Caught in Between
As people live longer and start families later, thousands of them are caring for children and elderly parents simultaneously. Here are the stories of kamaaina who are caught in the middle and how they cope. Some of the biggest challenges are financial, so we’ve spoken to experts on ways this Sandwich Generation can still protect its own financial goals.
Among the 169,000 unpaid family caregivers in Hawaii are thousands of baby boomers who find themselves sandwiched between two generations of family members that simultaneously need their help. Chances are good that you know a caregiver, are a caregiver or will become one.
Just ask Kalowena Komeiji. While standing in line at Longs pharmacy, the 51-year-old regularly runs into baby-boomer friends who are also there to fill prescriptions for their aging parents. Nancy Azeri thinks of caring for her mom as so common, she calls it “a daughter’s rite of passage.” Indeed, the typical caregiver in Hawaii is a 46-year-old woman who works full time and spends 20 hours a week providing care to a loved one.
There are plenty of sons stepping up, too. Dexter Suzuki and Steve Tam both left full-time careers for the more-than-full-time job of caring for family members. Many in the Sandwich Generation are either retrofitting their homes for aging family members or moving in with them, as Beth Yos did when she relocated with her husband and four children from Kaimuk-ı into her father’s home in Kailua.
Kalowena Komeiji enjoys a light moment with her dad, Ernest Ching, and her daughter's boyfriend, Ali Sek.
Photo: Elyse Butler and Matt Mallams
Thanks to the marvels of medical science, people are living longer than ever before (adults over age 80 are the fastest growing segment of the population), and most will spend years dependent on others for their most basic needs. The challenge is magnified in Hawaii, where the number of older adults has grown twice as fast as the national average over the past decade. Twenty years from now, one of every four people living here will be over 65. Before the baby boomers become the ones who need help, they are the ones providing it—often at great cost to their families, their careers, their savings and their own health.
While the median cost for a Medicare-certified home health aide in Honolulu is around $24 an hour, and assisted living costs a median of $42,000 a year, nursing-home costs in Honolulu can top $300 a day, climbing into six-figure territory per year, according to the Genworth Financial Cost of Care Survey released in April 2009.
Ethan Okura, an estate-planning attorney at Okura & Associates, says even when some people take out a long-term care insurance policy, it may fail to cover actual expenses down the road.
“What used to be $3,000 a month in coverage when the policy was taken out is now $9,000, so the insurance isn’t enough,” he says. “Once they run out of personal cash to cover shortfalls, they need to get on Medicaid. Long-term care insurance can be useful, but many are uninsured or underinsured.”
Being In Two Places At One Time
Suzuki was a pretty busy guy in 2008, with a full-time job, two young sons and a wife based in Los Angeles as a flight attendant. But when his 83-year-old mother with dementia fell and broke her hip, the responsibility fell to Dexter, an only child, to manage more and more of her life. He spent a year trying to do so while working. On some days, he’d get phone calls from his mother 15 minutes apart; worse were the days when none came. That uneasy feeling is an ever-present state of mind for members of the Sandwich Generation.
“The phone rings, and you get nervous,” says Komeiji, who juggles a job at Hawaii Community Foundation and caring for her 88-year-old dad. Her 23-year-old daughter moved back home with her boyfriend to help her. For Azeri, executive assistant to the COO of Halek-ulani Hotel, her “other job” includes helping with a special-needs granddaughter and with her 85-year-old mom, who moved here to be close to her daughter. “There seems to be a different issue to deal with nearly every day,” said Azeri, whose routine for a time was to call her mother twice daily and stop by every night after work.
The challenge of staying fully focused at work is affecting one in four employees in the United States, where productivity lost to caregiving is estimated to cost businesses up to $29 billion a year. No wonder savvy employers are looking into flex time, flex place and on-site adult daycare.
At some level, adult children know that their parents will die, but don’t want to think about what their parents’ life or theirs might look like leading up to the end. “It’s as if we live at the base of a mountain and know there are boulders at the top,” says Steve Tam, “but we’re too busy down below to think about the likelihood that those boulders will roll.” That inevitable fall from independence to dependence can either be incremental, as it is in the case of dementia, or fast, as it is with a stroke. Either way, there’s no blueprint or training manual.
“My dad was a carpenter for the federal government, so I thought he could fix anything,” reminisces Komeiji. Perhaps that’s why she and her siblings were slow to acknowledge what was happening, at least early on. It wasn’t until Komeiji found a pot on the stove that had turned black because the burner hadn’t been turned off that she knew her father was no longer safe by himself.
