Nursing-Home Issues

For the vast majority of Alzheimer's caregivers, there comes a time when they can no longer care for the affected individual. They simply do not have the skill, energy, and support to provide round-the-clock supervision and daily activities tailored to the person's increasing needs and remaining abilities. That's the time to take the final step in Alzheimer's care &nbsp-- moving the person into a nursing home.



This is often a wrenching decision.



It's natural to feel that no one can take care of your loved one as well as you can because no one feels the way you do about the person. It's true that no one loves the affected individual as you do, but a good nursing home, particularly one that specializes in people with dementia, can provide better care.



It's natural to feel guilty about "abandoning" your loved one. "She raised me, and now it's my turn to care for her." You're not abandoning the person. Chances are you've sacrificed plenty caring for the person. Chances are that you're at your wits' end, and know deep down that a nursing home would be best.



It's natural to feel depressed about moving a loved one to a nursing home. Alzheimer's is a very depressing illness, especially as it progresses from moderate to severe. A good nursing home is better equipped to handle people with severe dementia than even the most dedicated, saintly loved one.



It's also natural to feel apprehensive about moving a loved one to a nursing home. News stories about abuses at nursing homes&nbsp-- particularly, excessive use of drugs and physical restraints&nbsp-- have tarnished the industry's reputation. But with time, and the right information, you can find a good one. After a while, your loved one will adjust. And so will you. Read on:


  • When to start planning: at diagnosis

  • How to find a good nursing home

  • How to evaluate a nursing home

  • Moving your loved one

  • Visiting and adjustment issues

  • Paying for nursing-home care


When to start planning: at diagnosis


When a loved one is diagnosed with Alzheimer's disease, finding a nursing home is probably not high on the list of things you and the affected person first think about. There's so much else to deal with. But the sooner you begin planning for nursing-home care, the better you and your loved one are in the long run.



Barring some medical miracle, Alzheimer's disease follows a relentlessly downward course. Some day&nbsp-- hopefully not soon, but some day&nbsp-- you will probably have to move your loved one into a nursing home. Don't deny this possibility. Face it squarely. Nursing-home residence is not inevitable, but it is likely. Both you and the affected individual should start getting used to the idea early on. Talk about your feelings. Talk with other family members, your clergy, and people who have already placed loved ones in nursing homes. If the affected individual is amenable, visit some facilities together.



There are probably quite a few nursing homes near you. Some are, no doubt, better than others. Top-rated nursing homes usually have waiting lists. In addition, there is a shortage of nursing homes that specialize in people with Alzheimer's disease. The earlier you begin exploring nursing homes, the earlier you're likely to find one whose program, location, and price meet the affected individual's needs and your needs. Get on the waiting list early. That increases the likelihood that a bed will be available when your loved one needs one.



Planning early for nursing home care also saves you the trauma of having to make a hasty decision in a crisis situation. The transition into a nursing home is never easy, but the more reconciled you are to it, the better it is for your loved one. People with Alzheimer's are easy to upset and agitate. The more upset you are, the more upset the affected individual is likely to be.



Finally, planning early is the wisest course financially. It allows other family members to discuss their own budgets and come to a consensus about supporting the affected individual. It also allows time to arrange the affected person's financial affairs to maximize eligibility for government assistance.



How to find a good nursing home


Nursing homes include a variety of possible living arrangements. Traditionally, nursing homes cared only for those who could no longer care for themselves and whose families could no longer provide adequate care. Today, the trend is toward "life care" or "stepped-care" facilities. These complexes typically offer three levels of care: independent apartments for people who can still take good care for themselves; assisted-living facilities for those who need help with meals, laundry, medications, and such; and a nursing home for those who need greater supervision and care. Once people live in the facility, they move to increasing levels of care as they need to.



To find out what types of nursing facilities are available in your area, talk to friends, social workers, clergy, local senior citizens organizations, and the Alzheimer's Association. Once you meet people in your area who are knowledgeable about and experienced with local nursing homes, a helpful information network will open up to you.



If the person is an armed forces veteran, contact the Veterans Administration. A VA hospital might be available to your loved one.



Organizations and their publications may also help:

  • The Alzheimer's Association has a number of resources related to nursing homes. Ask your local chapter for the booklet "Selecting a Nursing Home with a Dedicated Dementia Unit." Contact your local affiliate.




  • The American Association of Homes and Services for the Aging. The organization that provides information about&nbsp-- and lobbies for&nbsp-- the nation's nonprofit nursing homes. 901 E St., N.W., Suite 500, Washington, DC 20004-2037; 202-783-2242; .




  • The American Health Care Association. A similar organization whose members include both for-profit and nonprofit nursing homes. 1201 - L St., N.W., Washington, DC 20005; 202-842-4444.




  • The National Citizens Coalition for Nursing Home Reform. A coalition of organizations united around a commitment to improve nursing home care. 1424 - 16th St. N.W., Suite 202, Washington, DC 20036-2211; 202-332-2275.




