When Someone You Love Needs Nursing Home,
Assisted Living, or In-Home Care:
The Complete Guide
by Robert F. Bornstein, PhD, and Mary A. Languirand, PhD
An excerpt from the first edition of the book:
James breathed a sigh of relief when the phone call came. It had been a dogfight, but finally—finally—he had obtained funding for his wife to have in-home care three days each week. Since her stroke, Beatrice had been unable to look after herself, and while James did the best he could, he simply wasn’t able to manage a full-time job along with caring for his wife.
When the home-care worker, Kathleen, arrived the first day, everything seemed fine. She showed up on time and seemed to know what she was doing. She’d worked with stroke patients before, she explained, and the worst thing the spouse could do was interfere. Let her do her job, she said, and after half an hour, she shooed James out the door. Not to worry, Kathleen assured him, Beatrice is in good hands.
After lunch that day, James called to see how things were going. There was no answer. He tried again, thinking he must have dialed the wrong number. Again, no answer. He waited and tried again ten minutes later. This time Kathleen picked up the phone. She’d been busy, she explained, helping Beatrice get dressed. But all was well, not to worry, Beatrice was fine.
Things went smoothly for the first couple of weeks. Sure, Beatrice complained about Kathleen—said she was snippy sometimes, and didn’t always come when called. James became uncomfortable as he heard his wife’s complaints. On the other hand, Beatrice could be demanding at the best of times, even when she was feeling good. And nowadays she complained about everyone and everything: doctors, nurses, noisy neighbors, garbage trucks, kids playing in the street. James figured Beatrice was just angry at being housebound and frustrated by the problems that resulted from her stroke.
Things got busy at work, and James was more grateful than ever for Kathleen’s presence. Beatrice continued to complain, but for the most part, things seemed all right. James called on occasion, and usually someone answered. When they didn’t, he called again, and eventually they picked up. If he could just get through the busy season, he’d have more time to spend with his wife. Just a few more weeks, and work would quiet down.
Ten days later the phone rang at work. James picked it up, and heard Kathleen’s panicked voice. Beatrice had passed out. She fell in the bedroom and Kathleen couldn’t lift her. The ambulance had just left and was on its way to the hospital.
When James arrived he got the news: Beatrice had suffered another stroke. It was much worse this time, and they didn’t know if she’d pull through. James waited and worried. He felt terribly guilty that he hadn’t been there. Maybe if he hadn’t been so selfish, this wouldn’t have happened.
In the end Beatrice did pull through, but the second stroke was a bad one, and Beatrice could no longer walk. She had trouble sitting upright now and couldn’t chew or swallow. In-home care was no longer an option, and Beatrice was moved to a long-term care facility—a nursing home.
It took a lot of digging, but eventually James found out what happened. Kathleen, it turned out, had been watching TV, and she failed to hear Beatrice’s cries through the closed bedroom door. Kathleen had forgotten to administer Beatrice’s noon medication, and this time the consequences were disastrous: rising blood pressure, a burst artery, another stroke. Beatrice spent the rest of her life in the nursing home. She never came home again.
How could this have happened? Was James at fault? Is there anything he might have done differently that would have led to a more positive outcome?
Although James was well-intentioned, he made four mistakes that allowed a difficult situation to escalate into a crisis:
He ignored key warning signs of a poor home-care worker.
He didn’t take his wife’s complaints seriously enough.
He didn’t trust his instincts.
He allowed work-related stress to cloud his thinking.
In this article, we explore the key elements of in-home care: finding and funding it, evaluating its quality, and dealing with problems that arise during the home care process.
Finding and Funding Good In-Home Care
There are many different types of home care services, and they vary according to the care-receiver’s needs. The more complex the problem, the more highly trained the caregiver must be and the higher the cost. In 2000, the average cost per visit for a home care nurse was more than $100; the average cost per visit for a home health aide was nearly $60.
To be covered by Medicare, a service must be ordered by the patient’s physician, who declares the service medically necessary. A wide range of in-home services can fall into this category, including:
Skilled nursing care
Speech, physical, and occupational therapy
Dietary and nutritional consultations
Some educational services (for example, diabetes self-care)
Rental or purchase of medical equipment (such as a wheelchair or blood-glucose monitor)
Keep two things in mind as you work out your plan for funding in-home care. First, in most cases Medicare will pay for in-home services only if the person has already been treated for the condition in a hospital or skilled nursing facility. Second, regardless of the severity of the problem, Medicare generally will not pay for custodial care (basic personal care such as bathing, feeding, toileting, and dressing).
