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JULY 12, 2004
When A Parent Needs Help How to pull together an elder care plan that makes sense for you, your siblings -- and your parents Somehow, Doris Houston was holding it all together. The Champaign (Ill.) researcher in drug addiction was working full-time and completing a PhD at the University of Illinois. At the same time, she was caring for her teenage son. Then, starting about 2 1/2 years ago, she noticed that her widowed, 84-year-old mother, Anna, who lived in Chicago, was having memory problems. Houston first arranged for family members to stay with her mom. Then Anna suffered a stroke. Although her mother did not want to leave Chicago, Houston felt she had no choice but to bring her to Champaign. Her mother lives with her now, and Houston is juggling parenting, a full-time job, and her role as caregiver. Today more than than 30 million Americans are caring for an elderly parent, according to a study by the AARP and the National Alliance for Caregiving. As the nation ages, elder care is rapidly becoming the biggest family issue facing workers and their employers. According to one study, the value of this unpaid care exceeds $257 billion annually. Caring for aging parents is a responsibility none of us relishes. It can create emotional and financial hardship. You will almost certainly have to take time off from work, and the pressures of elder care can compromise your relationships with spouses, partners, and children. You will also tumble headlong into a world filled with such jargon as activities of daily living, skilled nursing facilities, and Medicaid spend-downs. Most painful of all, caring for a frail parent will force you to confront his or her mortality. "The hardest part," says Houston, "is coming to the realization that your parent is in the last stage of life. You know the inevitable is going to come." In this guide to elder care, BusinessWeek will help you think about ways to pull together legal, financial, medical, housing, and emotional solutions into a care plan that makes sense for you, your siblings, and your parents. POWER OF ATTORNEY The best advice is to get started before a crisis hits. As your parents age -- even if they are just in their 60s -- you and your siblings should discuss legal and financial matters with them. Ask your folks to prepare or update a will and designate a family member to handle medical and financial affairs. It's essential that you pull together two critical documents. The first, a living will, describes what kind of treatment a person prefers near the end of life or when they are too ill to make those decisions on their own. Ask an attorney to prepare one, or download one from a Web site such as agingwithdignity.org. The other document is a power of attorney. That will allow you or another family member to represent your parents' medical and financial interests. "It's absolutely critical," says Patricia Bray, who is caring for her 86-year-old mother in Florida. "Without it, nobody will talk to you. The doctor won't talk to you. You can't go to the bank." The family should also figure out in advance who will manage routine chores such as paying bills. "Parents and children have to decide who is going to be the financial caretaker," says Sharon Burns, coauthor with Raymond Forgue of How to Care for Your Parents' Money While Caring for Your Parents (McGraw-Hill). "Decision-making should be shared, but one child should be in charge of the tasks." Remember, your parents have the last word. They may make choices you do not like. For example, they may decide to reduce their taxable estate by distributing assets to family members when you would prefer that they hang on to their money. But legally the decisions are theirs. Your role is to make sure their wishes are met. You may sometimes hear that when caring for an aging parent, you turn into the parent. Don't believe it, say veteran care managers. You will always be the child and your dad will always be your dad, no matter how frail he becomes. "You can be responsible for your parent without becoming your parent," says Rosanna McLain, a caregiver adviser at Family Service of Champaign County's Senior Resource Center, a nonprofit. Advance planning makes these issues far easier. Having to confront them during a crisis can be overwhelming. Still, sooner or later you'll realize that mom can no longer care for herself, or you'll get that 5 a.m. phone call telling you your dad has just had a stroke. What do you do? "Get a grip," says Nora Jean Levin, executive director of Caring From a Distance (CFAD), a Washington nonprofit aimed at aiding long-distance caregivers. "If it is a medical emergency, you'll first need to get a handle on that. Once the crisis has passed, you can figure out the long term." First, you'll need to know what you are dealing with. If mom is in the hospital, catch doctors early in the morning when they are making rounds. Learn as much as you can about your parent's medical condition. If a physician won't communicate openly with you or your parent, get another doctor. For additional information, check out disease-specific Web sites. If you have not done it already, you'll need to sort out money issues. What assets does mom have? What is her cash flow -- pension and Social Security income, interest, and dividends? That will tell you a lot about what housing and other options are realistic. You'll need to think about Medicaid, too. That's the low-income health program run by the states which is increasingly paying for nursing care of seniors. Medicare does not pay for long-term custodial care. But Medicaid does foot the bill for those seniors who cannot afford it. You are almost always better off spending your parents' assets, rather than your own, on long-term care. But when their cash runs out, you'll need to decide: Will you let Medicaid fund their medical needs, or will you pay out of your pocket for higher quality care? Once you've pulled together basic medical, legal, and financial information, it's time to get