It was the call that every adult child dreads: My mother had become terminally ill with Lou Gehrig's disease, and my father was dying of cancer. Both of my parents were dying, and I lived 1,200 miles away with a career and family of my own.
In my youth, when my parents were healthy, I had longed to leave their nest; now that they were ill, the distance between us weighed heavily. When I went home to visit shortly after my mother's diagnosis, I was aghast at the decline in their ability to care for themselves. There were food stains on the carpets, the furniture was coated with dust, and only one of four electric burners on the stove worked.
Suddenly, I had become a long-distance caregiver. I was not, I later learned, the only adult child to enter this unfamiliar territory.
According to the Family Caregiver Alliance, nearly 34.2 million people in the United States provide unpaid care for someone age 50 or older, and 15 percent of them are long-distance caregivers.
In the old days, ailing parents would most often be looked after by their adult children. But people are more mobile as a result of divorce, remarriage, and frequent job changes, and more women -- traditionally the family caregivers -- are in the workforce. So more older people are living alone or moving to retirement communities far from their families, where there isn't always someone at home or nearby to look after them. And when your parent suddenly loses his or her independence and you live far away, it can be a shock.
"There is a tremendous need to figure out how to get resources for parents, retain the connection for caring -- and for a sane life," says Eileen Goldman, director of Senior Services at Jewish Children and Family Services in San Francisco. A difficult challenge indeed, but not impossible. The keys to good long-distance caregiving, experts say, are planning and organization.
Rona Bartelstone, president of a caregiving resource and counseling firm in Hollywood, Florida, 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, and if they have legal planning documents in place such as durable power of attorney and advance directives for health care," she says.
"You also need to find out about things like funeral arrangements, financial and long-term care planning such as insurance, and whether your parents would want to stay in their own home if they needed 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 or lawyer should have that information."
Planning tips for long-distance caregivers
Children of Aging Parents, a resource organization in Levittown, Pennsylvania, suggests these planning tips for long-distance caregivers:
Talk with your loved one to find out what she needs and what she will accept. During your visits, watch for warning signs of declining faculties, such as changes in grooming, eating, or social activities. Look for changes in the way he or she manages money, cleans, shops, and gets around as well, as they may also be significant.
If you notice what appears to be a decline in thinking and reasoning, you might want to ask a physician to "test" your loved one for cognitive function.
Buy a workbook to organize information. Keep track of your loved one's medical condition and prescription drug information. Make a list of all important contacts -- friends, neighbors, physicians, financial counselors -- and keep notes of conversations.
Order a local phone book and list of community resources such as adult daycare, paratransit companies, and home health agencies. Call the local office on aging for brochures about its services.
Locate your loved one's key legal and financial documents.
Establish a network of support (friends, relatives, neighbors, bank tellers, and physicians), and keep in touch.
Reach out for support in a caregiver support group or online bulletin board or "buddy" system.
Hire help. Private geriatric care managers can evaluate a loved one's needs and begin a well-monitored plan of care.
Keep in regular touch with your loved one by phone, letters, and e-mail. Record any changes you sense in his or her personality or ability to function day by day.
If your parents are seriously ailing, try to find someone you trust in the neighborhood (possibly a relative, sibling, or longtime friend or neighbor of the family) to check up on your loved one once a day or as often as appropriate, either by phone or in person. You can offer to pay for these services, if necessary, or trade off responsibilities, with you calling, say, every Sunday, Tuesday, and Thursday night at the same time. If you don't get a response, have your ally run by your parents' house and check on them. If your parent has moved to a strange town and doesn't know anyone there, look into a personal emergency-response system, or alternate daily calls with long-distance friends and relatives.
When you're home visiting, make good use of your time. Accompany your loved one to a doctor's appointment so that you get to speak to his physician in person. There, establish a relationship with the doctor and office nurse, learn the medications, understand the conditions, and assist in organizing their services; you may learn things that surprise you. While you're in town, meet with an elder law attorney to discuss estate planning and, if possible, to draw up durable power of attorney and a living will.
In addition, being in town gives you a chance to meet with the people in your loved one's support network and show your appreciation of all their hard work. You can also seize the opportunity to find out what services are available for local seniors by reading the local senior newspaper and talking to people at senior centers.
How do these suggestions play out in real life? Like other caregivers, I didn't find out about many of these tips, such as speaking with my parents' physicians, until after the problems appeared. However, I called a few of my parents' closest friends to alert them to my parents' condition, and stayed in touch by phone. And, being a reporter, I kept meticulous notes of every conversation as well as a running list of contacts in my computer files.
Because word eventually spread about my parents' plight, their lawyer contacted me, and on one visit we drew up documents for durable power of attorney and living wills.
Unfortunately, I found I couldn't rely on my parents' religious community, nor my own family, as much as I'd hoped. I also never joined a support group because there were few available at the time -- and I was too tired to go out again after a long day.
I also found that the service and affordability of the home health agencies were not ideal. Even though these issues seemed overwhelming at times, I was getting an education in how this country's fragmented long-term care system worked. Gradually I gathered enough medical, legal, financial, and housing information so that when it was time to move my parents to a nursing home, and later to make funeral plans, I didn't feel quite as lost. I didn't always succeed in my goals, but I did the best I could: I knew this time was precious.
For yourself, it's important both to know your limits and to come to terms with the distance. Most older people want to remain in their communities; 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.
Its information and referral service can put adult children in touch with support groups and resources in their area.
National Association of Private Geriatric Care Managers
Children of Aging Parents
Offers information, referrals, and support for caregivers.
Administration on Aging
Provides local resources and links on caregiving.
Family Caregiver Alliance
Offers resources and an on-line support group to caregivers of brain-impaired adults.
National Association for Home Care
Gives advice on how to choose a home care provider.
National Family Caregivers Association
Offers brochures on everything from self-care to bereavement.
Visiting Nurse Association of America
Provides a database of local agencies.
Angela Heath, Long Distance Caregiving: A Survival Guide for Far Away Caregivers (American Source Books)
Kerri S. Smith, Caring for Your Aging Parents: A Sourcebook of Timesaving Techniques and Tips (American Source Books)
Claire Berman. Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive (Henry Holt & Co.).
Dr. Helen Susik. The Seven Secrets of Successful Care giving. Sun Coast Gerontology Center.
Nabil Hagag. When Cancer Strikes: A Tribute to the Family Caregiver. Nova Science Publishers, Inc.
Steve Reed. Pebbling the Walk: Surviving Cancer Care giving. Blue Heron Pub.
Joy Loverde. The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help. Times Books.
Chris Adamec, et al. The Unofficial Guide to Eldercare (The Unofficial Guide Series). Hungry Minds, Inc., 400 pp.
Russell CK, Phillips LR, Cromwell SL, Gregory DM. Elder-caregiver care negotiations as dances of dependency. Sch Inq Nurs Pract. Winter;13(4):283-98; discussion 299-304.
Family Caregiver Alliance. Selected Caregiver Statistics. https://www.caregiver.org/resource/caregiver-statistics-demographics/