The Journal Gazette
Monday, March 07, 2016 10:00 pm

Facing struggle of caring for parents, children

Allison Klein | Washington Post

About a year after Heather Rowe’s youngest son was born with Down syndrome, her father died. Two years after that, her mother was diagnosed with lung cancer.

Life’s challenges began to stack up as Rowe, 45, cared for her two young sons and also her mother.

"I was emotionally exhausted," said Rowe, who lives in Takoma Park, Maryland, with her wife and boys, ages 6 and 9.

Rowe is on the cusp of a fast-growing population – a mashup of Generation X and millennials – that is starting to care for a revolving door of young and older loved ones.

The term "sandwich generation" was coined in the 1980s to describe people who are squeezed between taking care of their children and their parents. Now, as members of the baby boom generation are entering their 70s, that sandwich is poised to become a footlong.

There are about 75 million baby boomers in the United States, and many are beginning to experience the changes nobody wants and nobody likes to talk about: disease and chronic conditions. They are starting to look to their children for assistance, just as Rowe’s mother did.

The boomers’ children, meanwhile, tended to have babies in their 30s and 40s instead of their 20s, meaning that if they have a sick parent, it’s not uncommon for them to juggle young children and a mom or dad in need of care.

Their challenge is that their children and parents often need them at the same time, in much the same way – for time, love, patience and even money.

"I was sad I was spending so much time away from my kids," Rowe said. "When my mom was very sick, it was hard to be really present with them."

Time, money

Carol Abaya, a writer and expert on aging issues, created a magazine called the Sandwich Generation in the 1990s. It happened after she suddenly felt the pressure to take care of her sick parents at the same time she was running her public relations and advertising firm in the New York area.

Although Abaya’s children were grown by then, she realized that a growing number of people were torn between the needs of their parents and their children. The publication offered advice and support to mid-life adults who felt stretched thin in their caregiver roles.

"When I looked around for help in dealing with my parents, there wasn’t anything," Abaya said. "But there’s been a big change. Today, there’s more awareness of aging, chronic illness and the toll that it takes on society."

The U.S. population is graying. Between 2012 and 2050, the number of people over age 65 is expected to almost double, from about 43 million to about 84 million, according to the U.S. Census Bureau.

"The baby boomers are largely responsible for this increase," states An Aging Nation: The Older Population in the United States, a Census Bureau publication. Older people are also living longer. For example, a person who is 85 years old can expect to live to an average of 91, according to the publication.

All of this can add up. Baby boomers are sometimes caregivers to their aging parents at the same time they’re dealing with their own health issues. That leaves the boomers’ children stretched between caring for parents, sometimes grandparents and young kids.

"The problem is time," Abaya said. "Women are generally working, so they don’t have the time to take care of their parents."

If caregivers change their lives to make more time, then the problem often becomes money.

"Let’s say the woman who was working quit work to take care of her elderly parent," Abaya said. "Later in life, she has less money. You have a snowball effect. Everything snowballs to the next generation."

Accepting help

So what’s a sandwicher to do? Experts say they should find and accept as much help as possible.

Rowe’s mother died in December 2014 at age 76. Rowe said she could not have managed the dual caregiver role without the support of her wife, her friends and her mother-in-law, who watched her kids on the long, draining days when she took her mother to chemotherapy treatments.

"It helped to come home and everyone there understood what I was going through," Rowe said. "I couldn’t have done it without my support network."

Rowe started accompanying her mother to chemotherapy each week in Columbia, Maryland, a 40-minute drive from her home. Her brother coordinated her mother’s finances. Her sister moved into her mother’s home.

Rowe, who quit her job after her first son was born, said she was able to handle the stress because she didn’t try to do everything herself. And no matter how tempting, she did not spend the night at her mother’s house.

"After those long, exhausting days, I wanted to be home with my family," Rowe said. "I needed to take myself out of that space and transport myself someplace else."