How can you fund services not covered by Medicare? For many people, the best option may be a long-term-care insurance policy. Unlike Medicare, most long-term-care policies cover some custodial or nonskilled services (such as light housekeeping and transportation). Eligibility criteria (which often include waiting periods and dollar amount exclusions) differ from policy to policy; you should check with your insurer for details before you contract for services or file for benefits.
Who May Provide In-Home Care?
In-home care is typically provided by certified home health care agencies and certified independent in-home caregivers, also known as independent providers.
Certified home health care agencies: A certified home health care agency is a corporation that provides a range of in-home health care services. To become certified, the agency must meet stringent federal and state standards in a variety of areas. The agency must also show that it adheres to all federal and state laws related to caregiving, patients’ rights, storage and handling of medical information, and use of public and private funds.
Certified agencies must make their customer satisfaction data (ratings by past care recipients and their families) available to anyone who requests it. Don’t be shy about asking for this information: Reputable agencies are usually happy to share it with you. In fact, if you ever encounter resistance when you request information in this area, consider it a warning sign. The agency may well be hiding something and should probably be avoided.
Certified home health care agencies can be found through many sources. These include:
The patient’s physician (who is probably familiar with most of the local options)
The local Medicare office (which can tell you if an agency is eligible to provide a covered service)
The office of the patient’s private insurer
The local chapter of the Visiting Nurses Association of America (its nationwide office number is 800-426-2547)
Area hospitals, nursing centers, and social service agencies
The National Association for Home Care (202-547-7424 or www.nahc.org)
Be forewarned: A certified home health care agency can be a rather formal operation, with a fair amount of red tape. Forms must be filled out, documentation provided, and so forth. These things may seem like hurdles, but they are really intended as safeguards. For example, when you provide an agency with your loved one’s secondary insurance numbers, the agency can determine exactly what services she’s entitled to receive. Oftentimes, the agency’s groundwork will enable the patient to get access to benefits you didn’t know existed—and better care as a result.
Another advantage of working with an agency is that in the long run, the agency can reduce your paperwork burden considerably. They do the billing and recordkeeping for you, and since they deal with these matters every day, they get pretty good at fighting through insurance and government roadblocks that would leave most of us tearing our hair out.
Independent providers: Not all good caregivers choose to work for agencies. Many prefer to offer their services privately, deciding for whom they will work on a case-by-case basis. Independent providers of home health care can usually be located through Medicare, other third party payors (insurance companies), or the Yellow Pages. (Look under “Home Health Services” and “Nurses.”)
Like home health care agencies, independent providers are required to meet certain criteria in order to be licensed. They must have adequate training and appropriate experience. They must also have malpractice insurance, adhere to the ethical standards of their profession, and fulfill continuing education requirements to stay up-to-date on the latest findings and treatments.
The independent provider is required to do all these things, but do they? Usually, but not always. If you use an independent provider, be prepared to investigate their background and credentials thoroughly. Most independent providers are legitimate, but as in every profession, there are some charlatans out there. Be wary, and investigate a potential home care provider thoroughly before you contract for services.
Remember, too, that no matter how skilled or devoted an independent provider may be, he or she is still only one person. You can expect that at some point your independent provider will call in sick or need a personal day to take care of a family emergency. Needless to say, if Mom needs help getting to the bathroom, she won’t be able to put her needs on hold until the caregiver returns on Thursday.
The bottom line: If you use an independent provider, you’ll eventually need to arrange backup coverage. Many independent providers make their own backup arrangements, but don’t assume this without asking. Raise the issue ahead of time, and make arrangements in advance.
How to Evaluate an Agency or Provider
Once you find an agency or independent provider, how do you assess the quality of their services? First, meet with them personally. There’s nothing like a face-to-face interaction to help you judge a potential caregiver. Second, review their references and credentials. Everything should be in order here—no exceptions, no excuses. Third, ask others about the provider’s performance. Past clients are a great source of input. Finally, trust your instincts. If something feels wrong, it probably is.
Here’s a quick summary of the topics you should cover in your evaluation:
Questions to ask the agency:
How long have you been in the area?
Which doctors and hospitals do you work with most closely?
Have you ever received service awards from federal and state overview boards?
Have you ever been censured by a federal or state board?
What are your customer satisfaction ratings?
How do you recruit and reward good staff?
Can you guarantee full staff coverage? How?
What are your procedures for addressing complaints or problems?
Questions to ask the independent provider:
Were you trained at accredited institutions?
Are you certified and/or licensed in your profession?
To what professional groups or organizations do you belong?
How long have you been doing this kind of work?
Have you ever been accused or convicted of malpractice?
