Beth Johnson's decision to move her mother, Frieda, into a nursing home was agonizing.
Frieda had suffered a series of small strokes, and Johnson worried that her mother was too frail to live alone. But after moving into Johnson's Southfield, Michigan, home, Frieda's health problems multiplied. She suffered a series of falls, often calling for her daughter in the middle of the night. Then Frieda fell and broke her shoulder, and her health went downhill after that. Finally, a little more than a year later, Frieda fell again, this time bruising her face badly.
"At that moment, I made the gut-wrenching decision to find a nursing home for my mother," says Johnson, 44. "I had fought so hard, done everything I could, but I knew it was time. In a strange way, I was even relieved. I felt alone for so long."
Perhaps the hardest decision a family member can make is to send a loved one to a nursing home. For many caregivers, it feels like giving up and abandoning them, and the guilt is tremendous. In many cases, however, a nursing home is the best -- and sometimes the only -- option for a person with a serious condition who needs care 24 hours a day. Sometimes you can find aides to come to your own home 24/7, but if you are unable to pay for that and are unable to arrange other care, a nursing home may be the only option.
Many families feel guilty or torn about sending their loved one into a nursing home. But when a senior's health deteriorates to the point that nursing care is necessary, even crucial, delaying the move can be a mistake.
Getting an early start -- even months before your loved one needs to be in a nursing home -- can help you find the best possible home for your relative. You can the spend that time filling out applications, researching how to pay for care, and getting on the facilities' waiting lists.
Robert N. Bua, an attorney and author of The Inside Guide to America's Nursing Homes, advises family members to look first where you or your loved one lives. Although telephone books are a good place to start your search for nursing homes, you'll amass a better list by seeking referrals from your family, friends, neighbors, co-workers, and churches. Hospitals usually have continuing care or discharge departments that help individuals and families find nursing care once they leave the facility. Even a personal physician may have a referral to contribute. Ask around.
Look for a good track record
Reports of malnutrition and abuse are only a few reasons why many families shun the idea of sending a loved one into a nursing home. Federal and state reports show you have a right to be wary. So before committing to a particular home, check inspection reports and surveys conducted by state and federal nursing home regulators. It's possible to find a good home for your loved one, but you should also be aware if the place has a checkered past. You can find information about inspection reports, staffing, and quality of care for any Medicare and Medicaid certified nursing home at http://www.medicare.gov/NHCompare/home.asp.
Reputable homes will also show you a list of citations if you visit. Ask the administrator if you can look at the logs. But if the home isn't forthcoming or delays responding to your request, don't end your investigation there. Call your state agency and ombudsman to see if you can look at nursing homes' records at the local district office. These records are available to the public during the agencies' working hours. They include reports of violations, as well as the home's responses to negative surveys and complaints. While you may consider some violations minor, some can be very serious. Keep looking until you find a place you like.
While you are at it, take a look at Consumer's Union Nursing Home Watch list, which includes approximately 10 percent of nursing homes in each state whose inspection reports raise questions about the quality of care delivered to residents. You can find the list at http://www.consumerreports.org/cro/consumer-protection/shopping-for-a-nursing-home-505/nursing-home-watch-list/guide-to-the-list.htm
Consumers Union recommends that you ask for the state survey report that is required to be posted in every facility. Some nursing homes don't post the report or make it readily available, so you may have to demand to see a copy. See what deficiencies the facility has been cited for and what that might mean for your relative. CU also recommends that you visit the facility often, help make a written plan for your loved one's care, and join the family council involved in the nursing home.
Also look for a home that is accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), an independent agency that evaluates nursing homes, hospitals, and other long-term care centers. To be accredited by JCAHO, health care centers, including skilled nursing facilities, have to be surveyed by the commission every three years. Only about 5 to 10 percent have JCAHO accreditation, and not all good homes are JCAHO-accredited. But having that accreditation is an indication that the facility is going the extra mile for quality. You can also file complaints about nursing facilities directly to JCAHO.
