Help for family caregivers
When the many hats caregivers wear — nurse, physical therapist, financial custodian, emotional sounding board — begin to feel heavy, a host of resources is available to provide relief. But sometimes figuring out what help you need and where to find it can be nearly as overwhelming as the exhaustion that comes with caregiving.
“There are a lot of services available if people would just do their homework,” says Clarice Dowdle, author of “Time for the Talk: The Ten Step Plan for Effective Senior Caregiving Today.”
“You’ve got to go online, you’ve got to dig and you’ve got to ask a lot of questions. But if you work hard at it, you can find this information.”
Bankrate provides the resources you need to get informed and build your caregiver support network.
Talk things over
The dialogue between you and aging family members about their care needs, wishes and finances should start as soon as possible, says Dowdle, whose newly released book was inspired by her own role as a caregiver. She advocates arming yourself with information before your loved one comes home from the hospital or requires care. Find out what doctors the family member is seeing and what medications he or she is taking — including the dosages and possible side effects.
Do a financial review to determine what care and living arrangements are affordable with the care recipient’s current resources. Get a list of the Social Security, bank and investment account numbers in case you have to take over financial matters.
You also need to have the hard talk about your loved one’s wishes regarding end-of-life issues such as life support, organ donation and even funeral arrangements, Dowdle says.
“Having this discussion proactively instead of reactively, and before the emotion and crisis sets in, is vital,” Dowdle says. “Then everybody has a cool head and can calmly sit down and have this discussion before it turns into a crisis.”
Know what you’re getting into
Family caregivers are assuming more and more of the tasks that used to be handled by health care professionals, according to a national survey by AARP and the United Hospital Fund, a nonprofit organization focused primarily on health care advocacy in the state of New York. The report, “Home Alone: Family Caregivers Providing Complex Chronic Care,” was released in October 2012.
Nearly half the family caregivers surveyed said they perform medical or nursing tasks for people with more than one chronic physical or cognitive condition. Among all those doing health-related tasks, 78 percent were managing medications — and largely learning to do so on their own. Other frequently cited duties included preparing food for special diets, performing wound care and using health monitors.
Enlist help from the pros
The AARP/UHF report found that family caregivers received little training, even for some of the more difficult and complex medical or nursing tasks they perform. Health care professionals may be less than thorough when providing instructions, and family caregivers often feel too overwhelmed and intimidated to push for more answers, says Carol Levine, director of the Families and Health Care Project at UHF and one of the co-authors of the study. She recommends bringing another person along to hear hospital discharge instructions, take notes and ask questions that the caregiver might forget under the stress of the moment.
Levine, who spent 17 years caring for her disabled husband before he died, advises caregivers to know when to say “no.” After her husband had back surgery, a home health nurse demonstrated a messy wound-cleaning procedure that she said Levine would have to take over from then on. But when Levine protested that she wasn’t ready for that job, the nurse returned to do the procedure until Levine felt comfortable enough to do it. “Saying ‘no’ is a good way of getting people’s attention,” she says.
Take a training class
A number of Area Agencies on Aging offer free caregiver classes. To locate your agency and find out if courses are available, go to the National Association of Area Agencies on Aging at N4A.org.
American Red Cross chapters in some cities offer a series of free family caregiving workshops covering such topics as home safety, how to safely position and help your loved one move, and legal and financial issues.
“When I was teaching family caregiving courses, I always said that we would customize them to anything (participants) wanted, but that we really needed to start with safety,” says Linda MacIntyre, a registered nurse and chairwoman of the Red Cross’ National Nursing Committee, who has taught family caregiving classes in the Midwest region.
To find out if Red Cross caregiver training is available in your area, go to RedCross.org/takeaclass.
If you’re hiring a home health care service, ask if the company offers caregiver classes or one-on-one training at home.
Get a financial break
You may be able to claim a tax deduction for money you spend on a loved one’s medical expenses, including long-term care insurance. Family members who jointly provide more than 50 percent of the financial support for an aging relative can take turns claiming the relative as a dependent on their tax returns. Only one person a year can claim the exemption. To get this benefit, you must file Form 2120, Multiple Support Declaration, with the Internal Revenue Service.
The Medicaid Cash & Counseling program and similar waiver programs available in some states may provide direct payments to family caregivers for their time. Check out CashAndCounseling.org to find out if your state has such a program.
Caregivers for veterans can access the Department of Veterans Affairs’ caregiver support line at Caregiver.va.gov or by dialing (855) 260-3274, where they will receive information about a range of free home and day health services for veterans.
Take care of yourself
Caregivers are at risk for stress-related illnesses, but they often ignore their own health.
“Caregivers are usually very generous and giving, and they usually sacrifice their own health so that they can care for their loved one,” MacIntyre says. “Sometimes caregivers won’t follow up with their own preventive medical appointments. They may not get a mammogram or have their prostate screened.”
Taking time out for yourself is essential for your physical and emotional health. Adult day care and respite care programs allow caregivers to have an occasional break from their duties.
For caregivers, MacIntyre says, “It’s not just OK to ask for help, it’s necessary for their own health and for them to continue in this role.”
Find resources online
Plenty of nonprofit organizations offer resources to tap, including AARP’s Caregiving Resource Center, which is an excellent place to start to gather information (AARP.org/home-family/caregiving). United Hospital Fund’s NextStepInCare.org provides guides on such topics as medication management as well as advice in English, Spanish, Chinese and Russian.
The National Alliance for Caregiving (Caregiving.org) is a nonprofit coalition of public and private caregiving organizations that conducts research and policy analyses to advance caregiving issues. The National Association of Area Agencies on Aging supports a national network of 629 Area Agencies on Aging, or AAA. Chances are good there’s an AAA located near you.
In addition, check out the Eldercare Locator website (at Eldercare.gov), a public service of the U.S. Administration on Aging, to find help in your community. Its toll-free number is (800) 677-1116. Also, Medicare devotes a Web page for caregivers at Medicare.gov/caregivers.