outside help. Start with your local area agency on aging (AAA). These federally funded clearinghouses can get you a wide range of information on elder-care services. They can tell you about local home-health agencies or assisted-living facilities as well as refer you to free or low-cost government programs for housing, transportation, and meals. As government entities, AAAs can't recommend, say, a specific home-care agency. For that guidance, check with private information and referral services. You can get a list from your local aging office, or check the phone book under senior services. Many are faith-based nonprofits. The Episcopal and Catholic churches, for example, provide information through local organizations around the country. Their help is available to everyone, no matter what their religion. They can help you narrow your options, often by assigning a staffer to work out a detailed plan of care. That's what McLain did for Doris Houston. "My background is in social work," says Houston. "But with elder care, I was starting from ground zero. I didn't have a clue." With McLain's help, Houston pulled together a plan. She retrofitted a bathroom in her home and arranged for a homemaker who comes for a few hours five days a week to help with cooking and keeping an eye on her mom. And she found a state assistance program that helps with her mother's monthly drug bill of nearly $700. If you need even more help, you can turn to a private geriatric care manager. Wherever you get advice, you'll have to confront a critical decision: housing. These days, seniors can choose from a broad range of choices, including assisted living, nursing homes, and continuing-care centers. Which one you pick will largely depend on your parent's health and financial wherewithal. Involve your parent in the choice. If you decide a care facility is best, shop carefully. Talk to staff and residents about the facility and services. Be sure to inspect the residents' rooms, and don't be fooled by a fancy lobby. Despite all the commercial options, three-quarters of the elderly still live in their own homes or with family members. Elder-care experts agree that staying at home is not only possible but, for many seniors, is the best option. "It is familiar, it is close to friends and family," says Ellen Greenberg, director of the Senior HelpLine of the Jewish Council for the Aging in Rockville, Md. "If you take that away, it is a loss." Staying at home takes effort, however. It requires a caregiver to pull together many different services into a coordinated plan. By contrast, an assisted-living facility offers one-stop shopping for nearly all of a senior's needs. Home care may also require renovations to improve safety. According to Stephen Hage, president of Strategies for Independent Living, a Takoma Park (Md.) construction company that remodels homes for the frail elderly, the costs are modest. For someone who is not wheelchair-bound, a home can be retrofitted for less than a few thousand dollars -- by installing safety rails, eliminating raised thresholds between doors, and simply moving furniture and doing away with throw rugs. "Fall prevention is key," Hage says. Still, staying at home does not always work. As medical needs increase and more nursing care is required, costs can become prohibitive. For seniors living alone, loneliness can be a huge problem as well, especially if they can no longer drive and their own friends die or move away. A parent's loneliness is one of many challenges for the 6 million caregivers who live an hour or more from their ailing or frail relatives. Ask Patricia Bray, an international tax attorney at the Internal Revenue Service. Bray lives in Vienna, Va., but her mother, Grace Cooper, is in Merritt Island, Fla. Cooper, who will turn 86 in August, ran her own property management business until last year. But diabetes and pneumonia hospitalized her twice in late 2003. Those problems have been compounded in recent months by memory loss. Bray, an only child, at first relied on relatives in Florida to keep an eye on her mother. But after her mom's second hospitalization, Bray realized her mother's needs were more than her relatives could manage. With the help of a care consultant in Virginia and a geriatric care manager in Florida, Bray found an assisted-living facility not far from her mother's home. She also discovered a financial assistance program for military widows such as her mother. The stress of overseeing care from 1,000 miles away is tremendous. "I sweat bullets about running out of money," Bray says. "And I worry that I'm not being sensitive enough to what my mother is really feeling." Although she has a care manager keeping an eye on things, Bray flies to Florida every three weeks to check on her mother. CFAD's Levin says it is natural for children who live far from their parents to visit with a full calendar of things to do: Consult with the doctor, pay the bills, make sure the home health aide is working out, or check with the management at the assisted living place. But she warns to be careful about "swooping in with a list" only to leave when the chores are done. Reserve some time for quietly sitting and visiting, Levin advises. Elder-care experts say stress can take a huge physical and emotional toll on caregivers. Helping a frail parent forces families to confront sensitive issues they may have spent decades sweeping under the rug. Resentments among parents and their children, sibling rivalries, feelings of guilt, anger, and fear -- it all bubbles up, especially in the face of a medical crisis. The opportunity to care for an aging parent can also be a blessing. It can bring parents and children closer and help adult children discover strengths they never knew they had. But it is still hard for everyone involved. Caregivers can make their lives and the lives of their elderly parents much easier by seeking out help. Remember, whatever your financial and emotional resources, you are not alone.  By Howard Gleckman
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