Have you ever been censured?
Have you received any awards or commendations for your work?
Do you have experts to whom you can turn on short notice, should an emergency arise?
Questions to ask former clients and their families
How reliable was the provider?
How well did the provider communicate with you and the patient?
Did you have any problems with the provider? What were they?
Would you use this provider’s services again?
How well did the provider perform in an emergency?
Caregiver qualities you’ll have to assess yourself:
Questions are important, but not all information can be obtained just by asking. To evaluate a potential caregiver, you’ll need to judge a few things for yourself. Any good caregiver—whether she is an independent provider or employed by an agency—should have five qualities:
A professional appearance. Appearance provides clues about a person’s attitude and professionalism. Although most caregivers don’t look like television nurses, a sloppy or unkempt appearance simply isn’t acceptable. A professional caregiver should be clean and well-groomed, and dressed appropriately for the job. Try to not be put off by generational norms. (Blue hair or a pierced nose don’t mean a person is a bad caregiver.) And don’t be fooled by size: Some overweight people move quickly and smoothly, and some smaller people are surprisingly strong, especially if they’re well-trained and use the proper equipment.
Good observational skills. Good caregivers are observant. They must be sensitive to changes in the patient’s condition—especially those the patient can’t describe directly. Observational skills are hard to evaluate in a brief interview, but having the caregiver interact with the care receiver can be helpful in this regard. Together, you and your loved one can judge whether the caregiver seems to have a “feel” for the situation and the skills needed to identify changes in the patient’s physical and emotional states.
Good communication skills. A caregiver must be able to communicate clearly with folks who have perceptual problems. Ironically, good communication skills can sometimes make a caregiver seem a bit odd on first meeting. After all, caregivers are accustomed to working with those who are hard of hearing, so they may speak slowly, loudly, and very directly. In normal conversation, we generally don’t ask people if they need to use the bathroom, but for a caregiver, this is a pretty standard question, and one much appreciated by someone who can’t verbalize their needs.
Quiet self-confidence. Arrogance isn’t helpful, but quiet self-confidence is essential in a caregiver. After all, part of the caregiver’s job is to provide reassurance to you and your loved one. A good caregiver helps both patient and family member feel that everything is in good hands.
An open mind. Caregivers and care recipients are often quite different—in age, gender, and perhaps religious or ethnic background as well. A good caregiver must be open-minded and tolerant of ideas and beliefs that might not be the same as hers. Care receivers often vent their frustration on those around them, blurting out insults when depressed or upset. An experienced caregiver expects this and won’t take it personally.
A sense of humor. Professional caregivers know to expect the unexpected. Their clients are often stressed and cranky. Food gets spilled. Bedclothes get soiled. An even temperament and a dose of good humor are essential in a caregiver whose work is sometimes unpleasant.
The Trial Period
Once you’ve judged a caregiver to be acceptable, it’s a good idea to begin with a one- or two-week trial period. Partway through the trial period, ask the care receiver how she feels about the caregiver. Ask her to evaluate the caregiver in specific, concrete areas—quickness of response, patience, gentleness, professional manner, and so forth. It’s important that the care receiver feel comfortable with the caregiver, but competence is the essential ingredient here. A pleasant but incompetent caregiver can do more harm than good.
Agencies usually offer more flexibility than individual caregivers when it comes to caregiver-patient fit. Good agencies know that not everyone can work well together and that the first match-up might not be the one that sticks. Most agencies will allow the patient to work with several different caregivers in trial runs, if need be. Working with an agency doesn’t ensure that you’ll get your first choice of caregiver, but you should be able to specify your preferences, and the agency should make a reasonable effort to match you with someone you like.
Here we see another advantage of an agency over an independent provider. If you reject an agency caregiver, she’ll probably get another posting right away—no hard feelings. On the other hand, if you reject an independent provider who happens to worship where you worship, or shop where you shop, you might have to deal with a rather awkward situation for a while.
When Problems Arise During In-Home Care
The majority of caregivers are good and compassionate people, devoted to their patients’ well-being. Some, however, are not.
