If you're caring for a chronically ill or disabled friend, child or relative, you've joined one of the biggest -- and most important -- workforces in the country. According to the Family Caregiver Alliance (FCA), an estimated 43.5 million Americans have taken on this vital job. They fix meals, make doctor's appointments, do the laundry, and generally make sure their frail or sick relatives or friends can live as well as possible for as long as possible.
Caregivers have every right to feel proud of their role. Without them, untold numbers of people would have to move to nursing homes or other facilities. Of all of the adults who receive long-term care at home, two-thirds depend solely on the help of friends, family members, and other informal help. And without caregivers, the health care system would likely collapse from the financial burden. As reported by the FCA, it would cost over $470 billion each year to pay for the services that family caregivers provide for free.
But caregivers also have every right to feel overwhelmed, worried, and confused. As you continue your on-the-job training, you're bound to face many caregiving dilemmas. You want your relative to get the help she needs, but you don't want to give up your life or drain your finances in the process. Learning the basics about your job and the resources available to you -- a sort of Caregiving 101 -- can help you succeed at your new position.
One of your first tasks is to take a complete inventory of your relative's situation. Does she simply need some help with daily chores? Does she just need some company? Or does she need someone watching over her throughout the day? The answers to these questions shape the big decisions that will undoubtedly emerge in the near future.
Some of the biggest decisions involve housing. If she's no longer able to fully take care of herself, she may need help from in-home caregivers, who may include family members. But if it's not possible to get in-home help, she may need to move into an assisted living facility or nursing home. Or even, possibly, your house.
As part of this inventory, you'll have to take a close look at her finances. If you are the primary caregiver, talk with your relative about giving you durable power of attorney. (Above all, don't wait till the last minute to have the conversation about who your relative wants to manage finances if she becomes unable to do it herself.) As her representative, you can gather her bank statements, bills, insurance policies, and other vital documents for review; otherwise, you'll need to review them together. You may need to be added to her checking account in order to pay bills or initiate arrangements to have bills automatically paid from her account. If you need to do this, it's a good idea to consult with an attorney or bank official first.
You should also make sure that she's getting all of the benefits she's entitled to, including social security, pensions, Medicare, and veteran's benefits. A financial consultant can also help you investigate reverse mortgages and other possible ways to find extra money to pay for care so that she can remain in her home; a reverse mortgage or home equity line of credit on her home may also help pay for caregiving if she moves into your home. In addition, if she has long-term health insurance, read the policy carefully: Some LTC insurance pays relatives for caregiving. (A social worker can be very helpful in these circumstances; the patient's doctor may be able to give valuable advice as well.)
Make sure your relative has an up-to-date will or living trust. She should also have a "living will," a document that expresses her desire for end-of-life care. If you can foresee a time when she will no longer be able to make her own medical decisions, ask her to give you or another trusted person "durable power of attorney for health care," the legal authority to choose treatments. (Doing all this might well give you the incentive to get your own affairs in order, too.)
From here on out, you'll have to develop a close relationship with your relative's medical team, including her doctors, nurses, pharmacist, and, if possible, a representative from her insurance company. Doctors and nurses can provide important instructions on topics ranging from prescription medications and insulin injections to mattress pads and bedpans. A pharmacist can review your relative's medication list to help avert dangerous interactions between drugs and may be able to find ways to reduce the costs of prescriptions. Going with your loved one to doctor appointments and taking notes is also an important role for caregivers.
Keep in mind that your relative will be more likely to get the coverage she deserves if you can make contact with the person at the insurance agency who is in charge of her case. Familiarize yourself with the company's guidelines and the fine print of all your relative's policies. If you feel that your relative has been unfairly denied coverage, get on the phone and make your case.
Opportunities and obstacles
You also need to take a close look at your own situation. The National Family Caregivers Alliance recommends examining your strengths and weaknesses, as well as opportunities and threats. Call it a SWOT inventory (Strengths, Weaknesses, Opportunities, and Threats). Your strengths might include your work ethic or your generosity. A list of weaknesses might include a lack of knowledge about healthcare. (If it does, don't worry. You'll get up to speed.) Opportunities might include other close relatives who are willing to help out or a new retirement community opening up down the road. Limited finances and time crunches are common threats. Putting these issues in writing -- and updating them as your situation changes -- can help you keep a clear perspective on your job.
When taking stock of available opportunities, be sure to check out the caregiver support services available in your area. Meals on Wheels, adult day care, home health care agencies, and other programs can make your job much easier. To learn about services near you, contact your local Agency on Aging or go to http://www.eldercare.gov.
If you have close family members living nearby, don't hesitate to ask for help. You may have to try more than once, and you may have to be detailed and specific. In a diplomatic way, tell your brother or sister exactly what needs to be done. And let them know that you can't do everything, a truth that all caregivers eventually have to discover.
Caring for yourself
As a dedicated caregiver, it's easy to push yourself too hard and stretch yourself too thin. If you're not careful, the strain can take a serious toll on your health. Various surveys have found that roughly half of all caregivers suffer from clinical depression. As reported by the Family Caregiver Alliance, the mortality rate for elderly caregivers is 63 percent higher than it is for non-caregivers of the same age.
If you don't find a way to care for yourself, you'll never be able to give someone else your best effort. If you feel stressed out or depressed, talk to your doctor about possible therapies. Be sure to get regular exercise, eat well, get plenty of sleep, and find a way to take an occasional break. While it may be true that no one else can offer the kind of care that you provide, it's also true that someone else's efforts will likely be good enough for a long weekend.
No other job out there compares with caregiving. You never applied for the position, and you probably don't have extensive training and education in the caregiving field. Nobody will ever pay you what you're worth, and even your relative may not be able to find enough words to express her gratitude. Despite all that, you accepted the job, for one compelling reason: You can do it.
Area Agency on Aging
For information on support groups, respite providers, and other caregiving services, use the AAA's Eldercare Locator: (800) 677-1116
Family Caregiver Alliance
National Caregivers Library. Has checklists and forms you can fill out to gauge your relative's financial health and expenses, housing and health care needs, and other caregiving issues.
Family Caregiver Alliance. Fact sheet: selected caregiver statistics.. https://www.caregiver.org/caregiver-statistics-demographics
National Family Caregivers Association and the National Alliance for Caregiving. Top 10 questions. http://www.familycaregiving101.org/top_10/
National Family Caregivers Association and National Alliance for Caregiving. Navigating the healthcare maze. http://www.familycaregiving101.org/manage/maze.cfm
Family Caregiver Alliance. Taking care of you. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847
National Caregivers Library. An overview of guardianship. http://www.caregiverslibrary.org/Default.aspx?tabid=541
National Caregivers Library. Basic financial caregiving. http://www.caregiverslibrary.org/Default.aspx?tabid=630
Federal Deposit Insurance Corporation. FDIC consumer news. Financial caregiving: a survival guide. http://www.fdic.gov/consumers/consumer/news/cnsum97/fincare.html
Family Caregiver Alliance. Fact sheet: durable powers of attorney and revocable living trusts. http://www.caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=434
Family Caregiver Alliance. A population at risk. http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1822