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The Honolulu Advertiser
Posted on: Sunday, November 4, 2001

Sandwiched between duties

• Living with parents by planning, sharing load

By Katherine Nichols
Advertiser Staff Writer

Leo Casey, single father of 8-year-old Pumehana, center, lives with his daughter and his mother, Scoops Kreger, right, in Aina Haina. Leo Casey said he learns from both his daughter and his mom, and even though the arrangement is hard work, it's taught him tolerance, patience and love.

Jeff Widener The Honolulu Advertiser

Leo Casey is profoundly aware of the meaning of role reversal. He is a single father to his 8-year-old daughter and caregiver to his somewhat independent 79-year-old mother.

"I have my work cut out for me," said Casey, 51, of 'Aina Haina, an investigator with the federal public defender's office.

Though Casey said he's honored to do the cooking and cleaning while also acting as breadwinner and nurturer, he admits it's not easy. "I have to reach out for help," he said. "And I get it."

School programs offer some relief, and he trades off childcare with other single fathers. And, "I make sure I get to the gym three times a week. I make sure I go surfing. I have to make sure that I get mine; otherwise I'm not effective as a son and a parent."

In his struggle, there is also reward. "I've become keenly aware of the passages in life," he said. "My mom teaches me lessons and my daughter teaches me lessons. The greatest gift is tolerance, patience and love for everybody — no matter what."

His is an increasingly common experience.

Women are delaying childbirth until their late 30s and early 40s. And life expectancy is rising thanks to medical and technological advances, engaging baby boomers in a tug-of-war many of their parents might never have confronted. An estimated 24 million Americans are caring for both children (or grandchildren) and elderly parents (or grandparents) simultaneously. Sandwiched between the two demanding responsibilities — and often working a full-time job in addition — they are referred to as the sandwich generation.

Where does duty lie? How can it all be done well? Or even adequately? How will people manage financially? How can anyone keep this pace for what may be years, or even decades? What are the alternatives?

As the population continues to age, the crisis will reach epic proportions.

One of the reasons, according to author Claire Berman in "Caring for Yourself While Caring for Your Aging Parents," is that "people are not just living longer; they are living longer with disability."

One in seven adults cares for an elderly relative, Berman said. By the year 2020 that number will be one in three.

The urgency is the result of a shortage of workers to care for this growing number of elderly people. "We don't have the work force," said Marilyn Seely, director of the Hawai'i Institute on Aging. "There's not a whole lot of status in the profession, and yet they're more important than ever."

Even when someone is available to help care for an aging parent — which can be more physically and emotionally demanding than caring for young children — many can't afford it. If they can, they often battle waves of guilt.

Judy Glickstein, whose mother lived with her, her husband and two teenage sons until last year, said she finally had to put her mother in a full-time care facility after the 91-year-old, who suffers from dementia, broke her hip.

The facility costs $3,500 a month — far more than Medicare covers. The medications are under $200 a month, which Glickstein said is minimal compared to what many people spend. Fortunately, her mother lived frugally and saved money. "Otherwise my goose would be cooked," said Glickstein, who lives and works as a clinical tutor in Kailua. "I worry, worry, worry about the money running out. I mean, what do we do?"

Because nursing homes provide more extensive care, costs can run over $100,000 per year. "Really, Medicare is designed for acute care," said Seely. "The minute you don't need it, then you no longer get assistance. It's a terrible dilemma. That's why caregivers shoulder most of the burden."

According to the national advocacy group Children of Aging Parents, caregiving has become the fastest-growing unpaid profession in the America.

However, Seely predicts the future will change — especially with smaller families and single parents — from assumed responsibility. "Clearly we're going to see a shift toward paying family members," she said. This would follow a model already in place with the Developmentally Disabled Medicaid Waiver Program, which uses federal and state money.

"That may enable the mother with young children to stay home and care for mom and get some kind of compensation for that." But she and others realize that this possible solution carries its own set of problems — a sister, for instance, who thinks a sibling is just taking the money and not doing the work.

Whether money, guilt, duty, altruism or unconditional love (or all of the above) motivate the caregiver, predicaments arise at every turn. "The family dynamics in this are absolutely..." Seely paused, searching for the word, "fascinating, frustrating. It creates all kinds of tension and stress, and families often don't know how to cope. And sometimes roles change ... and it can create a lot of problems."

Now that so many women work — often more than one job — they carry more responsibilities than ever. Adult children are also staying home, creating financial and emotional burdens for their "sandwiched" parents.

The result is intergenerational living, something Seely believes is more prevalent in Hawai'i than on the Mainland. "I think some of that is culturally based," she said. "But I also think some of it is economically based."

Despite the difficulties, Glickstein's husband and sons handled it well when her mother lived with them, even when it meant Glickstein couldn't help with homework because she had to put her mother to bed. "They get to see that you don't just discard people," she said.

Still, those who find themselves in the sandwich generation must learn to deal with the array of emotions that accompany their role.

Even though Glickstein still spends a significant amount of time with her mother, she said she is "tormented with guilt." She tells herself: "How can I let someone who doesn't even know her take care of her? I should be doing that."

Berman expanded on this point. "Those who care for aging parents would do well to accept that there will always be some amount of guilt," she wrote. "The point is, guilt happens. Anger happens. Frustration happens. Depression happens. Weariness certainly happens. The trick is to make much of the good moments, also, when they happen, for in caregiving there can also be moments of closeness, moments of sharing, fleeting moments of exchange or understanding, moments in which love happens."

Glickstein put it even more pointedly. Her time as caregiver to her children and her mother has taught her to appreciate relationships more. "Material things become less important," she said. "They're meaningless to (my mother). It's the relationships she cultivated with her friends and her children that sustain her. Everything else is transient."

Though the road has been difficult, Glickstein said that this course has also taught her the true purpose of life. "Maybe what we're really here to do is serve, unconditionally and with joy. That can bring more gratification and meaning into your life than pursuing all of the things that in the end are dust anyway. It softens your heart, and in turn, brings more love into your life. And it's the love that goes back and forth that endures."

• • •

Living with parents by planning, sharing load

Here are a few suggestions for "sandwich" caretakers, gleaned from Internet and print sources:

  • Get adequate rest, eat properly, find time for your own joy. You help nobody if the stress becomes too much and you burn out. Highly stressed people are less effective and efficient. Don't put your life on hold.
  • Take time for your marriage: Do something you enjoy with your spouse at least once a week. Make a special effort to increase the amount of intimate time you spend together. Realize that unfulfilled dreams may cause problems in your marriage; be sure to address these.
  • Don't ignore your own family to care for your parent. Sometimes family members who seem to be doing fine really need the attention.
  • Make caring for your parent the responsibility of the whole family. Don't shoulder the entire burden yourself.
  • Hold a weekly family meeting to settle conflicts, and make decisions.
  • Prepare a long-range financial plan: Who is responsible for the ailing parent? For extended care? For college tuition costs? Keep detailed records and adhere to a budget. This is important to allocate resources and prepare taxes.
  • While your parents are still healthy, get the answers to these questions: Is there a will? Where is it? To whom should power of attorney be granted?
  • Use community programs and services: The Honolulu elderly affairs Division received 44,000 calls last year about local services (523-4545). National Elder Care can help people who need to locate services in any zip code in the country (800-677-1116). Some of the local services include meal delivery, transportation, in-house personal care (bathing, etc.), both light and heavy housekeeping, someone to keep the elderly person company, and case management (to arrange and adjust services).
  • If your aging parent will live with you, remember that the parent can and will probably want to have responsibilities in the household. Let them be productive, involved members of the family.