The cost of a nursing home can be devastating to a family, so check out Medicare and Medicaid applications in your state. Medicare often pays for the first 20 days at a skilled nursing home after you've been in a hospital, but longer stays have to be paid for partly by the residents or their families.
Medicare doesn't cover most nursing home stays if they involve long-term care, so you will need to find other financing if your loved one's care is expected to last years. State-funded Medicaid programs pay for long-term custodial care, but only if you can prove the bills have already depleted most of your income. (That's why some low-income and middle-income seniors transfer their assets to other relatives before seeking care; an elderlaw attorney can tell you more about this.)
Seniors and their families often depend on long-term care insurance to pay for the costs of a nursing home. Pay attention to the kind of coverage you are eligible for, and how long the eligibility period is: You may have to pay more for coverage that begins soon after Medicare stops. But getting long-term insurance that minimizes your out-of-pocket expenses, say experts, is preferable to those that require you to pay for your care for the first three to six months. If your loved one has Alzheimer's or Parkinson's disease, for example, policies should include coverage for dementia. You may also want to include options that cover alternatives to nursing homes, such as assisted living or care at home.
Once you do decide to visit, make a list of homes to visit (at least two to five, Bua advises) and a list of questions to bring along. When you do visit, pick up applications while you're there, or ask for a "universal" application that's accepted by most nursing homes. That will cut down on paperwork, and will ensure you have backup facilities in case your first choice has no available beds.
If your loved one has a preference for a home that's sensitive to a specific religious, cultural, or food preference, you may have to narrow your search and ask whether the home can accommodate such needs or arrange visits from chaplains or rabbis.
Then prepare to visit often, says Robert Scrivano, an independent senior-care planning consultant based in Sacramento, California. He advises families to visit a home at least five or six times before deciding, paying special attention to staffing and the way they treat patients. After your loved one has been admitted, you should visit at least twice a week. When you're there, pay particular attention to how many people are around to care for your loved one, and if they remember to call him or her by name. Scrivano says that listening and observing for at least 10 minutes each time you visit will tell you how well a nursing home takes care of its residents.
"I have not found any shortcuts to sticking your nose in," Scrivano says, adding that reputable nursing homes don't restrict visiting hours. Visit cafeterias, residents' rooms, and recreation areas, he says, and make sure you visit late at night. "Do they warehouse people in the hallway? Does the staff appear to be active? You have to go at different times of the day. You have to go announced and unannounced."
Check to see if residents are well fed and groomed, and if bed linens are changed regularly. If there is a lingering smell of urine, rotting food or unchanged linens, you should visit again to see if it's just a one-time problem or a sign that cleanups aren't regularly scheduled. If you have time, linger and see how long it takes for staff to check in on patients, Scrivano says. Family members should not be shy about asking pointed questions about the ownership of the nursing home. It can indicate whether an operation is unstable and unreliable.
Other warning signs to watch out for
Check the patient-to-staff ratio as well. Some homes have too few nursing assistants for too many patients, especially at night. A recent report from the National Citizens' Coalition for Nursing Home Reform, an advocacy group, said that some nursing assistants are responsible for as many as 15 residents to care for at a time. Ideally, there should be at least one staff person for every six to eight residents. You may also want to know whether the home staffs its facility mostly with nurses who have a higher degree of health care training, such as registered nurses, or those with very little, such as certified nursing assistants.
Finally, pay attention to safety precautions and guidelines. Bathrooms should have handrails and call buttons near toilets and showers. There should be some privacy for residents, fences to prevent wandering and areas where you can meet privately with your loved one. Other experts suggest asking about medical services, such as physicians who are available for emergencies, as well as pharmacists, dentists, podiatrists, and other specialists.
Be on the lookout for evidence that the staff encourages residents to be dependent on them for care and other simple tasks. It prevents residents from getting better. It is much faster and more efficient for the staff to dress the residents rather than let them slowly do it themselves. It's easier to arrange for each resident to have a wheelchair so the trip to the dining room is faster than letting an elderly person walk there slowly. Most facilities issue the chairs with each new resident in order to save on labor costs for transportation (and the residents and families like it, too). But when left in wheelchairs, frail seniors eventually are unable walk any more. This may take only a month, and after that you often see residents spending the entire day sitting in wheelchairs. Some homes do not allow residents to have a wheelchair unless it's for special circumstances.
