|By Paul Kleyman
New America Media
Posted: Apr 11, 2011
MOUNTAIN VIEW, Calif.—When brothers Marco and Oscar Garcia made the unusual decision several years ago to merge their two households and move in with their elderly parents, they had no idea how challenging it would be.
Their father’s Alzheimer’s disease had progressed to a worrisome level and their mother’s decline from diabetes and heart disease made it difficult for her to care for them both. “Believe me, it has not been easy, nor has it been fun,” said Marco Garcia.
“I don’t want to live a life of regret,” said older brother Oscar, “for not having been there for my parents to provide for them and give our kids the chance to be around Grandma and Grandpa to create those memories.”
For the adult children and grandchildren of Felipe Garcia, 79, those memories may be shaped by his Aztec-inspired art or the aroma of his specially grilled goat.
As the family sat at the dinner table recently, members described their caregiving challenges since Felipe was diagnosed with Alzheimer’s.
Like many Latino families confronting Alzheimer’s in a loved one, they’ve experienced shame and fear and kept Felipe’s condition secret. They’ve also felt the disapproval of relatives and neighbors, who are clueless about the grinding daily realities of living with Alzheimer’s.
Alzheimer’s is incurable and the number of diagnosed cases will double in the United States by 2030, according to a new report from the Alzheimer’s Association and the California Department of Health and Human Services. Among Latinos and Asians, cases of Alzheimer’s and related dementias will triple.
The new report, “California’s State Plan For Alzheimer’s Disease: An Action Plan for 2011-2021”, says the state is ill-prepared to handle the demands of Alzheimer’s on families, community health systems, businesses suffering lost productivity from employee care-giving duties, and a state budget destined to be overwhelmed, unless California responds on multiple fronts. (See the first articles in this series).
Because the brain-strangling effects of Alzheimer’s remain unseen, sufferers of the disease often don’t get the compassion or care they need, according to the report. “This is compounded by discrimination against older adults, bias against people with cognitive impairments and lack of awareness, which has fueled continued stigmatization of people living with Alzheimer’s disease and their families,” it states.
The Day Everything Changed
The Garcias admit that they reacted to Felipe’s diagnosis eight years ago with fear and misunderstanding. Marco, 36, recalled the day everything changed. That change would bring him and Oscar, six years older, very close together for the first time, they said.
After neighbors reported that Felipe had wandered lost and confused into their driveway, Marco, a Mountain View police officer, took his dad to the doctor, acting as a Spanish-English translator. That day, Felipe was diagnosed with Alzheimer’s.
“I was pretty upset,” said Marco. “I didn’t know if we were going to have to lock Dad up in his room because he might get lost.” His first thought was of how Ronald Reagan seemed to disappear from public view soon after his Alzheimer’s diagnosis.
Oscar, now president and CEO of the Mountain View Chamber of Commerce, had already seen his father survive a heart attack and bypass operation. But this was different. Alzheimer’s, which typically lasts from three to 20 years after diagnosis, has been called “the slow goodbye,” said Oscar, who is now on the board of the Alzheimer’s Association’s Northern California chapter.
Initially, Marco’s wife, Elena, volunteered to help manage daily medications for Felipe and his wife, Manuela, who had increasing trouble cooking and keeping house. The growing demands of Felipe’s Alzheimer’s care and Manuela’s own health problems emerged just as the parents’ rental house came up for sale. That precipitated the sons’ decision to purchase the property and rebuild the house with six bedrooms and a basement, large enough for all three generations.
“I think it’s hard for others to understand,” Elena said. “It’s a decision we all made together in order to share that responsibility and be able to support each other.”
The Garcias briefly considered placing their parents in assisted living but decided against it. “Knowing how many friends and relatives Mom and Dad had over the years,” Marco said,” to put them away would be like a jail sentence.”
A Family Secret
The Garcia’s made another decision they now regret: to keep Felipe’s Alzheimer’s a secret.
“I believe that within the Latino community there are still a lot of unknowns or misperceptions about what Alzheimer’s is,” Oscar said. “Our feelings at first were of being shocked and scared.”
Because Latino families often react fearfully, Oscar added, “We let the person with Alzheimer’s go much longer without being diagnosed.”
“You fear what you don’t know,” said Marco. “We weren’t speaking out or asking cousins or anyone for guidance or help.” He recalled angry exchanges with family members who criticized them for such things as raising their voices to Felipe—not in anger but because of his hearing loss and confused state.
The Garcias divide caregiving duties, such as medication management, medical appointments and childcare according to their varying schedules.
On weekdays, Felipe and Manuela attend the Avenidas senior center’s adult day health center until 2:30 p.m. A trusted neighbor is paid through the state’s In-Home Supportive Services program to take care of them until 5 p.m. Both of these programs, however, have been cut due to the state’s budget crisis.
The Garcia household includes Marco and Elena’s year-old son, Esai, daughter Marina, 2, and Marco’s daughter from a previous marriage, Yvette, 17, who lives there part-time. Oscar is going through a divorce that he says stems from the family’s complicated situation. He sees his two teenage children on visits.
Although daughter Marina often makes physical demands on her grandparents that they aren’t always up to, Marco said his parents enjoy having their grandkids around. “When the kids are here, my Mom is up out of bed playing with them in the living room,” he said. “Dad is sitting at the table watching. It keeps them active.”
In 2009, two things happened to educate the Garcias about Alzheimer’s and prompt them to be more open about Felipe’s condition.
The Alzheimer’s Association’s Northern California chapter reached out to the Mountain View Chamber of Commerce to improve its connections to the business community. About the same time, Avenidas chose a drawing from Felipe’s art class for an auction at the chapter’s annual Memories in the Making fundraiser. It was a colorful abstract design with an Aztec motif.
Felipe, who, according to his sons, had “never lifted a pencil” to draw, was immensely proud of this recognition. Both he and Oscar spoke at the event. Marco believes his father’s hidden artistic talents were related to his earlier work as a butcher in Mexico, where he was born. Although Felipe worked in California as a dishwasher, he never forgot his craft.
“Dad was always very specific about making a steak a certain way, cutting that quarter of beef a certain way and taking out that certain cut correctly,” Marco said. “It’s like art.”
Felipe’s culinary art recently took on new meaning. As his birthday approached in February, he spoke to Marco about his days as a butcher. When Marco told Elena he was “talking silly,” she astutely suggested, “That must mean he’s trying to tell you something.”
On Felipe’s birthday, Marco and Oscar drove Felipe to a slaughterhouse in Gilroy to pick out a goat and help him slaughter it.
“I’ll never forget the look on his face when he got out of the truck and saw where we were,” said Marco. “To others it might seem strange, but for him, he was so happy on his birthday. And it will be a great memory of him for us.”