More resources help caregivers help themselves
Holidays can bring additional stress to those who care for ailing loved ones

By Laura Landro

The Wall Street Journal
http://www.baltimoresun.com/business...06,print.story

December 3, 2007

When his wife, Chris, was diagnosed with breast cancer, southern California software developer Dave Balch took on a new full-time job: caregiver. During nine months of surgeries, chemotherapy and radiation, he changed her wound dressings, emptied surgical drains, administered medications, and washed his wife's hair until it fell out, often struggling himself with fatigue and mood swings, and finding little time for work.

Balch, 59 years old, is one of the estimated 45 million people who provide care for a loved one, including those with the most devastating diseases such as cancer, Alzheimer's and Parkinson's. Studies are increasingly showing that caregiving responsibilities can exact a drastic emotional, physical and financial toll, with caregivers experiencing high rates of depression, stress and other physical and mental health problems.

But evidence is also mounting that caregivers can cope better when they receive counseling sessions, in-home skills training, support groups, and assistance juggling care responsibilities. For example, researchers at New York University School of Medicine who studied a group of caregivers between 1987 and 2006 reported recently that even a short period of counseling can have a long-term beneficial impact on the emotional well-being of people caring for spouses with Alzheimer's disease.

Mary Mittelman, a research professor at NYU who led the study, is conducting two studies for people caring for a parent with Alzheimer's and a third that will provide couples counseling for people dealing with early-stage Alzheimer's. Groups such as the Alzheimer's Association provide caregiver resources, including tips on how to cope with depression.

Experts say the burdens of care can often seem most trying during the holidays, when everyone else seems to be celebrating, and meeting the expectations of family gatherings can just add to the stress. A number of groups are offering advice on how to cope during the holidays; the Web site CancerCare.org, for example, offers a podcast of a workshop on coping with a loved one's cancer, including advice on scaling down family gatherings, inventing new and less elaborate celebrations, or exchanging holiday wishes via phone, e-mail or videoconferences.

Balch, whose wife is still fighting recurrences of her cancer, has tapped his own experience to help other caregivers. He is writing and publishing a book, "Cancer for Two," and launching a Web site, thePatientPartnerProject.org, which allows caregivers to set up their own Web pages where friends and families can log on to read a single report with updates on the patient's progress. Balch says the Web site enabled him to eliminate time-consuming and stressful phone calls conveying the same details over and over again. Other groups, such as Carepages.com, offer similar services.

One of the most important lessons for caregivers is to keep one's own stress manageable, says Balch, who speaks about caregiving around the country in a program sponsored by biotech firm Amgen Inc. "It's like they say on the airlines," says Balch. "You need to secure your own oxygen mask before attempting to help others."

Recently, AARP, the Washington-based advocacy group, and the nonprofit coalition National Alliance for Caregiving released a survey of caregivers with Evercare, a unit of insurer UnitedHealth Group. Respondents reported that more than half of those caring for a loved one 50 or older are spending more than 10 percent of their annual income, sacrificing their savings, reducing personal care, and often quitting their jobs. A study last year estimated the total annual cost to employers for full-time employees with intense caregiving responsibilities at $17.1 billion.

A number of lobbying efforts are under way to secure more funding from the federal government for programs to help caregivers, and some experts are calling for formal assessment programs that could be used by health-care organizations to determine what kind of support caregivers may need. In the meantime, a number of Web sites offer links to agencies and organizations with free resources for caregivers.

More hospitals are providing services directly to families who will have to care for loved ones once they go home. Northern Westchester Hospital in Mount Kisco, N.Y., is dedicating a new caregivers' center that will be used for individual and group counseling. A new program will include 15 volunteer Caregiver Coaches -- people with firsthand experience with caregiving will team up with social workers to help family caregivers coordinate friends, relatives and neighbors to assist with shopping, carpooling and everyday duties.

Hospital administrators say caregivers can help educate medical staff about the challenges family caregivers face. Catherine Lyons, associate director of clinical services at the University of Rochester Medical Center's cancer center, says she invited Balch to speak to 150 nurses about the ordeal he went through with his wife, "and you could have heard a pin drop," she says. "The nurses may be used to dealing with the complications from chemotherapy or infections, but it really helped them understand the burden that is on the family."

Experienced caregivers are also being tapped to help others new to the role. Dave Rodgers, a retired Kodak corporate finance staffer, agreed to join the patient and family council at Rochester after caring for his wife during her two bouts with cancer. Volunteering 20 hours a week, he makes the rounds of rooms where patients are receiving treatment and, with some guidance from the nurses, offers assistance to patients and families. Often, family caregivers will only talk to him when the patient gets called into an area such as radiation where they can't follow.

"They don't want to show how afraid they are around the patient, but as soon as they open up, it's so clear there's a real need to address their issues," says Rodgers.

Safeguard Your Loved Ones

Six things you need to know when hiring a home health-care worker.
By Sarah Kliff
http://www.newsweek.com/id/72687
Newsweek Web Exclusive

Updated: 2:48 PM ET Nov 28, 2007

Finding a good home health-care aide is both challenging and essential. "You want someone who is organized, gentle, who has a sense of importance and demeanor, as well as a sympathetic attitude," says Mary St. Pierre, vice president of regulatory affairs for the National Association of Home Care & Hospice. But you also need someone who has a clean background check and solid references. Searching for questions to ask your prospective home health-care provider? Look no further:

Is the agency licensed and accredited? Your home health-care aide should be part of an agency licensed by the state, says St. Pierre. Do not hire a caregiver through a nonlicensed agency. Contact your state department of health for a list of agencies they have licensed. Look for accreditations from organizations like Joint Commission, an independent nonprofit that accredits and certifies nearly 15,000 health-care organizations and programs in the United States.

How established is the agency? Research the agency at Home Health Care Compare, a service provided by Medicare that allows you to compare local home-care agencies on a variety of characteristics. Find out what services they provide, the number of patients served, as well as measures of their success with treatment, such as the percent who got better at taking their medication regularly or were short of breath less often.

What kind of background checks does the agency do? Don't just ask if the agency does a background check, get specifics on exactly what they check for. Some agencies may just run checks on elder and child abuse, says Pierre, but not on other criminal activities. Make sure that the provider you work with checks all aspects of their aides' backgrounds. You want your home health-care aide to have a spotless record.

What are the specifics of an agency's service? Aside from the larger questions about an agency's accreditation and licensing, you also need to dive into the details. Find out what procedures a provider has in place to handle emergencies. Are its caregivers available 24 hours a day, seven days a week? Also, will they be sending the same person each day or will it vary? Consistency is key to good care, but many agencies do not always send the same aide to the same patient. Make sure that yours is one that does.

Who are the references and how do they check out? Getting the references is crucial, but so is calling them. "Call references to determine whether in their previous employment they showed good judgment and were gentle in their approach," says St. Pierre. "Make sure they were conscientious in carrying out their responsibilities." Also, check in with some of the agency's other clients to see how pleased they are with its service.

What do you think of your provider? While it's definitely not the only question, it is a key one: do you and your family member, well, like your home health-care aide? Is it someone who you feel you could have a good working relationship with? "You're hiring someone to take care of your family member," says St. Pierre. "It has to be someone you're comfortable working with."

For more resources on hiring a home health care aide, the National Association for Home Care & Hospice maintains an extensive set of resources that are very helpful. The AARP also provides a brochure on selecting a caregiver.

Carolyn...as always, excellent information...and particularly important for me as a caregiver...thank you.

Therese