Important warning signs of a poor home-care worker: At the start of this article, we described the problems experienced by James and his wife Beatrice as a result of a poor home-care worker. No matter how carefully you evaluate things ahead of time, it is impossible to predict with 100 percent accuracy how someone will perform in the future. Here are some important warning signs of a poor home-care worker:
Unanswered phone calls or a constant busy signal
Television or radio remaining on throughout the day
Late arrivals, early departures, last-minute cancellations
Health care equipment (needles, swabs, etc.) in the trash, instead of properly disposed
Significant decline in the cleanliness of the home
Evidence of illegal drugs in the home (for example, lingering odor of marijuana)
Signs that the caregiver has been drinking alcohol while on the job or before arriving for work (for example, alcohol on the caregiver’s breath)
Presence of other people in the home (for example, unexplained visitors, the home-care worker’s children)
Frequent complaints on the part of the care receiver
A troubling change in the care receiver’s behavior (for example, increased depression, agitation, or confusion)
Reports from neighbors that something is awry
Any sign—no matter how “minor”—that abuse, neglect, or exploitation has taken place (these signs are described in detail below)
Confronting a poor caregiver: It is important that you confront a caregiver when you suspect something’s wrong, but the way you confront the caregiver is critical. Be tactful but firm. Try not to sound accusatory or blaming, but express your concerns clearly and directly. Ask specific questions about the care receiver’s concerns, as well as your own. Don’t mince words. Ask questions until you’re completely satisfied with the answers. If something needs to be changed, continue the discussion until you’ve developed a mutually agreed-upon plan of action. Set a follow-up meeting to assess how well the changes are working. And if, after you’ve pressed the issue, you conclude that something is wrong and it can’t be fixed, do three things:
Document the problem—take detailed notes describing the problem, photographs if necessary.
Terminate the service, and begin the process of obtaining replacement service.
Report your suspicions to the home health care agency if the caregiver is an agency employee, or the appropriate state licensure/certification board if the caregiver is an independent provider.
Signs of Abuse, Neglect, or Exploitation
Poor caregiving is bad enough, but the following signs and symptoms may indicate that abuse, neglect, or exploitation of the care receiver has taken place—a very serious situation. These signs must always be taken seriously. Never, ever ignore:
Bruises, fractures, burns, or “impossible” injuries (for example, a dislocated elbow in a bedfast patient)
Evidence of dehydration or malnutrition
Exposure injuries (for example, hypothermia)
Signs of improper medication
Hypervigilance (“hyper-alertness”) on the part of the care receiver
Undue concern with “what [the caregiver] wants”
Development of new phobias and fears
Persistent signs of upset prior to caregiver arrival (for example, pleading with you not to leave)
Unexplained withdrawals from checking or savings accounts
Appearance or disappearance of valuable items
Evidence that unnecessary services have been ordered
Changes in the care receiver’s legal or financial status
Unusual contributions to charities
Reporting Abuse, Neglect, or Exploitation
You have a moral obligation to report abuse, neglect, or exploitation if you observe it in a caregiver. Not only will you be protecting your loved one, but you’ll be protecting other, future care receivers who might otherwise be harmed.
If you detect any of the signs listed earlier, don’t delay. Take the three steps outlined in the previous section (document the problem, terminate the service, and report your suspicions to the appropriate authority). In addition, add a fourth step: Report your concerns to the local Elder Abuse program. Their telephone number should be listed in the “Human Services” section of the phone book, usually near the child and spouse abuse hotlines. You can find the telephone number of your state’s Elder Abuse program through the Elderweb’s Online Eldercare Sourcebook (www.elderweb.com). If you don’t have Internet access, you can obtain contact information for reporting suspected abuse by calling 800-677-1116.
Who Funds In-Home Care?
Costs for four-day-a-week in-home care averaged around $14,000 per year in 2000, and a sizeable portion of these costs must be paid out of pocket. The good news is, if you hire a home care worker to care for an aging parent while you work, you may be able to obtain tax credits for up to 30 percent of the cost of the service. For up-to-date information on the latest regulations in this area, contact the Internal Revenue Service by phone at 800-829-1040 or online at www.irs.ustreas.gov.
Checking Up On An Agency
Here are two good sources of information on a home health agency’s accreditation status (including any past violations or pending investigations):
Joint Commission on Accreditation of Healthcare Organizations
One Renaissance Boulevard
Oak Brook Terrace, IL 60181
National Association for Home Care
228 7th Street SE
Washington, DC 20003
Should You Ever Use an Agency That is Not Certified?
Because the process is lengthy and expensive, not all agencies are certified. A fledgling home care agency might not yet have the equipment needed to meet federal and state guidelines, but in some cases they can still offer reliable, professional service. Agencies that are not certified usually offer their services at lower cost, since they don’t have to pay the more highly-trained staff required by certification guidelines.
If all your loved one needs is a dependable, pleasant companion to provide supervision and some light housekeeping, an uncertified home care agency might be an appropriate option. However, remember that an uncertified agency isn’t operating under the watchful eye of federal and state reviewers, and they need not screen or monitor staff as carefully as a certified agency does. If you use an uncertified home care agency, be especially vigilant for signs of poor care.
