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  • Renée C. Byer / rbyer@sacbee.com

    Law student Robyn Miller, 38, surveys a possible apartment for her mother and grandparents with landlady Linda Gilbert, right.

  • Renée C. Byer / rbyer@sacbee.com

    Robyn Miller checks an apartment she may move relatives to this fall. Her mother has early-onset Alzheimer's. Her grandfather is bedridden. Their Pinole home is a long drive for Miller, who helps with their care. "I'm six months preg- nant," she says, "so I want to get all my birds in one nest."

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Long-distance caregiving of aging relatives is high-anxiety for McGeorge law student

Published: Friday, Aug. 10, 2012 - 12:00 am | Page 1A
Last Modified: Friday, Aug. 10, 2012 - 8:14 am

In a crisis, the highway seems to stretch out forever. Robyn Miller's loved ones live in Pinole, almost 70 miles southwest of Sacramento, an 80-minute drive on a good day. Her grandmother, Catherine Volzke, is 90 and holds the aging household together. She cares for her husband, retired jockey Merlin Volzke, 86, who suffers from stroke-related dementia, as well as their daughter – Robyn's mother – Eileen Miller, who is 68 and has early-onset Alzheimer's disease.

"The worry never leaves your mind," said Robyn Miller, 38, a McGeorge School of Law student who lives in Sacramento. "I go to bed every night thinking, 'I hope my phone doesn't ring tonight.'

"When something goes wrong, you can't be there quick enough."

If living a few counties away from aging relatives is enough to cause anxiety, imagine living several thousand miles across the country. How do people take care of their parents and other elderly relatives from afar?

The answers, as more than 5 million long-distance caregivers have already learned, can be hard to find – but they're increasingly crucial in a rapidly aging nation. The silver tsunami of baby boomers, in the thick of caring for elderly relatives today, will themselves be recipients of care in coming decades.

Like Miller, 15 percent of the country's 34 million caregivers live an hour or more away from aging relatives who need their help, according to National Institute on Aging data. The average distance for respondents in a 2004 MetLife caregiving study was 450 miles, and almost a quarter of those surveyed said they were their loved ones' only caregivers.

They spend money to take care of their relatives: an average of $400 a month. Not surprisingly, the caregivers living the farthest spend the most — almost $9,000 a year, AARP statistics show.

And they spend time, too. Half of long-distance caregivers visit several times a month to help with shopping, medical appointments and paying bills. More than 40 percent told MetLife that they had to take time off work because of their caregiving responsibilities.

Caring for fragile loved ones from a distance can be a frustrating, exhausting endeavor, even for people who are professionals in the field.

As chief program officer for the Alzheimer's Association of Northern California, Elizabeth Edgerly often deals with the concerns of adult children desperate to find help for aging parents elsewhere.

She also understands the problem on a personal level. Her mother is 82 and lives alone on the East Coast. Edgerly manages her mother's care from the Bay Area, patching together resources in her mother's community. She pays her mother's bills online, she said, and hired a nurse to monitor her mother's medications.

"Even putting things into place, you know that from a distance there's only so much you can do," she said. "But the same can be true when you live close by."

Seek medical evaluation

Edgerly urges family members to make a plan. Are there other people living near the parents – another sibling, perhaps, or a longtime friend – who can be involved? What kind of resources can the family invest in finding help? Is the family open to hiring a geriatric care manager, a paid professional who lives near the parents and can monitor them on the family's behalf?

Oftentimes, when dementia is the issue, the situation seems more urgent. If people suspect dementia is encroaching on aging parents' lives, a good first step is arranging a medical evaluation.

"The children need to know what they're up against," said Anne Spaller, clinical consultant for Del Oro Caregiver Resource Center, which provides assistance to caregivers of the frail elderly in 13 Northern California counties.

"Once we get a good baseline assessment, we can arrange for help and care, be it moving them to assisted living or finding help in the home."

The process can be emotionally difficult and financially burdensome. Old family dynamics can arise, for example, with one sibling typically shouldering most of the burden from afar and resenting the fact that the others don't help.

Relatives also quickly discover that care is not covered by Medicare. And it's expensive – up to $150 an hour in Sacramento for geriatric care managers, $25 an hour for home care and about $3,000 a month for assisted living, according to Carol Kinsell, founder of Senior Care Solutions, a Fair Oaks elder care consultant.

Even more frustrating is the possibility that aging parents won't agree to the help that their relatives have painstakingly arranged on their behalf.

They don't have to.

"People have the right to make a bad decision," said Kinsell. "And sometimes, things need to get really bad before they'll agree to get help.

"I tell families, 'You can do all your homework, and your parents may still dig their heels in and refuse.' You have to take a step back and give it a while. It's a little dance."

Crisis can spur intervention

Many times, it takes a crisis before long-distance caregivers can intervene.

For several years, Gene Cone, now 89, considered moving from the South Land Park home where she had lived for four decades. A retired state employee, Cone was having balance problems and feeling disoriented.

"I couldn't walk from my door to the sidewalk," she said.

So she gathered brochures from local senior communities and found a real estate agent to handle the sale of her house – but she hesitated, not wanting to give up her independence.

Then Cone became so ill early in 2011 that she required hospitalization, and her daughter in Alabama ended up scrambling from afar to make health care decisions for her and locate appropriate housing.

"She could not go home," said her daughter Judy Johnson, 68, an editor who lives near Anniston. "It was a rough time.

"I did my part all from Alabama, selling her house and getting her living situation straightened out and finding a new doctor for her. There was a tremendous amount to be done. I worked at it eight hours a day."

Now Cone, who has long-term care insurance, lives at Eskaton Fountainwood Lodge in Orangevale, where she takes Spanish classes and goes to exercise every morning.

Without financial resources, options are more limited.

"We've seen people quit their jobs and move across the country to care for their loved ones," said Edgerly. "What are you going to do? They sell their house here and move back in with Mom and Dad."

Robyn Miller has decided on another solution to shorten the distance: She's moving her mother and grandparents to Sacramento this fall.

For the past several years, she has visited two or three times a month, taking on more responsibility for their finances and accompanying her mother to the doctor. But now she's pregnant with her first child and entering her final year of law school.

With her family in Sacramento, she said, she can take better care of them.

"I know it will be better for everybody," said Miller. "It's a relief to think they'll just be a few miles away."

© Copyright The Sacramento Bee. All rights reserved.

Read more articles by Anita Creamer



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