About five years ago Madeline Sellis first noticed her partner, Thomas Rafferty, was acting differently. He would repeat the same question every couple of minutes and forget where he put things.
“He would lose things, like his watch,” said Sellis, 75. “He did things he would not normally do. That’s how it began.”
Rafferty, 76, was diagnosed with Alzheimer’s disease, the most common type of dementia. Alzheimer’s is the sixth-leading cause of death in the U.S., according to the Alzheimer’s Association, a nonprofit that works to increase care, support and research.
The biggest risk factor of Alzheimer’s is age. After 60, the risk increases every five years, said Dr. Ranjan Duara, medical director of the Mount Sinai Wien Center for Alzheimer’s Disease and Memory Disorders.
Sellis became a full-time caregiver to Rafferty. There are currently 44.4 million adult American caregivers who care for a family member or friend, according to a study by the National Alliance for Caregiving and AARP.
“Alzheimer’s has multiple victims — the patient and the caregiver, and sometimes it is more than one caregiver,” Duara said.
And just as there is help for patients with Alzheimer’s, there is help for the caregivers.
A University of Miami study showed that intervention from professionals reduces the burden on caregivers, increases their social support and prompts positive feelings about being a caregiver, said Dr. Sara Czaja, scientific director at the Center on Aging at UM’s Miller School of Medicine and professor of psychiatry and behavioral sciences.
The five-month study also proved the feasibility of using technology in helping caregivers. In the study, 120 South Florida caregivers received videophones through which they joined real-time support groups as well as clinical interventions with UM doctors. The live monthly sessions were accompanied by pre-recorded educational videos, information tips and a resource guide, said Czaja.
“The videophones allow people to participate in these activities in their own home,” Czaja said. “They feel guilty about leaving their loved one so using technology as a forum for delivery offers flexibility.”
Help to caregivers is also offered in person. While most local hospitals offer caregivers’ support groups, Leeza’s Place at Memorial Hospital Pembroke offers Japanese spiritual relaxation classes to caregivers.
Leeza’s Place opened in 2003. It is the signature program of The Leeza Gibbons Memory Foundation started by talk-show host Leeza Gibbons in memory of her mother, who was diagnosed with Alzheimer’s.
It offers help to caregivers who are taking care of a loved one with any memory disorders or progressive and chronic conditions. Leeza’s Place centers are also in California and Illinois.
“It really doesn’t matter what the disease is. All caregivers are fatigued, time starved and in need of resources,” said Bonnie Bonomo, program and outreach director at Leeza’s Place at Memorial Hospital Pembroke.
Symptoms of Alzheimer’s and other memory disorders include short-term memory loss, anxiety, irritation and paranoia, said Duara.
“All of these can cause a tremendous amount of stress to the caregiver,” he said. “Sometimes patients can ask the same question over and over. They forget the answer that was given. And that can drive a caregiver crazy. Sometimes they may shout at the patient and that may frustrate the patient even more. It sort of becomes a cycle.”
That is why helping caregivers starts with educating them about the disorder of their loved one. The more caregivers understand the disease afflicting their loved one, the better they are able to take care of them, Bonomo said.
Such was the case with Sellis, who found help at Leeza’s Place at Memorial Hospital Pembroke.
“Sometimes it gets on your nerves when he [Rafferty] is constantly asking and asking,” she said. “But you learn how to handle it. If he asks you five times, you just answer.”
Alzheimer’s is a progressive condition and while there are medications that target memory loss and behavioral changes, they do not stop the disease’s progression.
“It’s really difficult to lose someone you love a little bit at a time,” Bonomo said.
On a recent visit to Leeza’s Place, about 13 caregivers and several patients sat in a circle with their eyes closed and palms rested on their laps. Reiki Circle is a Japanese alternative medicine where practitioners transfer energy to other participants in the class through palm healing. While some at the class sunk into a deep meditation, others got up and hovered their palms on the rest of the participants in circular and linear motions.
“It centered me,” said 85-year-old Beatrice Pari, who is a caregiver to her 86-year-old husband, Paul Pari, diagnosed with Myelodysplastic syndrome, a condition that causes shortness of breath and weakness because patients’ blood cells made in the bone marrow do not become healthy red or white blood cells or healthy platelets.
Pari said her husband used to help with everything, from grocery shopping to housekeeping. But now he walks with a cane and the chores have fallen on her.
“I am not a depressed person. But I was getting depressed because I was so busy,” said Pari, who has been coming to Reiki Circle for the past seven years. “I feel so much better than when I first walked in the door.”
While Alzheimer’s patients are diagnosed according to three categories — mild, moderate and severe — people with the condition are not affected by memory loss or anxiety all the time, Bonomo said.
“You can walk in the kitchen and he might be normal or he might be diseased,” she said. “That unpredictability is so challenging for caregivers because it makes their life a roller coaster. Imagine 24/7 showing up for duty, and you just don’t know what you are going to get when you walk in the door.”
Sellis, caregiver to her partner Rafferty, who has mild to moderate Alzheimer’s, said the best lesson she has learned at Leeza’s Place is to not feel guilty if she gets upset. “I am with Thom 24/7. Leeza’s Place helped me understand that it’s OK for me to get upset. Everybody goes through that. So they emphasize not to feel guilty,” she said.
As Rafferty’s condition progressed in the past five years — he now cannot hold a conversation but still laughs and sometimes plays the clarinet — Sellis has found support from Leeza’s Place. “I have met people who have been in these same situations and down the same road I am now on,” she said. “We are getting comfort from one another.”