In an ideal world, your mom and dad would live to a robust old age and never need your help beyond programming their DVR. In reality they'll likely require significant support at some point. A bad fall, a stroke, or a debilitating illness might mean you'll have to set them up in a nursing home or an assisted living facility. But over half of people who need care receive it at home—and 80 percent of the time family and friends provide it. Another 25 percent live in the home of the caregiver, usually an adult child.
You can guess what this means for your life: Forty percent of women looking after parents are forced to switch to part-time work or stop altogether, leading to financial strain. There's a personal toll as well. Half of those same caregivers report having to give up exercise, vacations, hobbies, or social activities. At the same time, though, many women say that it's a life-enriching responsibility, and that there are lots of ways for you to meet your parents' needs and your own.
Scenario: Mom Comes Home
Rosa Hymes was already living with her daughter, Alexa St. Julian, in Pearland, Texas, to be there after school for Alexa's two kids, then 11 and 13. But everything changed just months after Rosa moved in when she had hip replacement surgery. Complications took a year to resolve and ultimately resulted in an amputation. Today, Rosa is wheelchair-bound and still lives with Alexa and her family.
The Solution Alexa does most of the caregiving for her mom, but she also hired an aide who comes three times a week to assist Rosa with bathing, laundry, and other everyday needs. That's when Alexa, who's a real estate agent, crams in as much work as she possibly can. "We have not been on one vacation as a family since all of this started," says Alexa. "I've missed some of the kids' school events. Yet I'm a stronger person. And I still have my mother, who's a gem."
Costs The aide charges $100 a day. Most of Rosa's hospital bills were covered by Medicare, although some medication, including $7,000 worth of at-home IV therapy, was not and ended up on Alexa's credit card. Alexa's income has also dropped substantially because of the time she took off during Rosa's hospitalizations.
Key to Success Alexa accepts every offer of help that comes her way. "Whether it's a relative flying in or a church member bringing us dinner one night, I say yes," she explains. "I have a very supportive husband, and my sister has been there for all of the big medical decisions." Alexa has also given her house keys to two trusted neighbors. "If I'm out and can't reach my mother," she explains, "I'll call and ask them to check on her."
Scenario: Alone, with Help
After their father died suddenly from a stroke, sisters Alison Trost of Mendota Heights, Minnesota, and Lynn Pitet of Cody, Wyoming, worried about their mother, Helen Trost. She lived alone in her home in Mankato, Minnesota, about an hour and a half away from Alison's house and a 14-hour drive from Lynn's. Helen was determined to stay put, but her eyesight was poor, so she had trouble taking her medications and couldn't drive. "My mother had a busy life with lots of friends and activities, but Lynn and I felt we needed to keep better tabs on her," says Alison, who is a part-time dental hygienist. (Lynn works full-time at the Buffalo Bill Historical Center in Cody.)
The Solution Initially, the sisters hired a company, QuietCare, which placed monitors throughout their mom's home to keep track of her movements and sent daily reports via e-mail. There was also a pendant button Helen could push in an emergency, and she had an aide coming twice a week to read to her and prepare some meals. Alison's husband installed a telephone in every room of the house. The arrangement worked well for two years, but as Helen became more frail, Alison and Lynn convinced her to move to a senior living apartment in St. Paul. Helen still has a great deal of independence, but there's more supervision and plenty of help nearby. She's now just four minutes from Alison, who visits three times a week. Lynn still calls every morning to remind her mother to take her medications.
Costs The QuietCare plan (quietcaresystems.com) was $500 a month, not covered by insurance. The apartment is about $1,800 a month, with an extra $40 for an emergency pendant.
Key to Success "It's so important to talk to your parents before a crisis occurs," says Lynn. "You don't want to be forced into making a decision in a hurry. Plan ahead when you have the luxury of time to sort things out." To find out about nursing home options, check out the U.S. Administration on Aging's eldercare locator at www.eldercare.gov.
