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Families struggle with pain of watching Alzheimer's steal away their loved ones

Record - 11/24/2019

STOCKTON -- Brenda Molini loved her children with all she had.

She took care of her daughters, Anna and Gina, and son, Mario. She cooked for them, clothed them, kept a beautiful home and provided for them. Unfortunately, the roles suddenly and cruelly changed, a fate shared by thousands of residents in San Joaquin County and elsewhere who are dealing with Alzheimer's disease.

"She was an awesome mom," Gina Molini said. "We always had everything we needed and we were loved. Mom was my whole life, and I vowed to take care of her until the end."

Brenda Molini, who worked as a paraeducator for special education students at Lodi High School, is a shadow of her former self, diagnosed some four years ago at age 58 with early-onset Alzheimer's, a devastating, uncommon form of dementia that affects people under age 65. Brenda's condition eventually deteriorated to the point where she needed round-the-clock care, which she receives along with four other patients at Abbey Covey Care Home in Stockton.

Gina, 29, and Anna, 33, both nurses, and Mario, 35, the director of finance at Lodi Memorial Hospital, said the staff has been wonderful to Brenda, who can't walk, speak or communicate openly, or feed, dress or take care of herself. At least one of Brenda's children visits daily, but they can do little more than love her and help her feel as comfortable as possible. Brenda's face lights up when she sees 20-month-old granddaughter Audrey, Anna and husband Tony Chang's daughter, but the woman they remember with such fondness and admiration is nowhere to be found.

"I miss her more now than ever in my life," said Anna Chang, who's due to deliver her and Tony's second child in December. "She's still alive but that mom is not there. It's hard when you really think about it."

Alzheimer's disease, the most common form of dementia, has been hard on millions of patients, their families and friends. The disease, discovered in 1906 by German doctor Alois Alzheimer, affects the brain and can cause a decline in memory, reasoning and thinking ability. Patients sometimes experience personality and mood changes, have difficulty performing familiar tasks and can't reason, communicate or function normally.

Some 50 million people worldwide are living with Alzheimer's and other dementia. In California, about 650,000 are diagnosed, including 11,000 in San Joaquin County, according to the Alzheimer's Association. Alzheimer's is the second-leading cause of death in the state behind heart disease. Researchers have not yet found a cure, nor pinpointed the cause, but a number of risk factors have been identified, such as age, family history, heart health, head trauma, diabetes, high blood pressure, high cholesterol, alcohol and smoking.

Though treatments and cures for certain types of cancers and other chronic diseases have been discovered, there is no treatment to halt Alzheimer's intrepid march. Dr. Maria Felicitas Dizon, chief of geriatrics/skilled nursing medicine at Kaiser Permanente, said there are two classes of medications currently approved by the Food and Drug Administration, Aricept and Namenda, that only slow the disease's progression. Medications exist that help alleviate specific symptoms, such as hallucinations, delusions or depression, but nothing can reverse the disease.

"Our hope is to slow down the progression of the disease," said Drivon, who works at Kaiser's memory clinics in Stockton and Modesto. "Even with medication, it's still a progressive disease."

Drivon said worldwide, patients who reach their 60s have an 8 to 12 percent incidence of dementia, of which a good bulk is Alzheimer's, and that in each subsequent five-year increment, the number doubles.

"It's really an epidemic," she said. "We see that in the clinic. We have a very long wait list."

Alzheimer's and related dementias are estimated to be the third-most expensive disease to treat in the United States, according to the Centers for Disease Control. The average Medicaid nursing facility expenditure per state in 2010 for individuals with Alzheimer's is estimated at $647 million, not including home- and community-based care or prescription drug costs.

"If you think about it, it should be elevated to be a public health crisis," said Janice O'Malley, community and media engagement manager with the Alzheimer's Association, a global organization in care, research and support. "Worldwide, it's a staggering number."

Behind the numbers are people dealing with the staggering financial, physical and emotional tolls of Alzheimer's, such as Elaina Weaver-Maddox, 40, who for the past 25 years has taken an active role in the care of her loved ones afflicted by Alzheimer's -- her late great-grandmother and the grandparents who raised her, Ruth Weaver and former Stockton City Councilman, the late Floyd Weaver. Elaina's great-grandmother lived with them when she was diagnosed with Alzheimer's in the 1990s. Elaina, at the time a student at Edison High School, witnessed her grandmother struggle to care for her.

"It was one of the hardest things I ever watched my grandmother go through," Elaina said. "Just the stress and adjustment, having her in the house and being alone with her and me being at school and my grandfather was working. She did her best and it was really difficult."

Elaina's late aunt, Katrina Weaver, who did not have Alzheimer's but was permanently disabled, also lived in their home.

"It was a full house," Elaina said.

