Emotional toll on caregivers of loved ones with dementia

A man in his 60s pulls into the parking lot at a Marin County fitness center. He is participating in a study about the benefits of exercise for people caring for loved ones with dementia, and this requires him to work out. But because he spends so much time “worrying about the present, worrying about the future and mourning the past all at once” — an emotional state common to so many living with dementia in the family — he is exhausted. More often than not, he naps in his car before heading into the gym. That’s how Louis starts his day.

For four years, Louis has watched early-onset Alzheimer’s disease steal his wife.

Maya Bushkova and Marat Farberov in 2015

She was in her late 60s when her diagnosis was confirmed in 2014, and Louis retired so he could take care of her. Today, she can’t work the stove, loses words before reaching the end of a sentence, can’t always get the key in the door lock, finds the shower knobs confusing, can’t retrieve voicemail and needs her husband to work the TV remote.

“It’s just going to get worse, and this is not how I thought our retirement years would go,” said Louis (not his real name). “I know I am not the only one in this situation. My wife and I attend separate support groups offered by the Alzheimer’s Association, so I have met other caregivers. That’s what they call us, but we are more like lifeguards. We stand there and watch what’s going on.”

The couple’s once-active social life is over and the phone almost never rings. A few times, well-meaning friends have made insensitive remarks, and Louis has opted not to get back in touch with them. When someone does ask Louis how it’s going, he is reluctant to say just how heavy is the emotional burden he bears.

This is what dementia looks like up close.

Louis is among the estimated 1.1 million Californians caring for 600,000 people with Alzheimer’s disease and other types of dementia in the state, according to a report by the Alzheimer’s Association.

Nationally, 5.4 million Americans have been diagnosed with Alzheimer’s. By 2050, when millions of baby boomers reach the greatest risk age — 85 and older — new cases are predicted to triple, unless a cure or more effective treatments are found.

Jewish agencies and other institutions in the Bay Area are dealing with the rapidly increasing numbers of people diagnosed with dementia by putting new trends in Alzheimer’s care into practice. (For information on how Jewish agencies are adapting, see Part 1 of this series published June 17, www.tinyurl.com/jweekly-alzheimers-part1.) Here are stories of people experiencing firsthand the pain of Alzheimer’s.

“Life as we knew it does not exist and never will again,” says Irina Graham, 41, of Morgan Hill. Her voice breaks and she takes a minute to compose herself.  “My parents were everything to me.”

Klaus Marcus and his granddaughter Kristen Heiden

Graham’s father, Marat Farberov, 60, was diagnosed three years ago with early onset Lewy body dementia, a progressive, neurodegenerative dementia closely associated with Parkinson’s disease. Alzheimer’s disease is often part of the mix. Maya Bushkova, Graham’s mother, is caring for her husband at home.

Farberov first showed signs of illness about a dozen years ago when he began to experience vivid dreams and tremors. “My mom worried about it, but at the time, my father was playing tennis five days a week, driving a cab and living a full life,” says Graham, who works for Seagate Technology in Cupertino.

A few years later, after Farberov lost his mother and had a bad car accident, he showed signs of depression and anxiety. When he saw a doctor, he was told that “everyone has depression,” his daughter says. She did not accept that, and made more appointments with different doctors.

“Today my father is not mobile. He sleeps most of the day and is up all night, and he does not recognize my mother,” Graham says. “The average time from onset to the end can be between seven and 14 years, and every day my dad is experiencing his death sentence, waiting for it to happen, while my mother watches.”

S.F.-based Jewish Family and Children’s Services provides respite care four hours a week and Graham visits her parents in San Francisco every weekend. “My father was my heart and soul. He was supposed to teach my kids to play tennis and to play music. And he can’t,” she says. “Because my mom has been bound to her home for three years now, she has lost her youth, her ability to work and all her friends.”

Vadim Sakovich visits his mom, Nora, at the Jewish Home in San Francisco

Graham’s parents, who live in San Francisco, are not old enough to receive any help at all from Medicare. To qualify for Medi-Cal, they had to stop working and sell their home and their car.

“You won’t get help unless you lose everything, and everyone in the family suffers,” Graham says. “And no matter how many times you try to tell people what this is like, no one can understand it until they have experienced it.”

