by Alice Gelber
On the border of San Diego and National City, in the heavy August heat, a middle-aged woman leaves her driveway and walks briskly down the street, past a house or two. She then turns and follows her steps back. She walks into her opened garage and checks a baby monitor. No sound. For now, everything is okay.
She leaves the opened garage, and walks the two houses again, before turning around for a second time. She does this for another 30 minutes or so, and then she goes back inside the house.
Some days, this is the only way for Cathy Kennedy to get some time for herself, to take the walks she used to take before she began caring for her mother.
“I probably looked crazy,” she said, laughing.
Kennedy has to stay close to the house. She needs to be able to hear her mother, Sadie Rackley, who has Alzheimer’s disease and diabetes, and who Kennedy cares for night and day, seven days a week.
Cathy Kennedy and her mother Sadie Rackley live together in National City. Photo courtesy of Cathy Kennedy
Like Kennedy, there are over 40.4 million people providing unpaid eldercare in the United States, according to the U.S. Bureau of Labor Statistics. In the coming years, that number will grow. The bureau defines eldercare providers as “individuals who provide unpaid care to someone age 65 or older who needs help because of a condition related to aging.”
Most mornings, Kennedy wakes up at 6:45. “I give myself an hour to take care of me,” she said in a Zoom interview. This gives her time to get dressed, dump the trash cans, and get the newspaper, which she puts on the table for her mother to read.
She wakes her mother up at eight, to take her blood pressure, weigh her, give her a nose spray and inhaler, an allergy medicine, and then to take her blood sugar, and give her two insulins. Then Kennedy lays out clothing and gives her mother a shower.
After Kennedy helps Rackley get dressed, she checks her mother’s toes. One of her right toes had to be amputated because of diabetes. “I have to manually check each foot every single day, looking for any possible sores or rash,” Kennedy said.
While her mother eats breakfast and takes her pills, Kennedy cleans her mother’s room, changes the sheets and empties the portal commode.
She washes the dishes, does some laundry, and spends an hour encouraging her mom to take her pills. At this point, it’s only 11:30 a.m.
Family caregivers
“Eighty to 90% of care is provided by families,” said Donna Benton, director of the USC Family Caregiver Support Center.
Benton runs one of California’s 11 Caregiver Resource Centers, dedicated to supporting family members caring for their elderly relatives. The resource centers provide financial, legal and wellness services to caregivers.
Most people prefer to age at home. “Family caregiving,” Benton said, “makes it much more likely that the person won’t feel as lonely.” And, older adults cared for by a family member often experience less serious health issues, she said. “Sometimes they have better health outcomes because their family member is able to help get them to their appointments and help them take care of medication.”
No matter how much work Kennedy does, she would prefer to care for her mother than put her in a nursing home. “I saw what my father went through,” she said. And for now, her mother is mobile and is able to feed herself.
Like Kennedy, the majority of family caregivers in the United States are women (58%).
Kennedy, who retired from her water agency job to take care of her mother, receives a small supplement from the state for the hours she spends working as a caregiver. “It takes care of my gas and electric,” she said.
But is it enough? “No, of course not,” Kennedy said, “Of course not.” Caregiving is not only time-consuming and physically demanding, it requires money.
Kennedy’s mother, who spent most of her life working as a cook, doesn’t have a large pension or high social security payments. But, Kennedy remains positive. All she wants to do is provide her mother with a decent life.
“We make it work.”
The cost of care
According to Pew Research, 60% of caregivers work at least part-time jobs, and almost 30% work full-time. And for some, that job is what allows them to continue to provide food, shelter, and healthcare for the person they are caring for.
“Eric” was self-employed before his wife fell into a coma nine years ago. When she woke up three days later, she had diabetes. He quickly realized that something was deeply wrong. His wife had no short-term memory and was showing signs of dementia. She was 56.
At the time, she owned a successful graphic design business. Eric began running both businesses by himself, as his wife’s condition worsened. Spread too thin, he couldn’t keep up. “I ran them both into the ground, more or less,” he said.
Eric thought he would have to give up their house, which had a 30-year mortgage. “I didn’t know how this was going to work,” he said.
So, he did the only thing that made sense: he got a different job. He now works for a company that he wouldn’t name, afraid to lose his job. It isn’t a great company but it helps him pay the bills, he said, so he can take care of his wife, pay a part-time caregiver while he’s at work, and keep their house. But he still fears losing his job, and he asked for his real name not to be used in this story.
“I think like most caregivers, it's a juggling act,” he said, “It's really difficult to do a good job.It goes without saying that I'm going to do my utmost to care for my wife, no matter what I'm going to do, whatever it takes. I'd like to be as dedicated or close to as dedicated for my work, but, you can't do it, it's physically impossible.”