Family Member as Caregiver (and Paid for It!)
There’s an interesting “loophole” in many long-term care insurance policies: Although most policies require that custodial and nonskilled care be provided by persons who have completed formal training, some policies will actually pay for family members to get this training, and then reimburse them for the services they render. In other words, it may be possible for you to get paid for providing care to a family member, as long as your policy covers this and you meet the policy’s eligibility criteria. The advantage for the insurance company is that they save money (since you’ll be reimbursed at a lower rate than a more highly-trained provider). The advantage for you is that you’ll know your loved one is getting top-notch care (since you’ll be the one providing it).
The Geriatric Care Manager
In recent years, a new eldercare specialist has arrived on the scene—the Geriatric Care Manager (sometimes called a Case Manager). Geriatric Care Managers are usually nurses or social workers with training and experience in eldercare. They can help arrange home health care, nursing home placement, and a variety of other services. Geriatric Care Managers also coordinate different aspects of care, monitor progress, and oversee transfers among different care settings. Because they are usually well-connected within the area, Geriatric Care Managers can cut through a lot of red tape in a relatively short time. For the long-distance caregiver with a faraway loved one, the Geriatric Care Manager is especially helpful.
Geriatric Care Managers usually charge a flat fee of $250 or more for the initial assessment, and an hourly fee ranging from $25 to $100 for additional work. These fees are rarely covered by Medicare or private insurance, and it’s a good idea to put fee arrangements in writing before you begin. Sometimes a local senior center will offer free or subsidized access to a Geriatric Care Manager on a short-term, time-limited basis.
You can locate Geriatric Care Managers through local senior centers and nursing homes. The National Association of Professional Geriatric Care Managers and the National Association of Social Workers also offer referrals and recommendations. They can be contacted as follows:
The National Association of Professional Geriatric Care Managers
1604 North Country Club Road
Tucson, AZ 85716
The National Academy of Social Workers
750 First Street NE, Suite 700
Washington, DC 20002
202-408-8600 or 800-638-8799 www.naswdc.org
Hiring an in-home caregiver is not your only option. If your loved one does not need skilled nursing care, but you’re still having trouble coping on your own, consider respite care, which can take several forms:
Informal caregiving arrangements. If all that’s needed is a pleasant companion who can do some light housekeeping, an informal caregiving arrangement with a trusted friend or neighbor may be appropriate. If you choose this option, take some precautions up front. Be sure both parties are clear on the caregiving expectations and financial arrangements. Put everything in writing. Leave a clear list of instructions (including medication and emergency contact information). And be prepared to terminate the arrangement if things don’t work out (an awkward situation, but necessary if you’re not satisfied with the service).
Temporary in-home care. Home health care agencies and independent providers are often willing to provide in-home care on a time-limited, “as needed” basis. You can arrange for someone to provide care for a few hours, a day or two—whatever you need. This type of service is not covered by Medicare or most private insurance policies, but sometimes volunteers from local agencies and support groups will provide free short-term respite care. Contact your local Agency on Aging for a list of volunteer providers.
Overnighter options. Many nursing homes, hospitals, and mental health centers offer overnight or weekend “getaway” programs for seniors in need of limited nursing care. Once the patient is deemed eligible by a physician, he or she can schedule a night or weekend “sleepover.” Sleepovers enable caregivers to attend after-hours work-related events and can be used to provide the caregiver with some “time off” from caregiving. Limited emergency coverage is available in most overnighter programs.
When the Abuser is a Family Member
Sadly, most instances of physical, emotional, and sexual abuse are not perpetrated by strangers, but by family members. Abuse cuts across all financial, religious, and ethnic boundaries—don’t assume your family is immune. Some people are deliberately hurtful, of course, and there are more than a few con artists out there just itching to take a trusting person’s money. But most of the time, abusers are simply well-intentioned caregivers—people just like us—who were stressed beyond their limits and momentarily lost control.
If, in the course of caregiving, you find yourself yelling, threatening, handling your loved one roughly, or deliberately ignoring requests for assistance, get help immediately. Call a crisis intervention hotline, or contact a caregiver support group. It will be hard to admit what happened, but there’s no shame in succumbing to stress. The shame is in not facing up to the problem and not doing something about it.
If you suspect that a friend or family member is abusing someone in their care, confront them calmly but directly, and insist they get help. Do not permit them to provide care until the problem has been addressed. Remember: If you don’t act to stop abuse, you are a party to the abuse—as guilty as the person doing it. Failing to report abuse may even make you legally liable for future incidents, just as if you had committed them yourself.