This year, caring for people with Alzheimer’s will cost American society an estimated $236 billion. Medicare, which does not cover many aspects of care for the disease, will pay for less than half of that.

At 87, Klaus Marcus told his doctor that he was becoming forgetful. After ordering a scan, his doctor told him it was probably dementia and handed him a brochure about what to expect. A widower, Marcus reported this to his granddaughter, Kristen Heiden, his closest relative.

“Part of me was concerned and part of me didn’t know anything about dementia,” Heiden recalls. “He was always so independent, driving to swimming every day and the grocery store. Then one day about a year later, his neighbors called to tell me that my grandfather had let a pot burn on the stove and had heated food wrapped in foil in the microwave. It blew up.”

Nora Sakovich with husband Vladimir in 1944

Heiden immediately drove from her home in Los Angeles, where she is a television director, to her grandfather’s home in San Francisco. Marcus and his family were refugees from Nazi Germany, fleeing their homeland after Kristallnacht. They landed in Shanghai, where they lived in the Japanese-imposed ghetto before finally making it to the United States. Marcus and his wife, who died eight years ago, enjoyed traveling, especially cruises, Heiden said.

“Opi — that was my name for him — parented me when I was a child, spoiled me rotten. I was the daughter he never had,” Heiden says. “He was very stylish and liked shopping. He worked as a waiter at the Fairmont Hotel and at Tarantino’s at Fisherman’s Wharf.”

Once Marcus’ memory loss affected his ability to function, Heiden turned to JFCS. The agency, which runs a Center for Dementia Care as part of its Seniors At Home program, helped her find a part-time caregiver, arranged for meal delivery and assigned a social worker who helped Marcus coordinate visits to the swimming pool with a friend.

However, Marcus’ condition continued to deteriorate. His neighbors reported to Heiden that he had been seen driving late at night. He called the police to say an imaginary girlfriend was missing. He stopped answering Heiden’s daily phone calls.

She moved in with him to try to help. Marcus started hallucinating around the clock. “He was screaming all the time, and he wouldn’t eat or sleep or take his medications,” she recalls. Last July, JFCS found a place for him in a memory care unit. “He enjoyed his life there,” Heiden says, “so at least that part was a happy ending.”

Marcus passed away March 23 at the age of 90.

“He recognized me up until the day he died,” his granddaughter says.

Nora Sakovich, a native of Kiev, served in the Soviet army in World War II as a meteorologist. She flew on small plywood planes to gather weather data, and executed several parachute jumps. Her father and brother were killed at the front in 1941. After the war, she trained as a paramedic and later worked for 25 years as an education director for a large kindergarten.

That was then.

Today, Sakovich, 93, lives in the memory care unit at the Jewish Home in San Francisco. Her son, Vadim Sakovich, says his mother first experienced memory problems six years ago. “After that, it was a gradual process of degradation,” he says. “She does not remember what happened 15 minutes ago and her long-term memory is very bad, too.”

Sakovich, a retired programmer who lives in San Francisco, said the decision to place his mother in a memory care unit was difficult for the family “in spite of the excellent care” they knew it provides. He is not yet ready to talk about the emotional challenges he has faced as his mother’s mental capacity has declined.

He did say that until recently, she understood some jokes and smiled when she heard them. And she still responds to the music of her youth. “It is pretty strange that along with this serious memory problem, she remembers many old songs and can sing not only the melody but also some words,” Sakovich says.

Rita Clancy

The music his mother enjoys consists of more than 100 popular Russian and Ukrainian songs from 1950 to 1995. Sakovich assembled the playlist on an MP3 about thee years ago and refreshes it every six months or so. He also donated MP3 players and headphones for other residents.

Inspired by the gift, recreation therapists at the Jewish Home created a program called iEngage based on a similar endeavor at Music & Memory, a nonprofit that uses digital technology products “to enhance the lives of the elderly or infirm through music.” According to the Alzheimer’s Association, music can do more than enhance their lives: Studies show that music “may reduce agitation and improve behavioral issues common in the middle-stages of the disease,” and “provides a way to connect, even after verbal communication has become difficult” in the later stages.

About 30 Jewish Home residents participate in the program, said Odile Lavault, and caregivers at the Jewish Home work hard to determine the residents’ favorite styles of music. “A typical user here is someone diagnosed with memory loss or dementia and people who tend to be isolated due to difficulty communicating, people whose worlds have shrunk,” she said.

