It can be overwhelming, seeing someone you love debilitated—either gradually or dramatically—by aging and illness. They need help, they need care, and if statistics prove anything, that job could fall to you. Caregivers are found in one in five households in the United States, according to a 2004 report by the AARP. Eighty-five percent are family members, friends, and neighbors unpaid for the job. And as the healthcare system advances along with life expectancy, the Centers for Disease Control expect an 85 percent rise in family caregivers between 2000 and 2050. Though many who undertake caregiving are unsure at first what they’re getting into, those who have been there are often eager to share stories of its challenges and rewards. We’ve gathered some of their essential tips on how to face what comes next. “There’s no way that anyone’s ever prepared,” says Debby Halpern, communications director for the National Family Caregivers Association (NFCA). But you can start laying some groundwork and finding resources for the journey ahead.
1. How, and when, should we talk about this?
In a word: now. While not an easy subject to approach, talking with your loved ones about caregiving is better than waiting until something actually happens. One thing that needs to take place is assessing a person’s health through a geriatric exam, says Lisa Little, director of senior care and physician relations at Des Peres Hospital. Try a physician who specializes in gerontology, recommends John Riley, of John Riley Elder Care & Cost Consultants, Inc., or the Memory and Aging Project at Washington University in St. Louis. Even if your family member’s health is strong, you’ll have a baseline for moving forward. And if his or her health has been altered by a specific illness, says Mark Esker of the St. Louis chapter of the Alzheimer’s Association, it’s important to understand exactly what’s happening and what you need to do to keep that family member safe and well.
2. What are some of the ways you can prepare?
The NFCA and the National Alliance for Caregiving offer an easy-to-navigate source called “Family Caregiving 101” at familycaregiving101.org. This website provides tools for everything from assessing where you are on the caregiving journey to understanding how to navigate the healthcare system. The NFCA recommends checking the phone book for local resources. Those include the Department of Health, the Social Security Administration, the Department of Mental Health, social-service departments at area hospitals, and local chapters of disease groups. Althea West, a local geriatric-care manager, says people in her profession can help clients make sense of the legal, medical, financial, and emotional landscape of caregiving. In the St. Louis region, costs vary from $75 to $105 an hour, West says. For help finding a care manager, visit the National Association of Professional Geriatric Care Managers’ website at caremanager.org.
3. When, or at what level of care, should you step in?
The answer, according to many experts: when safety becomes an issue. If the family member is living alone, what effect will their illness have on their safety? Is there a danger of leaving the stove on or eating spoiled food? Are they in danger of falling down stairs or tripping over rugs and furniture? Are they still capable of driving? In Missouri, family members, doctors, and police concerned about that last example can complete a driver condition report confidentially (dor.mo.gov/mvdl/drivers/forms/4319.pdf), and the individual may be reevaluated and could have his or her license revoked. But safety’s not the only factor, says Halpern. Examine the family member’s quality of life, too, to help determine what’s needed next, from more frequent visits to in-home care or beyond.
4. What will the living situation be?
“It’s not as simple as ‘Come live with me, and we’ll be a happy family,’” says Little. That’s why Riley recommends a trial run before houses are sold and moves are made permanent. Does the caregiver work? What will happen to the family member during the day? Have you considered how the move will affect not just the family member’s life, but also yours and that of your family? If bringing the family member into the home is the best solution for your family, the same safety concerns need to be addressed, as they would in that person’s own home. Apart from hosting an ailing family member at home, many other opportunities exist, including assisted living, retirement communities, and nursing homes (see sidebar). One recently launched resource is the NAELA Senior Housing Locator, a collaboration between SNAPforSeniors (snapforseniors.com) and the National Academy of Elder Law Attorneys (NAELA).
