her appetite had declined because she was in an advanced stage of Alzheimer’s, but “whenever I would bring fruit smoothies or veggie smoothies up to her, she would devour them like an alley cat.”

Finally, he noticed her using her walker to wait by the door, “looking through the window at the parking lot, like she was waiting for a ride to get out of there,” he said.

After bringing her home, he said a healthier, plant-based diet resolved some of the digestive problems she experienced. He also worked to moisturize her skin, do her hair and give her manicures and pedicures.

“I want her to look in the mirror and see herself and have the dignity she always had,” he said.

He keeps up a constant conversation with her to keep her engaged, asking her to help him so that she remains present in the moment.

“She was becoming very zombified at the facility and now her eye-tracking is right on point because she looks directly at the person who was speaking to her,” he said.

While he gave up on what he said was a great career in New York, he said: “My mom is in the fourth quarter of her life with minutes on the clock. As much as she put up with my stuff when I was growing up, I think I can lend her several years.”

She now walks with him, talks with him and “has not had so much as had the sniffles” in the past 15 months.

But all this work was taking a toll on Gardin.

“I was in fight or flight mode, man. I burned the candles at both ends,” he said — which is where Care2Caregivers came in.

Surina walked Gardin through what she and others had gone through. “We have these long, long conversations and we cover so much,” Gardin said.

She’s also talked with him about decisions involving hospice for when the time comes, and let him know she’ll be there for him after his mother dies.

“He is just amazing and for him to do what he did and take his mother out of a facility and nurture and put her back to as good as she could be and enjoy her is just so uplifting,” said Surina, who started working with residents with dementia after helping her own father for 11 years before his death eight years ago.

“So many times these people don’t know where to turn, they don’t know who to talk to, they don’t know if they’re doing the right thing,” Surina said.

She said Gardin’s example is an inspiration to others.

“I’m not saying you have to do what Elvis did, but you have the capability of making a difference,” she said.

Gardin said Care2Caregivers makes it easier to follow the path he started when he took his mother home, against the advice of facility staff.

“If I had listened to them, I would have been placing four dozen roses on her grave on her birthday in January, instead of placing them in front of her and seeing her face light up,” he said.

The phone number for Care2Caregivers is (800) 424-2494. For more information, visit