Check on the programs the home plans for its residents. Many homes work with outside community groups to link them with pets, children, and volunteers who will read to residents. Some homes have programs tailored to a resident's particular interests and needs. If a home has no such programs or connections, look elsewhere.
Making the transition
Once you get a nursing home contract, the AARP advises residents to make sure it includes information about basic services included in the daily rate, itemizes the lists of charges for services not included in the rate, and describes how decisions are made to move the resident to a different room.
Be wary of contracts that limit the home's liability if the resident is injured or has his or her property stolen. Residents shouldn't be required to deposit all their income to the facility, or be required to pay up-front money when they are eligible for Medicaid, according to AARP. Reputable nursing homes also don't require residents to consent to medical procedures or to have a living will or health-care power of attorney in advance. Finally, you should determine what plans the home has for holding a bed if someone has to be hospitalized temporarily.
Experts say frequent visits -- daily if possible and at least two to three times a week -- are probably the best way to make sure your loved one is doing well. That way, your loved one will know he or she isn't forgotten and can ease into the home more comfortably. In addition, the staff will know that you'll check to see if special medication instructions are followed, and that patients aren't left in dirty linens or moved so little that they develop bed sores. Mealtimes, weekdays, and evenings are best for unannounced visits.
This may be tough to do if you live thousands of miles away. Calling every week or few days is another way to let the staff know you're vigilant and interested, even if you're not there physically; having a relative check in on them personally is also a good idea. That way the staff knows someone is interested in their loved one's welfare and may be more likely to drop in unannounced. Call during different shifts to orient yourself with different staff members. When your loved one is ill, frequent and long visits or phone calls are critically important to the staff as well as to the doctor.
In a few rare cases, some nursing homes have installed a security camera -- a so-called "granny cam" -- into a loved one's room. Federal law doesn't forbid the use of cameras, nor does it necessarily allow them, and there are no studies that show that having a camera around will improve care. But if you really want a camera around, and the home allows it, you can introduce the idea by letting nursing home officials know that you simply want to keep tabs on your relative and make sure she is doing well.
"A new beginning"
Although initially the adjustment for Beth Johnson's mother was difficult, she has settled comfortably into the home and enjoys playing bingo and going to concerts. Johnson's life has also improved since her mother moved out. After her initial guilt, she's realized that her mother is socializing and has become part of the culture at the home.
"This is a new beginning for my mom and me," Johnson says. "It's a chance to be together where I'm not stressed from taking care of her all the time. So many children go through agony just to keep their parents out of a nursing home. For both of us, everything is much better."
Long-term care ombudsmen, who act as advocates for nursing home residents and as mediators for disputes between nursing homes and residents or relatives.
Beat the Nursing Home Trap, by Joseph L. Matthews, Nolo Press
Your Medicare Handbook Health Care Financing Administration, free guidelines on Medicare. Call 800/MEDICARE to order.
A Shopper's Guide to Long-Term Care Insurance, from the National Association of Insurance Commissioners
GAO report on nursing homes, 1999 Federal Document Clearing House, "What to Look for When Choosing a Care Facility for an Elderly Person," California Registry, Senior Housing Locator
GAO report on nursing homes, "Despite Increased Oversight, Challenges Remain in Ensuring High-Quality Care and Resident Safety," http://www.gao.gov/new.items/d06117.pdf
"Nursing Home Admission Contracts," AARP
"Guide to Choosing a Nursing Home," Health Care Financing Administration, U.S. Department of Health and Human Services
"Choosing a Good Nursing Home," AARP
Interviews with Robert Scrivano, long-term care consultant, Sacramento, California; Sarah Greene Burger, National Citizens' Coalition for Nursing Home Reform; and Beth Johnson, caregiver of ailing parent, Southfield, Michigan