Experts in the field say people who are sandwiched need to take breaks. Otherwise, they become burned out and even sick themselves.

"Caregivers are notorious for not doing self-care. They feel guilty for not being there," said Anjana Chacko, a social worker who runs a pre-hospice program with Gilchrist Services in Maryland. "Having breaks and getting out and doing something fun for themselves is not frivolous. It’s self-care. It’s vital."

Chacko said one client of hers was recently stressed out from the intensity of caring for a loved one.

"She says to me, ‘I do get a break – I go to the dry cleaner and the grocery.’ ... I said, ‘OK, we need to have a talk about what we consider a break.’ "

Chacko also said some caregivers are concerned they will lose their job, and income, if they take too much time off.

Her advice is for everyone to be more flexible in the kind of help they are willing to accept.

"Some families are capable of hiring help but want to try to save their money for a future catastrophe," Chacko said. "They can try taking some of that money out now to keep their sanity."

She defined the range of help as anything from hiring someone to come in and cook and clean to hiring a nurse to give a family member a break a few hours a week.

"If people do have funds but are loath to part with them, I try to get them to see the broader picture here," Chacko said. "Consider using $50 for a couple of hours of relief. Put that in context of what it’s costing you emotionally because you never have a break."

She also encourages people to rely on community.

"Is there somebody who can provide child care?" she said. "What support do you have from church? Community? Friends and neighbors?"

Planning ahead

Robert S. Bullock, 69, a lawyer who specializes in estate and life planning, said he is starting to see friends his age show the beginning signs of cognitive and physical issues. He says people need to have a plan in place if they become sick.

"I’ve become my own client," Bullock joked.

He said nobody wants to talk about declining health, but if you plan for it, it takes a large part of the burden from your family. He said that includes small things, such as aging parents organizing their home so caregivers can easily access documents and sort through belongings. And larger things, such as having a living will.

This way, people can stipulate when they are not in a crisis situation how they would like things done if they happen to find themselves in one. Potential sandwichers need to encourage their parents to make a long-term plan if they haven’t already, he said.

"People will be on a journey to chaos unless they do financial and care planning," Bullock said. "Planning will allow your family to survive and absorb what can be the overwhelming costs of long-term care. You want to preserve your assets consistent with your estate plan."

Some things Bullock suggests are estate and disability planning, understanding Medicare and Medicaid, setting up disability trusts and life insurance trusts, naming guardianship and conservatorship, getting long-term care insurance, and becoming familiar with nursing homes.

"Nobody wants to face it. It’s painful," Bullock said. "But you have to address the elephant in the room."

He also said that taking care of a sick or disabled loved one can be a full-time job.

"Someone has to be the advocate and caregiver and financial manager," Bullock said. He suggests hiring professionals to help through this tough phase.

"There’s a service for everything," he said, including a company to help you maximize your health insurance coverage when you file claims.

There is also a range of lower-cost and free senior resources available through state-run departments of aging, which can be found online.

For Rowe, while it was heartbreaking to sit with her mother for hours during her treatments, she said it was a nice way to bond, listening to her mother reflect on her life.

Chacko said the key to making end-of-life time meaningful is to listen to the person who is ill and respect her wishes. Ask yourself, is she more social or more private? Some people may want to go on safari in Africa, but some may not have that energy or inclination.

"I tell patients: ‘You only have this much energy. Use your energy like gold. You get to pick how you spend your gold,’ " Chacko said. "All family members need to do is to just be there and show them you love them. Don’t expect things they may not be able to provide."

The reason parents look to their children when they are sick is because they love them and trust them. They want to pull their children close when they feel vulnerable. And they want to spend the time they have left surrounded by them, remembering days when they were vigorous and healthy, when their bodies and minds worked as they should.

"I’m grateful I got to be there for my mom," Rowe said. "And I’m grateful for the time I got to spend with her. We were close."

Subscribe to our newsletters

* indicates required