Eric has spent the last nine years fighting with insurance companies and government agencies to help get the care his wife requires. She now has aphasia and only can say a word or two. Eric knows that soon she won’t be able to talk at all.
These were the years they had planned to travel, and fix up their house, and visit relatives and go out to eat. Now, Eric doesn’t believe he can retire. After all the medical expenses, he doesn’t have enough in savings.
“There were days when it was a struggle to buy food and stuff,” he said, acknowledging there are others who have it even worse.
Graying populations
Across the world, nations are reckoning with aging populations and declining birth rates. In Japan, one in four people is at least 65. It has the oldest population in the world, according to the U.S. Census Bureau website. Italy, Germany, Spain and France all have populations older than the United States.
According to the Census Bureau, by 2034 older adults are projected to outnumber people under 18 for the first time in U.S. history. By the 2030s every baby boomer will be older than 65.
Meanwhile, birth rates in the United States have continually declined since the baby boomers. Furthermore, according to Pew Research, birth rates have consecutively declined in the last five years. Reasons for this include the lingering effects of the 2008 economic crisis and higher levels of education for women.
This means in the coming years, there will be more and more people needing care. “We are not prepared at all,” said Benton.
With an aging population and declining birth rate, there could be a shortage of caregivers in the coming years, whether professionals or family members. “We could come to a cliff where we won’t have enough people to care for our aging population,” said Benton.
According to Benton, this shortage is because of an overall disrespect for caregivers. “It’s a worldwide problem,” she said. However, some nations are designing policies to support the needs of an aging population. In the 2000s, Japan created a socialized long-term care insurance plan to help support the country’s elderly. China also has a long-term care plan.
From a policy standpoint, home-based services are finally seeing some progress in the United States, said Benton, but there’s still a long way to go. President Joe Biden’s Infrastructure Bill has an elder care section, which, if passed, could be the first step forward in elder care support.
“Even with this proposal out of Biden, we’re not going to have sufficient funds,” she said.
The caregiver community
Kennedy and Eric both struggled in their first years of caregiving.
Eric, overwhelmed with paperwork and financial issues, found the Los Angeles branch of the California Caregiver Resource Center. His two sons — who both lost their jobs during the pandemic — also moved home and were able to help out.
Kennedy, who admits she struggles with asking for help, felt incredibly overwhelmed. It didn’t help that she was also going through a divorce. “I really had lost myself,” she said.
Through the San Diego branch of the California Caregiver Resource Center, Kennedy took classes on self-care. During the class time, the resource center provided a caregiver to look after Kennedy’s mother.
The instructor told Kennedy to do 10 things for herself a day. Kennedy knew that wasn’t possible, so she chose three. “My little model for myself is three for me,” she said.
She now gives herself permission to make time to read the Bible every morning, find some quiet time, and sometimes she watches a movie on her SmartTV — as long as the movie isn’t too long, she said.
Most people don’t prepare for caring for their family members, and then when they have to do it, they need to learn everything all at once, said Paula Span, who writes about aging for the New York Times. “It’s one of those stories that reaches into everyone’s lives.”
Both Span and Benton see discrimination against older people are a major reason for unreasonable conditions. Human beings develop over their entire lives, Benton said. But, socially, older people are not treated as developing human beings.
Benton believes that the idea of aging needs to be reframed. “We have to have more awareness of the positives that come with aging,” she said.
Loss
As caregivers, both Kennedy and Eric have expereinced devastating loss. Hear what they have to say.
A decent life
Caregiving requires sacrifice. “I think you have to be willing to lose some things,” Kennedy said, “You have to be willing to give up your social life. You have to be willing to be creative. You have to be patient.”
Kennedy had thought she would be spending this time in her life traveling and “enjoying smooth jazz.” Her daughter wanted to take her to South Africa and she wanted to go to the Grand Canyon.
But the last time Kennedy got any time off was last year, when she had a weekend-long break.
As someone who was always involved with her church, Kennedy was hurt by the lack of support shown by the friends she made there. “You have friends that don’t check on you,” she said. “You become out of sight, out of mind.”
Even on the hardest days, Kennedy finds rewarding moments. Sometimes she skips cleaning to sit and eat breakfast with her mother. Sometimes they sing good-morning songs to each other. “The most rewarding part is when she tells me if she can be anywhere, she's glad she's here with me.”
Kennedy knows that one morning her mother will wake up and not know who she is, and that will be hard. But, she wouldn’t do it any other way, she said.
“If I had to do it over again, I would do it. Because if it means she can have a decent quality of life by staying with me than I would do it.”