5. How will you pay for long-term care?
Medicare and private health insurance don’t usually pay for long-term care. And really, no single plan will fit all situations. Riley often recommends long-term care insurance to people in their fifties and sixties, as long as they have enough time to research the subject. “People need to be informed before they purchase,” he says. Often he sees people who’ve purchased too little or too much coverage—so it’s not as easy as picking car insurance. Also, of those who consider long-term care insurance, Riley says only about half his clients follow through, because many find the monthly premiums of $150 to $200 too high. But the advantages, he says, are freedom of choice when the time comes to look at long-term care facilities and—because the insurance allows you to pay privately longer—the opportunity to secure a placement in a higher-quality establishment. Long-term care insurance can also help pay for in-home care, but for that, there are a number of other options as well, including reverse mortgages, Medicaid, and Medicare. You can compare their benefits and limitations at medicare.gov/longtermcare/static/payingoverview.asp. Last, geriatric care managers often work with elder-law attorneys and can help steer you through the sometimes intersecting pathways between Medicare, Medicaid, and veterans’ benefits.
6. Do you have the right legal measures in place?
Power of attorney and medical power of attorney, two separate issues, both share one aspect, says Esker: They speak of trust. They tell institutions that the person being cared for has confidence in the caregiver. Establishing these two powers needs to happen early, when the loved one can help with the decision. “Most people wait entirely too long,” Esker says. To establish power of attorney, the family member needs to meet with a lawyer and have a private interview, says Julie Berkowitz, a local certified elder-law attorney. Once the lawyer understands the person’s wishes to give power of attorney, he or she will draft a document, meet again, and have that person sign it. That’s it, Berkowitz says: “Basically, these things are legal permission slips.” Establishing power of attorney now means you can avoid guardianship, says Maggie Cody-Reckert, director of Medicaid planning at The Next Step/ElderAssist in West County. Guardianship is determined when a person is no longer deemed competent. It’s decided by petitioning through a court. Downsides include attorney fees, annual court reports, and court-monitored expenses.
7. Who makes up the community surrounding you and the person you’re caring for?
Most people assume they can do everything by themselves. That’s because they don’t understand the full extent of what they’re about to undertake. Many organizations, such as the Alzheimer’s Association, offer care consultations both in the office and at home for $50 to $100; such meetings educate family members about caregiving and their loved one’s condition and provide a forum for discussing care options and legal and financial issues. The Alzheimer’s Association also offers a free online private group calendar you can set up to coordinate transportation, medical appointments, and legal information with family members at alz.org/caresource. Many caregiving communities exist both online and in the physical world, including churches and groups specific to medical conditions. And caregiving is no excuse for giving up a social life, Little adds. In fact, it’s critical to have social outlets outside the home, for the sake of both the caregiver and the person receiving the care.
8. Do you know how to be an advocate?
Unless you happen to have an advanced degree in whatever illness plagues your family member, it’s likely you don’t know much about it. But you’ll need to—and you’ll need to learn how to become an advocate for your loved one. For many illnesses and for aging issues in general, there are many resources that provide support and help you learn more, including the St. Louis Area Agency on Aging and the Mid-East Area Agency on Aging. Also, maintaining open and regular communication with your family member’s doctor is essential, as is establishing a comfort level that enables you to challenge their care if something doesn’t seem right. Learn about all the medications your family member is on, and keep the doctor aware of what’s happening. You also may need to speak to insurance companies and staff on your loved one’s behalf at various points. On its website, the NFCA offers tip sheets to help keep track of medications and communicate symptoms during a crisis.
9. Are you prepared to take care of yourself while caring for others?
“It’s your responsibility as a family caregiver,” says Halpern. The stress felt by caregivers can lead to depression. The Alzheimer’s Association recommends getting outside help, taking care of yourself, planning ahead, being realistic about what’s happening, and, rather than feeling guilty, giving yourself credit for becoming a caregiver. The NFCA stresses four points: believe, protect, reach out, and speak up. “Family caregivers have to be prepared to do all four of these things to be successful,” Halpern says. They need to believe in their abilities as caregivers, protect their own health, reach out to professionals in the medical and legal worlds, and speak up when they need help or have issues with other family members, their community, or the person receiving care. Many agencies offer respite-care services, which give caregivers a break. For a list of one in your neighborhood, visit chtop.org/state-listings.html.
