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The New, Youthful Face of Caregiving

The New, Youthful Face of Caregiving


Kerri Leo is among a relatively undocumented, but emerging new cadre of caregivers in their 20s, 30s and 40s.


Kerri Leo (above right), who lives in Chicago’s Northwest suburbs, cares for her widowed 67-year-old mother with younger-onset Alzheimer’s disease while holding down a full-time job. This is nothing she planned for, says Leo, who moved back home with both her parents in 2004 when her father was diagnosed with brain cancer.

I certainly didn’t expect to be 37 and living with my mom.

When it was obvious her mother needed full-time care, Leo had to quit a promising career as a meeting planner because it required travel, which “was too hard to do with my mom.” She also had started graduate school the day her mom was diagnosed, but had to postpone those plans as well. Instead, she took a job for a small, Chicago-based association.

Weekdays she commutes to work on the train from the suburban home she grew up in and now shares with her mom. Her two older sisters are not involved in the caregiving and she relies on a professional caregiver to cover while she is at work. Looming in the backdrop of this juggling act, is the day Leo anticipates when the insurance will run out to cover the cost of professional caregiving help.

“I had thought I would be married with children of my own by now, but caring for my mom leaves little time for getting out to meet new people,” says Leo.

Although she doesn’t have any friends her age doing what she’s doing, she does have “an amazing group of friends who understand that if anything happens with my mom, I have to cancel plans.” On call 24/7, Leo is committed to her caregiving out of love for a women who raised her and her two older sisters and took care of her dad during his battle with cancer.

“I’m getting to spend a lot of time with my mom and I know that when she does die, I won’t have any regrets,” says Leo. I’ve done all I can to care for her and make sure she still has some quality of life.”

The New Face of Caregivers

Kerri Leo is among a relatively undocumented, but emerging new face of caregivers in their 20s, 30s and 40s. The majority of these young adult caregivers are women navigating this challenging journey without a roadmap. The “sandwich generation” women who are squeezed between caring for aging parents and their own kids, are a good 20 to 30 years older than this growing group of young adult female caregivers.

According to the National Alliance of Caregivers, there are at least 43.5 million caregivers age 18 and over, equivalent to 19 percent of all adults, who provide unpaid care to an adult family member or friend who is age 50 years or older.

In a report, “Caregiving in the U.S.- A Focused Look at Those Caring for Someone Age 50 or Older,” the numbers have grown significantly since 2004. The average age of today’s caregiver is 50, and the average age of today’s care recipient is 77. On average, people are caregivers for four years.

Leo also has joined the growing generation of family members caring for someone with Alzheimer’s and other dementias. In 2012, 15.4 million family and friends provided 17.5 billion hours of unpaid care valued at $216.4 billion, which is more than eight times the total sales of McDonald’s in 2011. Eighty percent of care provided in the community is provided by unpaid caregivers, according to the Alzheimer’s Association.

Here, we ask Leo to share some of the challenges and rewards of what it is like to be a thirtysomething adult daughter caring full-time for her mother.

Q. Tell us about yourself and how you became the caregiver for your mother?

A. I’m 37 years old and I’m a meeting planner by day and caregiver by night. I live with my mom so she isn’t alone. I’m fortunate that I spent three years working for the Alzheimer’s Association when I was younger so I was well-versed in the symptoms of the disease and what to expect as a caregiver, but even knowing the facts can’t prepare you for the emotional toll of caregiving. I read all the stories from others, but it still doesn’t compare to actually being in the role.

My mom was diagnosed with Alzheimer’s disease on Sept. 10, 2010, but she had been showing signs of the disease for a few years prior to that. I have two older sisters, neither of whom is involved with the care of my mom.

My sister Kris has not spoken to anyone in my family for four years. My sister Kim saw my mom a total of five times last year, which includes my grandma’s funeral. When my mom was diagnosed, I disagreed with my sisters over what was the best course of action for her care. Both of them wanted to put her into assisted living and I said no. I knew from my days at the Alzheimer’s Association that not only could this be financially ruinous, but it was also the worst thing to do for an Alzheimer’s patient. So, I became the sole caregiver for my mom. I have not spoken to either of my sisters in several years, mostly because I am so angry with them for the way they treat our mother.

Q. How old is your mom and what is her official diagnosis? What does that mean for her day-to-day care? Do you have help – professional or otherwise?

A. My mom is 67 years old and she was diagnosed almost four years ago with younger-onset Alzheimer’s disease. Younger-onset Alzheimer’s disease is when the disease occurs in someone under 65 years of age. The average length of the disease from diagnosis to death is eight years, but with my mom being so young, it may be more like 10 or 12 years because she is otherwise in good health. …

To read the entire text of this candid, forthright interview, please go to the website CaregiversForHome.



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