At 60, Jessica King’s mom was diagnosed with Pancreatic cancer. During the first few years of her mother’s illness, Kim’s parents still lived in their home in New Jersey. During one visit, Kim found fast food wrappers scattered all over the place. She realized they were struggling to take care of themselves, so she moved them to their home in Boston.
“I didn’t think twice,” said Kim, a Korean-American. Her husband, who is also Korean-American, joined immediately. Living in an intergenerational family was just the norm for her growing up, as her grandmother lived with their family until her death in Kim’s third grade.
But the challenges of caring for terminally ill parents have grown, and Kim has struggled to juggle three children and a career. Six months later, she quit her job to become a full-time nanny.
Although her mother died Hospice Five years ago, Kim’s father, now 84, lives with his family. After his wife died, he tried to live alone again, but after multiple falls and emergency room visits, Kim moved him back to her home permanently. Supporting older loved ones is embedded in her family values, she said, and it’s the same for many families from different backgrounds.
“The way we love and care for and express each other is rooted in these cultural norms and expectations,” King said. “There is no right or wrong, but understanding how these cultural values shape our choices is critical if we want to better support caregivers.”
Through her grief after her mother’s death, Kim, who co-founded the care platform ianacare, realized there was a huge gap in the available care and aged-in-place resources and how easily people connected with them. “I really thought I was the only one in this situation, and when you get caught up in it, you just react and survive.”
In-place defined aging
Definitions of aging in place vary widely, but an article in the 2020 journal Aging Innovation Begin to define the term as “one’s journey to remain independent in one’s place of residence and to participate in a community”. This will look different for different families. Aged-in-place can take place in homes where seniors have lived for decades, in new homes moving in to be closer to family, or in intergenerational homes.
According to the University of Michigan National Poll on Healthy Aging, a majority of seniors (88%) say they want to age at home. But it’s not that simple, as families often need to set up systems and modifications (such as grip bars in bathrooms, wheelchair ramps, or technology to detect falls) to ensure realistic safety.
Families face many challenges, especially if they live far away. Managing challenging health conditions from a distance can be difficult — even when caring for a loved one in your own home.
“When something happens in a private home, we treat it as a private matter, and it is the responsibility of individuals and family members to address it,” said Dr. Jennifer Molinsky, program director of the Housing Aging Society Program. Harvard University Joint Center for Housing Research. Her research focuses on the lack of affordable housing options for adults to age in place. It doesn’t help that the responsibilities families face to make this happen for their loved ones can be complex and costly.
The financial realities of caregiving can be tough. Costs are not only concentrated in housing or remodeling seniors’ homes to meet their physical needs, but most people require long-term supports and services (including health care and meals) that may come from community programs or the family itself.
“We call it the double burden of housing and care: Can you afford your housing and everything you need?” Morinksey said. Multigenerational living can be a solution, and while it can pay off, it also places some financial pressure on families.
According to the National Nursing Coalition (NAC), nearly half of the 53 million Americans who provided unpaid care in 2020 reported financial stress due to care. Six in 10 active caregivers say their responsibilities at home have affected their careers; NAC noted that half of those who leave their jobs are to spend more time with their loved ones.
Overall, these caregivers provide the equivalent of $470 billion in unpaid care, the report shows. “Nursers are becoming the invisible pillar of health care. In order for adults to enjoy their old age, we need to respect the role of the caregiver,” said Sarita A. Mohanty, MD, MPH, president and CEO of the SCAN Foundation, a fund The Society is a nonprofit dedicated to transforming elder care.
Cultural expectations and a sense of obligation to provide ageing in place are driving factors for those who want to make ageing in place a reality.
“While aging is universal, everyone’s experience with aging is different,” Mohanty said. The American Mental Health Association notes that people of color tend to have different experiences, who make up 40 percent of caregivers, are more likely to be of lower socioeconomic status, endure medical racism and lack access to support services. “Few black and Hispanic caregivers feel that their area is doing a good job of providing resources, such as high-quality health care or socialization. When we think about aging in place, we must consider race, ethnicity, and income The intersection of condition issues,” Mohanty said.
What’s more, some families may not find their long-term care options comfortable for their loved ones if the facility does not have staff or facilities that share the same cultural background as older adults, and everything from food and music to language, say Dr. Allyson Brothers is an associate professor in the Department of Human Development and Family Studies at Colorado State University. On the other hand, aging independently or with a family enables people to live in an environment that respects their cultural background.
start a conversation
For families facing these decisions, it’s important to have a conversation with loved ones so you can understand their wishes and expectations.
“The data shows that most people don’t actively decide where to live in their later years,” Brothers said. “Many times it’s a crisis that forces older people to leave the home, such as a fall and resulting fracture, which can be difficult for the individual and their family. A person’s well-being cannot come back when they leave the home and never come back. Saying it could be devastating.”
Decisions made in crisis mode often lead to more regret and family stress.
As families grow further apart and people’s health issues become more complex, you may also realize that you no longer have the ability to support loved ones as they age in place. You need to start a conversation with your loved ones and other family members about the next steps.
One of the most important things families can do is learn about resources in their area. Finding all the support an older adult needs can be a complex puzzle, and unfortunately, it is every family’s responsibility to put the pieces of the puzzle together. “Knowing where to start and whether a loved one is eligible for certain benefits can be daunting,” Morinksey said.
If you are currently helping a loved one of a certain age, or you will help in the future, start here to find:
- Regional Agency for Aging Issues (AAA): Agency that coordinates programs to help older adults stay at home through programs such as MealsonWheels.
- Rural Health Information Center: To educate rural residents on family services and community support.
- Advanced Access Point: Developed by CSU Extension and CSU Human Development and Family Studies and other organizations as a resource for local seniors, but brothers say the site gets traffic from people across the U.S. and you can use it It comes no matter where you are, you can find resources on a variety of aging topics, from law and finance to mental health.
- American Council on Aging: Provides resources on how to get financial compensation through Medicaid as a caregiver.
- National Council on Aging: Find resources for seniors and caregivers to remain independent, live long and healthy, and be financially secure.
- Family Caregivers Alliance: A non-profit organization focused on improving the lives of caregivers and the people they care about.