In 2011, Floyd Weaver was diagnosed with Alzheimer's, then about four years later, Ruth. For a short time, both resided at Somerford Place Alzheimer's Assisted Living in Stockton before Floyd passed away in January 2016 at age 82. Katrina passed away the following year, and Ruth, 85, still lives at Somerford Place where she has made many friends and enjoys having her hair styled at the on-site beauty salon.

Elaina said seeing Ruth's faculties decline has been hard. Ruth has lost aspects of her personality that made her unique and has trouble articulating. Elaina also has noticed her grandmother's tastes have changed.

"All of a sudden, she doesn't want to eat fish, but she loves waffles and pancakes, which she despised," Elaina said with a laugh. "It's beyond my understanding, but I try to do whatever I can to make her happy, and it's hard because I know she likes it but it doesn't always apply anymore. So, I have to be as flexible as I can in my relationship with her to make her as comfortable as I can."

Elaina has spent much of her adult life driving her family to doctor's appointments, fetching prescriptions, fulfilling daily needs and handling the finances. She has a demanding position as a microbiologist at the city of Stockton'sMunicipal Utilities Department and credits her wife, Tristika Weaver-Maddox, and her co-workers for helping her manage all of her responsibilities.

"It's not easy navigating everything from medical bills to everything else that goes on," Elaina said.

Elaina said she can't help but be concerned about her future, given heredity has been identified as a risk factor.

"I'm pretty nervous about it," Elaina said. "I have so many family members that have it. You can see it passed down through the generations. It's just scary. It really is."

Gina Molini, 32, said she has put her life somewhat on hold to care for her mother but has no regrets. She contemplates whether stress or emotional trauma in her mother's background manifested as Alzheimer's. Brenda was widowed in 1994 when her husband and the father of her children, Simon Molini, died of colon cancer at age 51, and her father passed away when she was 12 years old.

"If you ask me, maybe that had something to do with it," Gina said. "I think all of that really was stressful on her."

Teresa Mandella said caregivers of Alzheimer's patients must pay attention to their own health. She said she knows of many cases in which patients have outlived their caregivers. Teresa knows all too well what it takes. She has been a frequent visitor to Somerford Place since her husband of 37 years, Frank, became a resident more than two years ago. Frank was diagnosed with Alzheimer's in 2010 at age 61, though symptoms began to appear several years prior. Frank enjoyed an active lifestyle before he steadily declined and eventually required professional care.

Outside the door to his private room hangs a memories box that displays photos from happier times and a tennis ball. Teresa and Frank, who don't have children, enjoyed playing tennis together. For Frank, those days are in the past.

During a recent visit to Somerford, which has a capacity of 60 residents and a staff of dedicated individuals led by executive director Leslie Oranges Anderson, Frank sat quietly along with more than a dozen residents inside the activities room, while a man played upbeat tunes on an accordion. A few residents danced and smiled appearing almost childlike, while others muttered to themselves or wore blank expressions.

"I call it a long journey," Teresa said softly, "a long goodbye."

Mandella, 67, said she would drown in sorrow if she allowed herself to dwell on what she and Frank, 70, have missed. Instead, the retired financial advisor has been a force behind Alzheimer's awareness as co-chair of the Stockton Walk to End Alzheimer's. The seventh annual event recently held at University of the Pacific, one of 600 conducted throughout the country, raised more than $200,000, of which 80 percent goes to fund research. November is Alzheimer's Awareness Month.

"I feel like I'm in control of my actions to make a difference with this disease," Teresa said. "That's why I'm getting involved to make a difference and do more research."

Teresa said he has learned much about herself on her long journey.

"I've gained so much more patience and compassion," she said. "From a negative has come kind of a positive for me."

Mandella and Weaver-Maddox said they are thankful they purchased long-term health care insurance policies that cover the costs related to Frank's and Ruth's care. Brenda Molini's costs are covered by Medicare and out-of-pocket. There are options, including the Stockton Program of All-Inclusive Care for the Elderly (PACE), which provides services in participants' homes, in the community and at the Stockton PACE Center free to those with Medi-Cal or a combination of Medicare and Medi-Cal. Drivon said Kaiser plans to expand its memory clinic.

"There is a huge need for this," she said.

The need for caregivers and services will increase as the Baby Boomer generation ages. According to the CDC, there are now more than 10 million family members providing unpaid care to a person with a cognitive impairment, a memory problem or a disorder like Alzheimer's or other dementia. In 2009, it was estimated that 12.5 billion hours of unpaid care were provided at a value of $144 billion.

Individuals, families and caregivers in need of help can turn to the Alzheimer's Association's website, alz.org, or 24-hour helpline, (800) 272-3900, or join any number of online support groups or attend workshops.

Contact reporter Bob Highfill at (209) 546-8277 or jhighfill@recordnet.com. Follow him on Twitter @bobhighfill.

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