Suzuki started piecing together an unsettling picture when he noticed that the clocks in his mother’s home were set at different times and things were put away in strange places. More disturbing were the outdated canned goods he found in his mom’s pantry and the insects he found in her oatmeal. Worse still was learning she had depleted her bank account writing small checks to charities and lotteries.
The incremental decline in mental and physical capacity parallels the step-by-step relinquishing of one’s life to the care of another. It’s a series of losses that both the elderly and their adult children have trouble facing, according to Martha Wacker, RN, of Case Management Services. An elderly person might minimize a fall he or she took or try to fudge a lapse in memory, and an adult child wants to see them as the capable person they once knew.
Nearly half of people ages 65 and older will be incapacitated in their lifetime, and those that enter into a nursing home spend an average of 2.4 years there, according to the Kaiser Family Foundation.
Most people should consider long-term care insurance, even as young as 35 years old, says Martin Arinaga, senior vice president at Chinen & Arinaga Financial Group Inc.
“If you want to look at purchasing coverage that you need, it is going to get expensive, but don’t let that scare you away,” he says. “You can get a policy as low as $100 a month, and how that translates to benefits is relative to age and health.”
The journey from living independently, to living at home with help, to living in a nursing or care home can happen in a matter of weeks. People are sent home from the hospital quicker and sicker to family members who are untrained and offered virtually no help from the government for long-term care at home. That’s where professional care managers come in, like Robert Nogami RN, MS, of Lokahi Case Management, who hears from families who need immediate help navigating the bureaucracy and finding a placement that feels like a good fit.
Many of the baby boomers now involved in caring for their elderly relatives can pinpoint the episode that led to an unraveling.
For Steve Tam, things “started to crumble” when his 82-year-old dad was diagnosed with Alzheimer’s and his father-in-law had a stroke. “I realized I needed to stabilize the family situation,” says 55-year-old Tam, who left his full-time job as VP of sales and broker-in-charge at Prudential Locations to do just that.
Things began to come apart for Beth Yos shortly after her mother died of ovarian cancer, when her dad fell and broke his arm at the Okinawan Festival. During the time he was recuperating at home, he fell again—this time, down uncarpeted stairs—and fractured his skull. Yos was eight months pregnant at the time and ended up giving birth to her third child at The Queen’s Medical Center, while her dad was downstairs in the intensive care unit with pneumonia.
It’s Not Cheap To Grow Old
At a cost of $123,000 a year (or $337 a day), Hawaii’s nursing homes are the fifth most expensive in the country, according to AARP state director Barbara Kim Stanton. “And worse,” she says, “not only are we expensive, we also have the country’s highest occupancy rate (95 percent).”
There may be a waiting list for nursing homes in our state, but most of those who need long-term care want to stay in their homes for as long as they can. In spite of the myth that contemporary Americans abandon their elderly, most seniors live in their own or family members’ homes.
Many costs are out of pocket for members of the Sandwich Generation, who don’t keep track of expenses as they meet the demands of the day: a shower chair, diapers, co-pays for medication, special diets, etc. A common refrain: “You don’t stop and calculate; you just buy what you have to buy.”
A Balancing Act
Baby boomers tell stories about all sorts of physical challenges in caring for their relatives—whether changing an adult’s diaper, or lifting out of bed a person who weighs more than they do, or being spit, peed or puked on—but the responsibilities go far beyond those. Many adult children find themselves overseeing repairs to the homes their parents have lived in for decades, and most are consumed with paperwork and phone calls to sort out medical, financial and legal issues.
It’s not as if the extraordinary efforts of those in the Sandwich Generation are met with cooperation or appreciation by their loved ones. Attempts to take away the car keys or take over the finances are often met by resistance and resentment, as elders struggle to hang on to their independence. “It’s a fine line between when they can care for themselves and when you need to step in,” says Nancy Azeri, who tried to take over her mother’s finances when she found out that bills were being paid twice … or not at all.
Trying to persuade an elderly relative to accept help—whether it’s hiring a home-care aide or moving into assisted living—a family caregiver is likely to hear: “It’s too expensive,” “I can manage on my own,” “I don’t want a stranger in my house.”
This balancing act, between wanting to honor a parent’s wishes and wanting to do what is right for them, combined with juggling the expenses of more than one generation, can take a physical toll on the sons and daughters, who too often put themselves last on the list of priorities.
Due to high levels of stress, long-term-caregivers are at risk for sleep deprivation, immune-system deficiency, muscle and joint problems, depression, chronic anxiety, loss of concentration and premature death. Queen’s gerontologist Lam Nguyen, M.D., recognizes what a sad reward some receive for their devotion. He points to a recently published study linking caregiver stress to a 23-percent increased risk for stroke and warns, “We must not forget caring for the caregiver.”
