Caregiving from a distance? Plan ahead

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Christopher J. Gearon

Visiting her mother a little more than a year ago, Ann Hofkin confronted a harsh reality: The 84-year-old was slipping. Checks weren’t cashed, the cat’s litter box was dirty, and there wasn’t much food in the refrigerator. The usually tidy home was in disarray.

Hofkin’s mother also seemed depressed. She had little interest in eating. “I was concerned that she was taking very poor care of herself,” Hofkin, 65, said.

The situation was complicated by the fact that Hofkin lives in Long Lake, Minn., while her mother resides in a continuing care retirement community outside Boston.

Hofkin is one of seven million long-distance caregivers. These are adult children who care for aging parents who live an average of 450 miles away, according to the National Alliance for Caregiving and the MetLife Mature Market Institute.

Adult children often first realize that Mom or Dad needs help when there’s a sudden hospitalization or a frantic call from an overwhelmed parent. In many instances, a child will discover evidence of a parent’s deterioration during a visit.

Having to move quickly, family members who live far away are unable to easily navigate the labyrinth of medical, social and financial resources that aging parents may need to live safely in their own home.

“It is very difficult for a layperson to manage the different aspects of the fragmented delivery system,” said Penny Hollander Feldman, director of the Center for Home Care Policy and Research at the Visiting Nurse Service of New York, located in New York City.

If you’re too far away to monitor a parent, you have a couple of options. You can hire a professional to oversee your parent. Or you can coordinate the care yourself by assembling a network of neighbors, medical specialists, drivers, housekeepers and other helpers.

Get a geriatric assessment

In either case, you first should get a geriatric assessment, in which a professional identifies problems and suggests a care plan. An assessment ranges from $100 to $500, said Feldman.

Such an assessment would cover a range of issues: Is your parent showing signs of depression or dementia? Does a parent need help preparing meals? Are bills getting paid?

Ask your parent’s doctor or a hospital discharge planner for the name of someone who performs geriatric assessments. You can also get a recommendation from the local Visiting Nurse Associations of America (www.vnaa.org; 202-384-1420) or the local Area Agency on Aging (use the Eldercare Locator at www.eldercare.gov to find the nearest agency or call 1-800-677-1116). Or contact the National Association of Professional Geriatric Care Managers (www.caremanager.org; 520-881-8008).

Once you get the assessment, you’ll need to decide how to proceed. Hofkin, a photographer, decided to hire a geriatric care manager. A physician friend referred her to Suzanne Modigliani, a clinical social worker in Brookline, Mass.

Geriatric care managers assess and address the complex needs of the elderly. They’ll arrange for transportation to doctor’s offices and make sure a parent’s house is fall-proof. If a parent’s health deteriorates, a care manager can decide if assisted living or a nursing home is the best option and then find a suitable facility.

After conducting an evaluation, Modigliani presented Hofkin and her siblings with a plan to help Mom remain at home. She found a personal organizer, who set up a system for bill-paying, closed some bank accounts and sorted through clothing.

Modigliani also found a psychiatrist for Hofkin’s mother, who suffers from depression, anxiety and mild dementia. She hired a driver and a home-care aide, and monitors these service providers.

When Hofkin’s mother needed to be hospitalized last summer, Modigliani arranged for a private aide to stay in the hospital room. She helped the elderly woman address some issues, such as the amount of attention she was getting from the doctor.

Hofkin’s family pays Modigliani $140 an hour. Care managers charge hourly rates running from $75 to $150, said Deborah Newquist, a care manager and past president of the National Association of Professional Geriatric Care Managers.

Geriatric care management is not a licensed field, so it’s important to get references. A care manager should be a licensed or certified nurse, social worker or therapist. Find out if the manager is a member of the association of geriatric care managers.

Coordinating care yourself

If you don’t want to use a care manager, you can put together the care pieces yourself. That’s what Michelle Baker of Bethesda, Md., did seven years ago when her mother, Ann McLeod, of Asheville, N.C., began suffering the effects of dementia and cardiovascular disease while she was in her late fifties.

Baker cobbled together a network of family friends, neighbors and professionals to help her mother, who lived alone.

An Asheville hospital social worker suggested that Baker get her mother a Philips Lifeline medical alert system. Baker put three friends and neighbors on the contact list. If McLeod fell or had an emergency, she could press a button to notify her support system.

These three friends, plus five others, agreed to check on her mother, pick up groceries and get her to doctor appointments. In addition, Baker stayed in touch with her mother’s physicians and part-time home-care workers.

“It was a complicated care network,” Baker said. She had the system in place for nearly two years before McLeod moved in with her. McLeod later moved to an assisted living facility.

Baker advises that obtaining durable powers of attorney will give caregivers the right to make legal, financial and healthcare decisions. Doing this early on, she said, “saves you a lot of time and frustration later.”

At the first signs of a problem, contact your parent’s primary-care doctor to determine if there is a medical cause. For instance, drug interactions are common among those taking multiple medicines and could be the cause of dizzy spells, lethargy or lack of appetite.

To make a long-distance care plan work, it’s essential to assemble a network of friends and neighbors, as Baker did. Set up a schedule for regular check-ins. Baker advises that you don’t depend too heavily on any particular person in the network.

Finding services

You’ll also need to find services in your parent’s community. Your network can help with this. Your parent’s place of worship may also know of resources or even deliver services.

The local Area Agency on Aging is a free resource for providing names of home health aides, homemakers, transportation services, senior centers, adult daycare and home-repair contractors. The agencies can also help you assess the types of services you will need.

If your parent suffers from cancer, Alzheimer’s or any other condition, look
to patient-advocacy organizations for
help. The Alzheimer’s Association (www.alz.org; 1-800-272-3900) and CancerCare (www.cancercare.org; 1-800-813-4673) provide local information and resources for both patients and caregivers.

When you hire a home aide, prepare a schedule of duties. Call the aide regularly, and ask one of your parent’s friends to drop by occasionally while the aide is there to make sure that nothing seems amiss.

If you need to hire a personal organizer, as Hofkin did, ask an accountant or elder-law attorney for a referral. Or find one at the American Association of Daily Money Managers (www.aadmm.com; 1-877-326-5991).

For many seniors, cooking or grocery shopping is an issue. The local aging agency can recommend nutritionists and food-delivery services. Meals on Wheels (www.mowaa.org; 703-548-5558) could be an option, and some programs offer additional services.

Consider your parent’s social life. Put a plan in place to help your parent pursue favorite activities. Perhaps that could take the form of regularly scheduled outings to a senior center, which can offer everything from theater trips to a game of bridge.

Also, gather important information, such as a medication list, bank and brokerage account details, Social Security numbers, and contact information for doctors, health insurers and pharmacists. Know where a parent keeps important documents, such as birth certificates and insurance policies.

It’s wise to plan ahead, said Carol Levine, director of the Families and Health Care Project at New York City’s United Hospital Fund. Levine said adult children should talk with their parents while they’re still healthy about their wishes regarding living at home or moving in with adult children, powers of attorney, and end-of-life decisions.

“It’s preferable not to have to do this in a crisis,” she said.

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