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Jewish Journal

Feeling Squeeze of Long-Distance Care

by Ronda Wilkin

May 5, 2005 | 8:00 pm

Dad's first bypass surgery was 25 years ago. I don't think any of us realized he was living on borrowed time.

I have just returned home from my fourth trip to Palm Desert in less than six weeks. I can still remember the phone call I got from my mom:

"Ronda, now don't get hysterical, but your father had a heart attack this morning," she said. "He's had surgery; they put a stent in. There's no need to come in.... I've already told [your brother] Michael the same thing."

I immediately called my brother from my cell phone to work out a plan and called my husband at the same time from our home line to "get home now!"

My brother and I packed our overnight bags and called off work. We both have young children, so we rearranged our spouse's lives to take care of day care, Girl Scouts, baseball, Hebrew school and homework schedules. The call from mom came at about 5 p.m., and we arrived at Eisenhower Medical Center by 10 p.m.

Instantly, Michael and I were indoctrinated into the sandwich generation -- adults caught between raising a family and caring for an ailing parent. An AARP study found that of all caregivers of persons aged 50 and over, 41 percent also had children under the age of 18 living in their households.

A few weeks later, I took my kids with me to see my parents during spring break, leaving my husband, Dennis, at home to catch up on work. While we were there, dad had an episode of congestive heart failure. I sent an "SOS" to Dennis, who arrived by 11 p.m., spent the night, and then left with the kids early the next day so I could stay with my parents. We discovered that his arteries were heavily blocked; a quadruple bypass was scheduled for two weeks later.

I returned to Palm Desert the day before surgery and left two days later only after dad was off the ventilator and breathing on his own. I hated leaving. I felt guilty, but I needed to get home to pack my twins up for fifth-grade outdoor education and celebrate Passover at my sister-in-law's home.

I can't help feeling jealous of my parents' generation. When mom was my age and flying cross-country to deal with my ailing grandparents, my brother and I were both in college and mostly self-sufficient adults out on our own. She didn't have the same issues that I do.

Most employers haven't caught on to the Sandwich Generation trend, which will have a major impact on their work force. The number of seniors in the United States will more than double from 35 million in 2000 to 72 million by 2030, and half of the over-85 population will need help with some sort of personal care.

Currently, there are 34 million Americans providing care to older family members, according to the 2004 National Caregiver Survey by the National Alliance for Caregiving in collaboration with AARP. And 15 percent of those caregivers -- more than 5 million of us -- live more than an hour away from our relatives.

And while caring for the sick has been considered "women's work" in the past, those caring for the elderly are nearly equally divided along gender lines. Men now make up 44 percent of the care-giving population, according to the National Family Caregivers Association.

A recent study by the National Alliance for Caregiving/Met Life found that the average distance a caregiver travels is 450 miles at a cost of $392 per month. For those who live the farthest, more than three hours away, they spend an average of $674 per month.

More than half visit at least a few times a month and almost half report they spend the equivalent of one full workday per week tending to their caregiving responsibilities. Many employers have yet to identify solutions to assist caregivers so they can do their jobs, tend to their own families and provide care for their parents.

Additionally, 44 percent say they've rearranged their work schedules for caregiving and 36 percent report missing days of work. Women are more likely than men to report missing work, but just as many men as women report rearranging their work schedules to provide care. Long-distance caregivers also miss an average of 20 hours per month of work.

The same study calculated that American businesses lose between $11 billion and $29 billion each year in retention, absenteeism and productivity issues due to employees' need to care for loved ones 50 years of age and older.

More than half of long-distance caregivers report that they provide care as a helper to a sibling or other caregiver. The sibling living closest to the parent is most often identified as the primary caregiver.

This is the situation for Temple Aliyah's Chazan Mike Stein. This past year, he has made numerous trips to New York. As one of three brothers, Stein relies on his siblings to take the lead on his father's care issues.

"Living close by, they are able to take care of myriad details that I just cannot," he said. "It feels awful to be so far away, go for a visit, then step back into my everyday life. It's tormenting."

Currently, both brothers are in the process relocating from New York to Florida and all three are having discussions on whether to move their father to Florida or to the San Fernando Valley, thus making Stein the primary caregiver.

"Dad is relocating. Not moving him is absolutely not a choice. He needs us to be close to care for him, and equally so, we need him," he said.

Another wrinkle in long-distance eldercare are legal issues.

"Unfortunately each state varies in its laws applicable to elder care-giving situations, thus it's important to connect with an attorney local to your older adult loved ones to guide you through the local legal issues," said Ronald Barkley, elder law attorney and president of ElderQuest.

The specialized area of law incorporates estate planning, health-care advocacy and other legal issues unique to older adults. The National Academy of Elderlaw Attorneys at www.naela.org is a good place to start your search.

I've worked in the senior care field for the last few years, caring for the frailest seniors and often counseling families dealing with eldercare issues. But even my knowledge and training wasn't enough to alleviate all of the unexpected challenges and fears.

Balancing my children's needs with the long-distance care was difficult. When I left the first few times, it was heart-wrenching to look into the eyes of my 10-year-old son, who not only idolizes my father but also looks like him. It tore me up that I couldn't leave him with a sense of security that his hero would be OK.

I also never broke down at home, because I didn't want to scare my children. I never cried in front of my mother for similar reasons. But after the surgery, when we were told he made it and would be OK, I let the floodgates open.

I have learned a number of important lessons from the past six weeks. The first is to never go to sleep with less than a half-tank of gas in at least one of my cars -- the amount I need to get to Palm Desert.

I try to remember that there are only 24 hours in a day, and while I am in this situation, sometimes enough is OK. This is not the time to be a type-A people pleaser and perfectionist. I can't be the 24/7 family mediator. Balancing work, children, family, volunteer commitments and overcoming the distance between West Hills and Palm Desert requires help. I learned to not be shy about asking for or accepting help from friends. And while it's difficult for Jews to consider, it's important to give up the guilt; it doesn't help you or your loved ones.

The trip I just returned from was to help care for dad, who is home and restless, and to give my mom a break. But I also need to give myself a break, both physically and mentally. I reserve guilt-free time, during which I exercise, eat right and remember to breathe.

Long-distance eldercare is a marathon that you need to train for, and like any race it doesn't necessarily offer the luxury of time.

Ronda Wilkin is the president of The Wilkin Group, a public relations and marketing firm that specializes in the mature and senior markets.

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