10. What do you need to know about elder law?
More than you can Google, most likely. Like insurance and medical care, elder law is a maze, and good planning with professionals can keep you from getting lost. “The biggest misconception that people have is that an estate-planning attorney is the same thing as an elder-law attorney,” West says. But elder law is a specialized niche, and attorneys and care specialists stay up-to-date on issues and advocacy for people who need acute and chronic care. As with any kind of attorney, costs vary, but NAELA has a checklist of what to ask when seeking the right attorney, plus resources for finding one in your area. Just visit naela.org. Also, Berkowitz adds, don’t discount the value of a referral. Lists and certifications are helpful, but knowing someone who had a good experience with an elder-law attorney can be a major help in making your own decision.
One final point: No two people’s caregiving experiences are the same, but if you are caring for someone you love, you are a caregiver, not just a dutiful spouse or child. That means you need to prepare and learn as much as you can, take breaks, and find rewards and resources. “It’s an additional job,” says Halpern. “And you need to treat it that way.”
Where Will Your Loved One Stay?
A family member’s home, with in-home care
Pros: Comfort and familiarity for your family member; trained professional care.
Cons: Cost. “If you need 24-hour care, it’s more expensive to stay home,” says Diane Smith, geriatric-care manager with The Next Step/ElderAssist. Unless you have long-term health insurance, you’ll pay for this out of pocket. Medicare doesn’t cover in-home care (just in-home visits, when needed), and Medicaid won’t cover nonmedical in-home care. Also, people often benefit from outside social interactions and can find themselves isolated at home.
Average cost: $19 per hour for a home health aide.
A family member’s home, with a family caregiver
Pros: Even more comfort and familiarity for your family member.
Cons: Lost time, as well as wages and benefits, if the family member needs to stop working.
Average cost: $5,500 per year and up, according to a 2007 caregiver study from Evercare and the National Alliance for Caregiving. Those out-of-pocket costs include food, transportation, and medical costs. They do not include wages and benefits lost when a caregiver quits or reduces work.
Retirement community
Pros: The opportunity to live independently with amenities and little home maintenance, often with meals and social activities provided. Some offer the option of staying on the same campus but moving into assisted living, then a nursing home, when needed.
Cons: An initial and substantial investment is required, plus monthly maintenance fees.
Average cost: $2,672 per month.
Assisted living
Pros: A step between the retirement community and the nursing home, this option usually offers meals, medication management, and an on-site or on-call nurse.
Cons: As with retirement communities and nursing homes, prices can be high and quality can vary. There can also be some loss of independence, as some responsibilities are taken over.
Average cost: $2,968 per month.
Nursing home
Pros: Nursing homes offer their residents full medical care, meals, and medication management.
Cons: Significant costs, varying quality of care, and your loved one’s loss of independence.
Average cost: $5,566 per month for a semiprivate room (Note: Medicaid beds are available once someone has “spent down” all their assets).
Note: Average prices for in-home care, retirement communities, assisted living, and nursing homes come from AARP. Prices for living with a family member come from the Evercare Study of Family Caregivers.
Local Resources
Here are just a few local organizations that can offer help:
Mid-East Area Agency on Aging
636-207-1323, mid-eastaaa.org
St. Louis Area Agency on Aging
314-612-5918, stlouis.missouri.org/government/hslaaa.html
Alzheimer’s Association, St. Louis Chapter
314-432-3422, alz.org/stl
Wash. U.’s Memory and Aging Project
314-286-2683, alzheimer.wustl.edu/about_us/maps/index.html
Memory Care Home Solutions
314-645-6247, alzhomesolutions.com
Kristen Hare, formerly an editor with St. Joseph News-Press, contributed to SLM’s “Great Places to Work.”