Though Nora Sakovich is not the person she used to be, making it possible for her to listen to music from her past was at least something her son could do to help. “I only tried to support what she loved,” he says.

Every 67 seconds, someone in the U.S. is diagnosed with dementia. Yet because screening for cognitive impairment is not yet the norm in clinical practices, that figure likely is an underrepresentation, suggests Dr. Christine Ritchie, a UCSF professor of clinical research and aging based at the Jewish Home.

“We have a significant issue around underdiagnosis, and this is a huge public health issue,” Ritchie said. Complicating the diagnoses: There are different kinds of dementia, and people who develop it may also have other illnesses. That’s the bad news.

Now the good.

“Research may soon make it possible to delay the progression of Alzheimer’s or postpone it so individuals do not end up with cognitive impairment,” notes Elizabeth Edgerly, chief program officer for the Northern California and Northern Nevada chapter of the Alzheimer’s Association in San Jose. “There is a lot of optimism in the field.”

Edgerly added that five years ago, the city and county of San Francisco created a strategy for dementia care. “It’s a thoughtful plan for helping individuals and health care providers in the city, a broad picture of what we need to do to be better,” she says. “Other cities and counties in the Bay Area also are taking on dementia, and there is a national plan for treatment and care, a bipartisan effort. I have tremendous hope that things will change for the better.”

Local Jewish agencies and institutions also are working to improve the lives of people with dementia — and those who care for them. “We walk the journey with them,” says Rita Clancy, director of adult services at Jewish Family & Community Services East Bay. “We can help with everything from how to keep a kosher kitchen to helping people continue with their spirituality.”

Clancy noted that about 56 percent of older adult clients who come to JFCS East Bay for help have some kind of cognitive impairment. “We use a person-centered approach in our work and care providers are coached with this approach,” she says.

Lavault, a life enrichment coordinator at the Jewish Home, elaborated a bit on the approach. “In the past, there were nursing homes and a lot of medical intervention with people with dementia, and it was a disaster,” she said. “In that model, the schedules, the food, even the buildings — all were organized for the comfort of workers.

“Person-centered care puts the comfort of the resident first.”

Lavault added that acknowledgment of the spiritual nature of dementia also is growing among professionals in the memory care field. “People with dementia live in the moment. They only do one thing at a time, and they live simple lives, in a place of acceptance,” she said.

“I believe this population is sending our society a message — and we should listen.”


Easing the burden for caregivers

Around 600,000 Californians and 5.4 million Americans are living with Alzheimer’s disease. In 2015, 15 million caregivers and family members provided 18.1 billion hours of unpaid care, often cutting back on their own food, transportation and medical care costs.

Providing that care comes with an emotional cost as well. “It can be an isolating experience when it feels like others cannot comprehend your grief and loss,” said Laura Sigura, a care manager for Seniors At Home, a division of S.F.-based Jewish Family and Children’s Services.

Sigura, who works in JFCS’ Palo Alto office, offers five steps to help friends and family members understand the pain and grief that are part of living with a loved one with Alzheimer’s disease.

1. Invite questions about the disease and what you’re experiencing. Fear and ignorance may make people stay away — they may not know what to say, or worry that what they say will offend you. 

2. Ask for help that you need. When you ask directly and specifically, people often are willing to step in and help, whether it’s taking on a chore or just listening to how you feel.

3. Have compassion for those who don’t get it. Judaism refers to this as rachamim (compassion). You may come across people who do not know how to support you, or who say the wrong thing out of ignorance. Educate them.

4. Seek out other people on a similar journey through support groups, synagogue caring communities or agencies that can help. JFCS’ Seniors At Home provides practical and emotional support for caregivers. Also, the Alzheimer’s Association (www.alz.org) and Family Caregiver Alliance (www.caregiver.org) both offer support groups for families caring for a loved one with dementia. 

5. Seek out professional help from a psychologist, social worker or rabbi who will provide you with a safe space to explore the range of emotions you experience. Local Jewish agencies and others also offer individual and family counseling to help explore your thoughts and feelings, manage the disease process and overcome challenges in communication, caregiving and bereavement. — patricia corrigan

Patricia Corrigan

Patricia Corrigan is a longtime newspaper reporter, book author and freelance writer based in San Francisco.