In juggling the needs of four children ages 2 to 9 and a disabled father under one roof, Yos uses her nights for paperwork that she can’t get to during the day; she’s experienced vertigo from too little sleep. Preventative healthcare, like exercising, eating right and taking breaks, also seems to elude many who simply cannot leave their disabled parents.
PAYING FOR CARE
Paying for long-term care can be a challenge, and there aren’t many resources out there, says Scott Makuakane, an estate-planning and trust attorney with Est8Planning Counsel in Honolulu.
There are three options: Self-pay, such as savings; third-party pay, like long-term care insurance; or government benefits, often Medicaid.
While Medicaid is a long-term solution—Medicare only covers up to 100 days of care—there are restrictions on income and assets. For example, the maximum amount of income for a qualifying individual is $50 a month; any excess must go to nursing-home care. They may have $2,000 in other assets and can own a residence as long as they maintain an “intent to return,” even if it is unlikely.
“The best option is private pay; you are going to have a lot more options available to you than if you do government benefits,” Makuakane says. “You can save over time, or you can get long-term care insurance policies.”
The resulting guilt, tension and exhaustion can trigger a combustible mix of family dynamics. Wes Lum, Ph.D., University of Hawaii School of Social Work, has observed that the caregiving burden often falls to a single person in the family, and not without resentment, as described in the book They’re Your Parents, Too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy.
Many families are turning to mediation for help in sorting out a family’s dysfunctional dynamics. “The best time to bring in the conflict is early on, before sides get too entrenched,” advises Tracey Wiltgren, executive director of the Mediation Center of the Pacific, which is seeing an uptick in elder-care mediations. Conflicts, left unaddressed, only grow; Wiltgren once mediated a case that had escalated to the point where each of six siblings brought attorneys into the mediation, as did their elderly dad.
The work of caring for an elderly relative can be exhausting and frustrating, but it is not without its rewards.
Tam has no regrets about stepping away from a 30-year career, although he calls caring for his aging parents and in-laws “one of the toughest challenges I’ve ever had to face in my life.” One of the rewards for Tam is demonstrating to his college-age son and daughter “the kinds of sacrifices loved ones make for each other.”
“I think it’s good for kids to know their help is actually needed,” says Yos, whose four youngsters help out in lots of small ways: putting the walker in the right spot, helping to prepare food or keeping an eye on where Grandfather might wander.
Suzuki, too, has recognized the upside of involving his 8- and 13-year-old sons in the caregiving of his mother before she passed away this year. He cherishes a memory of his older son sweetly combing Grandma’s hair and putting cold cream on her face.
For Tam and Suzuki, the experience has also shaped their career decisions. Suzuki co-founded a company last year called EOM (Ease of Mind) Hawaii, which provides home monitoring and maintenance services to help elders stay safe in their own homes. Tam hopes to find a position that involves advocating for the elderly when he returns to the workforce.
When It’s The Baby Boomers’ Turn
When the baby boomers are the ones in need of long-term care, Nadine Smith, COO of Ohana Pacific Management Co., predicts an increase in requests for private rooms with computer access and Wi-Fi in nursing and care homes, as well as more meal options. Baby boomers are also likely to differ in their attitudes toward hiring home health aides or drivers, since they are more accustomed than previous generations to paying for help, whether it’s for house cleaners or personal trainers.
They may know what they want, but that doesn’t mean they’ll be likely to afford it, especially if today’s caregivers have depleted their retirement cushions in caring for their parents. It may not be a flashy issue, but caregiving is the issue of our age, because, sooner or later, it will affect every person in Hawaii and every family in America.
Jana Wolff is a published author and ghostwriter of five books and more than 100 feature articles.
Next Page, get some additional advice for the Sandwich Generation
Advice for the Sandwich Generation
By Jana Wolff
Have “the talk.” The unanimous advice of current caregivers and professionals in the field is to find out what your relatives want in specific terms, and do so while they are healthy enough to tell you. Make sure all the siblings hear it and get it down on paper.
Nail down paperwork. Executing an advance directive for health care and establishing a financial power of attorney will enable family caregivers to carry out a loved one’s wishes.
Know where things are. Keep a notebook with information about doctors, medications, insurance policies, taxes, etc.
Share the care. Dr. Lam Nguyen suggests that families organize and commit to a written schedule that includes respite time for the main caregiver. He also thinks it’s reasonable to ask family members living on the Mainland to contribute money if they can’t contribute time.
Consider long-term care insurance. When it comes to buying long-term care insurance, 50 is the new 60. For those who can afford it or who are offered it as an employee benefit, Robert Nogami advocates purchasing insurance at a younger age to take advantage of lower premiums.
