Some mornings would start as early as midnight for Kimberly Tran. Other days an alarm clock would wake up the 27-year-old Campbell resident, so she could check on her grandmother. Other times it was Grandma Mai herself coming in to sound the alarm. Deep sleep was always in short supply.
More recently, with some changes to Grandma Mai’s medication, Tran can occasionally sleep in. But the morning routine still requires her to guide her grandmother to the restroom to brush her teeth, then to the kitchen for her daily peanut butter toast. After breakfast, Tran administers her grandmother’s daily medications. Then she gets her set up with a book to read for 10 minutes.
“I have to find an activity to keep her busy, otherwise she would be all over the house rearranging things,” Tran says.
The last step in the process is getting Grandma Mai dressed and driven over to her daycare at Live Oak Senior Center in Cupertino. Tran’s grandmother, Mai Ngo, emigrated during the Vietnam War, but she is now 88 years old and has moderately severe dementia.
“I feel like I have been taking care of her my whole life, but she has been living with us for three years,” says Tran, whose mother helps out but is limited by her age. “In the Asian culture, it’s common to keep grandparents at home as long as you can. It’s not a job, it’s my family. It’s very exhausting. Many mornings I’d wake up to say, ‘I can’t do this.’”
Tran is far from alone in Santa Clara County, where nearly 31,000 people over the age of 65 were diagnosed with Alzheimer’s disease as of 2015. That number is expected to rise by 82 percent—up to 56,270—by 2030, according to the Alzheimer’s Association. In the next two decades, the number of people living into their late 60s and beyond is expected to increase by the millions.
According to a 2014 U.S. Census Bureau report, “In 2050, the population aged 65 and over is projected to be 83.7 million, almost double its estimated population of 43.1 million in 2012.” The burden of caring for these aging adults—parents and grandparents, aunts and uncles—will increasingly fall on younger generations, people in their 20s and 30s like Tran.
As the population of senior adults continues to grow and uncertainties arise regarding Medicaid and senior health care funding, family conversations about caregiving decisions become more crucial.
San Jose State professor Erin Woodhead, who studies geropsychology, says home caregivers tend to be young women, many of whom stop tending to their own needs.
“It’s often a female caregiver, and she may work full time and caregive,” Woodhead says. “Sometimes, while serving in the person’s best interest, they sacrifice their own health.”
Victor Washington, a 26-year-old Berkeley resident, discovered his mom had early-onset Alzheimer’s when he was an undergraduate senior. He and his girlfriend were also expecting their first child.
“At first I assumed her memory decline was due to her aging, but over time she began to show signs of short-term memory loss at a faster rate,” Washington says.
Compelled to take care of his single mother, Washington now checks in with his mother almost daily. He does her grocery shopping, manages her finances and secures her Section 8 housing.
In a community forum about millennials who provide care for their parents, hosted by U.S. Rep. Eric Swalwell (D-Pleasanton) Washington shared his story, noting that support groups have helped him juggle his personal life with the emotional and logistical tolls of caregiving, such as handling financial documents and securing his mom’s Supplemental Security Income.
“As I go through the process, I’m learning how to have more patience and learning more about my mom and how to approach certain situations,” Washington says.
“Anyone who reads the news knows the cost of health care is really a problem,” says Michele Boudreau, communications director of the Northern California Alzheimer’s Association. While noting that “Alzheimer’s is the most expensive disease in America,” she adds that more young people should take time to learn about the disease. “The more people are cognizant about the disease,” she continues, “the better families will be able to prepare.”
The cost of treating those diagnosed with Alzheimer’s is about $23,497 a year using Medicare, while those using Medicaid spend $8,192, according to the Alzheimer’s Association’s 2017 Fact Sheet. While Medicare is primarily a health and hospital insurance program for seniors age 65 and older, Medicaid supplies nearly 72.5 million Americans that includes people of all ages who meet low-income or disability qualifications.
“Having explicit discussions with your parents and finding out their preferences are important,” Woodhead adds.
Discussing a parent’s wishes, in the event they are diagnosed with dementia, is not an easy conversation, but the results can prevent future complications and alleviate potential stress.
While Alzheimer’s puts a heavy cost on the health care system, the cost of diabetes is not far behind, as it costs an average person $13,700 in annual medical expenses, according to 2013 data provided by the American Diabetes Association.
One in 11 people have Type 2 diabetes, according to Santa Clara County health officials, but one in three are pre-diabetic. In January, the county kicked off its campaign to be a dementia-friendly city, which encourages community members to be informed about the disease and educates them on how to be kind and respectful to people with it. “It’s about being patient and kind and aware in the community,” says Diana Miller, who manages the Seniors’ Agenda Project. “The less scared and more aware people are of the disease, the more people will advocate for the government to put more money into research.”
With the cost of senior care facilities and hired caretakers being a financial burden—if not an impossible task for many young people—an increasing number of families are taking on the responsibility themselves.
For Tran’s family, the compromise was finding an adult day care for Grandma Mai just part of the time. Tran realized that her previous job working with special needs kids by day, coupled with caring for her grandmother by night, was unsustainable.
Since her grandmother started attending Live Oak Adult Day Services on weekdays, Tran’s stress has eased a bit. However, the facility costs the family about $150 a week out of pocket.
“I didn’t realize how much it was affecting me until recently—it is emotionally straining,” Tran says. “Right now we don’t know what to do, we are stuck. If I could go back in time, I would definitely have made sure my family was more prepared. I would have gotten her situated in a living situation that wouldn’t put such a strain on the family and be prepared better financially. Definitely a more proactive than reactive approach.”