© Beth Witrogen All Rights Reserved

The call that changed my life broadsided me out of nowhere: My mother didn't have arthritis; she had Lou Gehrig's disease. And Alzheimer's. This, at the same time as my father had terminal cancer. Suddenly both of my parents were dying, and I lived 1,200 miles away with a career and family of my own.

In my youth, I happily left home; now that my parents were ill, I wanted to be with them 24/7. Instead, I had become a long-distance caregiver. When I went home to visit shortly after Mother's diagnosis, I was aghast at the changes in my parents' ability to care for themselves. There were food stains on the carpets, the furniture was undusted, and only one of four electric burners on the stove worked. Their lives were careering out of control, and I hadn't a clue what to do about it.

I was not the only adult child to enter this unfamiliar territory. According to the Long Distance Caregiver Project by the Alzheimer's Association in Los Angeles, there are 3.3 million family caregivers who live an average of 480 miles from their loved ones. They spend an average of four hours traveling to that person. They miss 15 million days from work annually. They are on average 46 years old and care for a loved one who is 78.

The number of long-distance caregivers is expected to double over the next 15 years: Because of mobility, job transfers, divorce and remarriage, more older people living alone or moving to retirement communities, more women in the work force and suburban sprawl, there isn't always someone at home to look after an older relative. Also, within the past decade, the number of people aged 65 and older who have moved to another state has increased 65 percent. Though some may have moved to be closer to their children, others have chosen a location more befitting retirement. The discovery of caregiving needs often comes as quite a shock.

I wager that the majority of these 3.3 million people feel a good level of nagging guilt about living far from their loved ones. These long-distance caregivers are usually also employed and have families of their own. Even if the long-distance caregiver cannot provide everyday hands-on care, she is still responsible for arranging for paid care and coordinating needed services.

Guilt is an emotional norm, a common side effect of caring for aging parents. We think we can do it all and then discover we are exhausted, frustrated and resentful. When we can't see what is going on with our parents on a daily basis, the fears build up and it's harder to feel we are doing a good job.

However, long-distance caregiving IS manageable. The keys, experts say, are adequate planning and good organization. Rona Bartlestone, president of Bartlestone & Associates, a geriatric care management and counseling firm in Fort Lauderdale, Fla., stresses the importance of early planning. "Find out what your parents would want to have done for them if there was a crisis, who their physicians are, if they have legal planning documents in place such as durable power of attorney and advance directives for health care," she advises.

"You also need to find out things like funeral arrangements, financial and long-term care planning such as insurance, and whether they would want to stay in their own home if they need ongoing long-term care. Sometimes parents don't want to share information with children because they're too private or independent, or it's a trust issue, or they don't want to give up control. But an accountant, lawyer, should have that information."

The basic plan includes assessing your parents' needs, developing a flexible plan of care, tapping into community and home-based resources, organizing the legal and financial and medical documents, and monitoring the care.

Here are 12 tips for handling long-distance caregiving with less guilt and more love:

1. Talk with your loved one to find out what she need and what she will accept. Watch for warning signs such as abrupt changes in grooming or eating, social activities or lifelong hobbies.

2. Buy a workbook to organize information. Keep track of your loved one's medical condition and prescription drug information. List all important contacts - friends, neighbors, physicians, financial counselors - and keep notes of conversations.

3. Order a local phone book to research home- and community-based resources such as adult day care, paratransit companies, home health agencies. Call the local office on aging for brochures of services.

4. Locate your loved one's legal and financial documents. These include insurance, birth certificates, Social Security cards, marriage or divorce decrees, wills, advance directives, home and auto insurance, etc. Be sure they are adequate and up to date.

5. Establish a network of support (friends, relatives, neighbors, bank tellers, health care professionals, church members) and keep in touch.

6. Reach out for support, in a group or online.

7. Hire help. Private geriatric care managers can evaluate a loved one's needs and pull all the pieces together into a well-monitored plan of care.

8. Keep in regular touch with your loved one by phone, letters and email. Record any changes you sense in personality or functional abilities.

9. While visiting, schedule a medical appointment for your loved one so you can talk with the physician. Talk with everyone in your support network to re-establish connection and to express appreciation.

10. Meet with an elder law attorney to discuss legal documents and estate planning. If possible, draw up durable powers of attorney and a living will.

11. Set up safeguards such as personal emergency response systems (PERS) and informal networks of neighbors and close friends.

12. Enjoy your time together.

Most importantly, say experts, it's important to both know your limits and to come to terms with the distance. Most older people want to remain in their communities (it's called "aging in place'); you may also wish to remain in yours. You may need to bring in professionals and friends to help; that does not mean you are a bad daughter or son.

Asking for help is not a sign of weakness, but of caring. When you can manage the details, there is more time and energy for the loving relationships. Then, the guilt will melt away in caring well done. Your best is always good enough.

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Resources

WebMD. 10 Strategies for Long-Distance Caregiving. http://www.webmd.com/content/pages/5/4041_130

National Institute on Aging. 20 Questions for Long-Distance Caregivers. http://www.nia.nih.gov/HealthInformation/Publications/LongDistanceCaregiving/

National Association of Private Geriatric Care Managers. These professionals make in-home assessments and develop and monitor a care plan, all in your loved one's geographic area.

The Eldercare Locator. U.S. Administration on Aging; provides callers with information about local services by zipcode.

Elderweb. The grandmother of caregiving sites; almost limitless links to long-term care information, databases, articles, research, news and events.

National Council on Aging. Benefits Checkup program assists families in determining benefit eligibility for services in loved one's area.

Family Caregiver Alliance. Multiple resources for brain-impaired loved ones, including dementia.

Visiting Nurse Association of America. Local agencies database

National Association for Home Care and Hospice. www.nahc.org Home care provider and agency locator.