Match insurance to needs. If you have a choice of insurances, don’t just focus on the feature they are marketing (such as drug coverage), but check to see if it covers what you’re at high risk for, like rehab, according to Judy Suzuki, RN, manager for Hospital Case Management, Straub.
Use available resources. There are a lot of resources in our community but no one central repository. Wes Lum suggests starting with the Elderly Affairs Division and the Aging and Disability Resource Center (www.hawaiiadrc.org). Look, too, for senior fairs held throughout the year and for special interest assistance from SagePLUS, the UH Elder La Program, and the Alzheimer's Association.
Talk about what’s going on. While many local folks cling to the traditional assumption that family care is a strictly private matter, talking is a great way not only to vent but also to share resources. Consider joining a caregiver support group.
Learn all about it. Kupuna Education Center at KCC offers an excellent family caregiver training series. AARP offers a good site for planning ahead: www.aarp.org/caregivers.
Consider hiring a care manager. Case managers develop care plans that coordinate care for an elderly person; some also specialize in placing residents into long-term care facilities. Look for “Home Health Care” in the Yellow Pages or contact The Hawaii Association of Case Managers for private practitioners.
Consider consulting a professional. According to Michelle Tucker, CFP, JD, CPA, family caregivers are taking on responsibilities that can have serious legal, tax and financial consequences. Seek professional advice from someone who specializes in elder law, estate planning, retirement or long-term care.
Lobby for change. By all accounts, Hawaii is ill prepared to help people age with dignity and assist those who care for them. The Hawaii Family Caregiver Coalition is a multi-disciplinary group working toward this end.
Next Page, more financial advice for the Sandwich Generation
More Financial Advice for the Sandwich Generation
By Jennifer Sudick
Unpaid family caregivers often give a lot, but when tax time rolls around, they are also entitled to a few breaks, says Brad Konishi, a certified public accountant in Honolulu.
Head of household: Generally, filing as head of household means lower tax rates than married filing separately or single filers. To file as head of household, there are three basic requirements: The filer must be “considered unmarried” by the IRS on the last day of the year; pay more than half the cost of keeping up a home for the year; and a qualifying person must have lived with the filer for more than half of the year, except if the qualifying person is a dependent parent.
A person who is single and living on their own can qualify as head of household if they are paying to keep up the household of the parent.
Married couples who file jointly generally have the lowest tax rates, so it is almost always a better option to file with the married filing jointly status rather than as head of household, Konishi says.
Medical tax deduction: When children live in the same home as an elderly parent, and pay for capital improvements for the home for the medical benefit of the parent, such as adding a wheelchair ramp or handrails, it may be possible to get a medical tax deduction on some of the costs. Just take the cost of the improvement and subtract out the resulting increase in property value; the remainder would be the amount of the medical deduction. This deduction is available to all taxpayers regardless of their filing status.
College versus care
The financial strain of the “sandwich generation” often means a choosing how to spread resources between college costs for children and long-term care for parents.
It’s important for people to align dollars with the priority, says Eric Fujimoto of Ameriprise Financial Services Inc.
Ask: What if I pay everything for school out of pocket? What if I pay everything for my parents out of pocket? Is the end result acceptable? If it is, accept the risk of long-term care payments and college costs; if not, transfer the risk, he says.
To help defray college or private-school costs, consider federal tax credits available for college students or their parents. Tuition and education deductions exist for parents of students as well.
Normally there is a $13,000 gift limit, but there is no limit by a family member when they are paying directly to an educational institution for tuition costs.
Ethan Okura of Okura & Associates suggests setting aside money into a 529 educational savings plan designated for a child or other family beneficiary. That money will grow tax free, and it will come out tax free if used for qualified educational purposes.
Functioning like a Roth IRA, the beneficiary can change if the designated child does not attend college. Each state has a plan, and many colleges have a plan.
When qualifying for Medicaid, there is a five-year look-back period on gift-giving, so someone considering that option would need to plan ahead when looking to leave an inheritance, Ethan Okura of Okura & Associates says.
Parents should also consider a life estate – the right to use their home for the rest of their life – where both the child and parent are on the title, and ownership by the child is a future right after the parent dies, he says.
A legacy trust can be used when leaving assets to children, he says. Also called a generation-skipping trust, the parent can take assets out of the trust or use assets that are included in the trust. Those assets are protected against creditors or a divorcing spouse, as well as estate taxes.
“Remember that estate planning is an ongoing process, so even if they have done something in the past, it is important to check back every five years or so,” he says. “Generally for boomers, they are right at the age to start looking seriously at planning.”