Scenario: Maximum Assistance
Della McCann had cared for her father until his death and expected she'd do the same for her mother, Wendy BowKwong, who was living with Della, her husband, and their two kids. "In Chinese culture it's normal for the generations to be together," says Della, who resides in Mamaroneck, New York. In the years that followed she nursed Wendy through a heart attack, depression, and colon cancer, all while her children were tweens. But when Wendy developed dementia and her behavior became erratic, Della felt she couldn't care for her at home.
The Solution Della enrolled Wendy in an adult daycare program, but the center couldn't handle her, so the doctor recommended a nursing home. "At first I resisted, and I cried a lot," Della recalls. "I'm an only child, and I was brought up to believe that you didn't have someone else take over your parents' care. It just isn't done. But I worried about my mother's safety, and about the effects of caring for her on my family."
Costs A nursing home room is about $5,500 to $6,500 per month. In Wendy's case, with her savings exhausted, Medicaid is now covering the fees, as it does for 70 percent of nursing home patients.
Key to Success Della makes the 10-minute trip daily to visit her mother. "You need to be involved with your parent's nursing home the same way you are with your kid's school," she says. "I'm my mother's advocate. Also, people should talk to others in the same situation, and if that doesn't help, get therapy. There's so much guilt associated with these decisions. The worst day of my life was when I told my mother she should go into the nursing home. But my relationship with her got so much better once she settled in. It's such a loving place. We even had my daughter's wedding there so my mom could share it."
Scenario: Everyone Pitches In
After Joan Rodriguez's mother, Alicia Ferguson, was diagnosed with Alzheimer's disease, Joan and her four siblings took turns staying overnight with Alicia in her home for a year. But as the disease progressed, so did her mom's needs. Joan had recently retired early from a career in long-distance communication to start up her own business. Instead, she decided to care for her mom in her home in San Jose, California. She was able to do that for eight years, until her mother died.
The Solution When her mother moved in, Joan's two daughters were in their early 20s and her son, Darin, was just 13. "The way I dealt with all of the different roles in my life was simply to include my mother in as much as I could," says Joan. "When Darin was young, my mother cared for him a lot while I worked so he had a special bond with her. He never squawked about having her with us at different functions."
Costs Though most medical needs were covered by insurance, Joan didn't work outside of her home while her mother lived with them, which strained finances dramatically.
Key to Success The family became a team. When Alicia was diagnosed, Darin, who was away at college, transferred to a local school so he could live at home and help. Joan's siblings relieved her at least one day a week. Helping her mother, Joan says, changed her life. "I used to work long hours and always wanted more of everything," she says. "I learned to slow down and appreciate a different kind of 'more.' I was able to help care for my three grandkids. And I discovered a love for gardening. I'm so grateful for the time I had with my mother."
How to Plan for the Future
Yes, your parents deserve to have the best. But it's also essential to take steps to manage the overall cost of care, for their sake as well as yours.
Ask the Hard Questions
It's important to know what care arrangements your parents might want, how much money they have, where it is, and how you can access it in a crisis, says Dan Taylor, author of The Parent Care Conversation (Penguin). You should also have a list of essential information (keep it in a safe place), like bank account numbers, computer passwords, and names and contact numbers for their lawyer, accountant, financial adviser, and doctors.
Arrange Legal Backup
A durable power of attorney gives you or someone your parents choose the ability to make decisions if they can't. There should be one for healthcare and one for legal and financial decisions. Locate a lawyer through the National Academy of Elder Law Attorneys, Inc. at naela.org.
Discuss Health Insurance
Most older Americans are covered by Medicare, and some have additional insurance, but both are limited. A long-term care insurance plan can fill in the gaps. For more info, go to the National Council on Aging's benefitscheckup.org and medicare.gov. Those in a low financial bracket may be partially or completely covered by Medicaid. Visit Centers for Medicare & Medicaid services at cms.hhs.gov.
Insist on a Living Will
Your parents should appoint someone to decide when to stop life support. The nonprofit organization Aging with Dignity offers single copies of living will forms called "Five Wishes," which are accepted in most states, for $5 each. Go to agingwithdignity.org.
Originally published in the July 2010 issue of Family Circle magazine.