When your culture expects you to grow old at home

When she was 60, Jessica Kim’s mother was diagnosed with pancreatic cancer. During the early years of her mother’s illness, Kim’s parents still lived in their own home in New Jersey. During the visit, Kim found fast food wrappers scattered around the house. Realizing that they were struggling to take care of themselves, she moved them into her home in Boston.

“I didn’t think twice,” says Kim, who is Korean-American. Her husband, also Korean-American, was also immediately on board. Living in a multigenerational household was simply the norm for her growing up, with her grandmother living with her family until she passed away when Kim was in the third grade.

But the challenges of caring for a terminally ill parent became overwhelming, and Kim struggled to juggle three children and a career. After 6 months she quit her job to be a full time carer.

Although her mother died in hospital at home 5 years ago, Kim’s father, now 84, lives with the family. He tried to live on his own again after his wife’s death, but after multiple falls and visits to the emergency room, Kim moved him back into her family home permanently. She says that supporting an older loved one to age in place was built into her family values, as it is for many families from many backgrounds.

“The way we love and care for each other and express it is rooted in these cultural norms and expectations,” says Kim. “There is no right or wrong, but it is important to understand how these cultural values ​​shape our choices if we want to better support caregivers.”

Through her grief after her mother’s death, Kim realized that there was a huge gap in what caregiving and aging resources were available and how easy it was for people to connect with them, and she founded the caregiving platform ianacare. “I really thought I was the only one in this situation, and when you’re narrow-minded about it, you’re just reacting and surviving.”

Defining aging in place

The definition of aging in place varies greatly, but a 2020 journal article Innovation in Aging set out to define the term as “a person’s journey to maintain independence in their place of residence as well as to participate in their society.” It will look different for different families. Aging in place can be done in a home the older adult has lived in for decades, a new home moved in to be closer to family, or in an intergenerational home.

Most older adults — 88% — say they want to age in their own homes, according to the University of Michigan’s National Survey on Healthy Aging. But it’s not that simple, as homes often need to be fitted with systems and modifications (such as grab bars in the bathroom, wheelchair ramps or fall-sensing technology) to make that reality safe.

Families face many challenges, especially if they live far from each other. Managing a challenging health condition from a distance—or even when caring for a loved one in your own home—can be difficult.

“When things are happening in the private home, we see it as a private matter, and the onus is on individuals and family members to understand that,” says Jennifer Molinsky, Ph.D., director of the Housing an Aging Society Program at Harvard University’s Joint Center for Housing Studies. Her research focuses on the lack of affordable housing options for adults to enable aging in place. It doesn’t help that the responsibility families face to make this a reality for their loved ones can be complicated—and expensive.

Providing care

The financial reality of caregiving can be difficult. Costs are not only about housing or modifying the elderly’s home to fit their physical needs, but most need long-term support and services (including health care and meals), which can come from community programs or from families themselves.

“We call it the double burden of housing and care: Can you afford your housing and everything else you need? says Molinksy. Multigenerational living can be one solution, and while it can be rewarding, it also puts a certain amount of financial stress on families.

In 2020, 53 million Americans provided unpaid caregiving—and nearly half of them cited the financial burden of caregiving, according to The National Alliance for Caregiving (NAC). Six in 10 working carers say their responsibilities at home have affected their careers; half of those who left their jobs did so to spend more time with their loved ones, says the NAC.

Overall, these caregivers provide the equivalent of $470 billion in unpaid care, reports show. “Caregivers are becoming the invisible backbone of healthcare. For adults to age in place, we need to respect the caregiving role,” says Sarita A. Mohanty, MD, MPH, president and CEO of the SCAN Foundation, a nonprofit organization focused on transforming care for older adults.

Cultural expectations and a sense of duty to ensure aging are driving factors for those who want to make aging in place a reality.

“Although aging is universal, the experience of aging is different for everyone,” says Mohanty. The experience is often different for people of color, who make up 40% of caregivers and are more likely to have lower socioeconomic status and experience medical racism and lack access to supportive services, Mental Health America notes. “Fewer black and Hispanic caregivers believe their home areas do a good job of providing access to resources, such as high-quality health care or socialization.” It’s these intersections of race, ethnicity and income status issues that we have to take into account when we’re looking at aging in place,” says Mohanty.

What’s more, some families may not find that their long-term care options are comfortable for their loved one if the facility does not have staff or facilities that share the older adult’s cultural background, and there can be a mismatch in everything. from food and music to language, says Allyson Brothers, PhD, associate professor in Colorado State University’s Department of Human Development and Family Studies. However, aging independently or with family members allows people to live in situations that honor their cultural background.

Starting the conversation

For families facing these decisions, it’s important to start conversations with loved ones so you can get a sense of their desires and expectations.

“Data shows that most people are not making proactive decisions about where to live late in life,” says Brothers. “Many times it is a crisis that forces an older adult out of their home, such as a fall and subsequent fracture, which can be difficult for the individual and their family. It can be devastating to a person’s well-being to leave their home and never come back.”

Decisions made in crisis mode often lead to more regret and family stress.

As families move further apart and people live longer with more complex health problems, there may also come a time when you realize you are no longer able to support a loved one as they age. You need to open the conversation with your loved one and other family members about next steps.

Finding resources

One of the most important things families can do is find out about resources in their area. Finding all the support needed for an aging adult can be a complex puzzle, and unfortunately, the onus is on individual families to put the pieces of the puzzle into place. “Knowing where to start and whether a loved one qualifies for certain benefits can be daunting,” says Molinksy.

If you are currently helping a loved one in their place or you will in the future, here is where to start looking:

  • Regional Agency for Aging (AAA): Organizations that coordinate programs that help older adults stay in their homes through programs, such as MealsonWheels.
  • Rural Health Information Center: Studies on home care and community support for rural residents.
  • Access points for senior citizens: Developed by Colorado State University Extension and the CSU Department of Human Development and Family Studies and other organizations, this is designed as a resource for their local older adults, but Brothers says the site gets traffic from people across the United States. You can use it to find resources for a variety of aging topics, from legal and financial to mental health, no matter where you live.
  • American Council on Aging: Provides resources on how to get financial benefits through Medicaid as a caregiver.
  • Aging Council: Find resources for older adults and caregivers to maintain independence and age healthily and with financial security.
  • People’s Alliance: A non-profit organization focused on improving the lives of caregivers and those they care for.

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