Depending on the type of agency they work for, social workers and other community experts may not be able to recommend one nursing home over another. In addition, they personally might not recommend every home on the lists of homes their agencies provide. If professionals are free to state their opinions, listen to them, ask your questions, and then make up your own mind. If they cannot speak freely, find people who can, and then make up your own mind.



Some physicians and social service agencies own or invest in nursing homes. Ask the people you consult if they have any financial ties to specific homes. Such ties can bias recommendations. Talk to as many people as you can.



Once you have a list of possible homes, call and ask some general questions over the phone: Are there openings? Is there a waiting list? Can you get a brochure or information packet by mail? How much does the facility cost? What types of financial arrangements do they accept?



Telephone interviewing and what you learn by mail may winnow your list somewhat. The next step is to evaluate potential homes yourself.



How to evaluate a nursing home



  • Is it conveniently located? Your loved one may live in a nursing home for several years. If it's too far away, visiting may be a problem. A good facility 10 miles away might be better in the long run than a great facility 105 miles away.




  • Is it licensed and accredited? Check the facility's record with local and state regulatory agencies. A stellar record is great, of course, but a facility that has had a few black marks may still be quite good. Ask if the administration has changed since any problems were discovered. Ask how problems have been dealt with.




  • Forget the lobby decor. A nice lobby with artwork, potted plants, and cut flowers is inviting and reassuring. So are gardens, and wood-paneled administrative offices. But residents don't live in the lobby or garden, or the administrative wing. Focus your attention on the rooms, bathrooms, kitchen, and day rooms.




  • Use your nose. In facilities where many residents are likely to be incontinent, bathroom odors are almost inevitable. However, they should not be overpowering. How does the staff deal with incontinence? Catheters should be a last resort. As you look around, only a few people should have catheter bags attached to their beds or wheelchairs.




  • Check the menu. You know your loved one's tastes. Will they mesh with what the facility serves? If your relative has special dietary needs, can they be accommodated? Is food available only during mealtimes, or is snacking possible?




  • Check the bathrooms. Are they clean? Are they equipped with grab-bars and other aids your loved one needs?




  • Ask if staff members are trained to deal with people who have Alzheimer's. You know the problems your loved one has. Talk with some nurses and ask how they would deal with them.




  • Ask what proportion of residents have Alzheimer's. You don't have to place your loved one in a facility devoted exclusively to Alzheimer's disease, but you want a facility whose staff are experienced in dealing with the condition.




  • Notice the resident-to-staff ratio. The lower the ratio, the better the care (usually). Of course, more staff also mean higher cost. Look for value for your money.




  • Pay attention to how staff members interact with residents. Number of staff members is not the whole story. Do they just sit at the nurse's station? Or are they involved with the residents?




  • Do staff members have questions about your loved one? Staff members who inquire about the person's likes and dislikes, abilities and problems will probably provide better, more individualized care than staff members who treat everyone the same way.




  • Pay attention to how staff members interact with each other. Happy staff members are a good sign of a well-run facility.




  • Who develops the care plan? Federal law requires that nursing homes have individual care plans worked out for each resident. Who develops the plan? Can you participate? As your loved one's Alzheimer's disease progresses, how will the care plan change?




  • Check out the daytime program. Do residents watch TV all day? Or does the facility have organized activities? People with Alzheimer's disease are generally less agitated&nbsp-- and require less medication and physical restraint&nbsp-- in facilities that have rich programs, such as music, exercise, bingo, dancing, or games.




  • Look at the room doors. People with Alzheimer's disease often become hopelessly confused and quite agitated in long corridors with dozens of identical doors. Look for individualized doors with distinctive colors and personal touches.




  • Look for community involvement. Do clergy, students, and outside volunteers visit the facility? People with Alzheimer's disease don't do well in crowds of unfamiliar people, but some variety keeps them interested and helps prevent behavior problems.




  • Ask about visiting policies. When can you visit? Can you have any privacy with the resident? Can you take the resident off the grounds? The more "open" the facility, the better. In facilities that severely restrict visitation, you wonder what goes on when visiting is prohibited.




  • Ask how behavior problems are handled. Has the administration developed written guidelines? If so, do they seem to be followed? Look around and see how many residents are restrained. Sometimes restraint is necessary, but only a small proportion of residents should be restrained. Ask what proportion of residents gets medicated. What are the medication guidelines? Under what conditions might a particularly unruly resident be expelled?




  • Ask about medical and dental care. How are routine medical and dental care handled? Do health professionals visit the facility? Or are residents taken to physicians and dentists? Can they be taken to their own providers?




  • Ask about medical emergencies. Is there a physician on call? Which hospital(s) does the facility use?




  • Ask about end-of-life decisions. If your loved one has a living will and does not wish to be kept alive with heroic, technological measures, will those wishes be respected?




  • Ask about smoke detectors, fire alarms, and the evacuation plan. Facilities should have all three, along with periodic fire drills.




  • Ask about disaster planning. In areas where tornadoes, hurricanes, flooding, or earthquakes might strike, facilities should have contingency plans. If there have been natural disasters recently, investigate how the facility and its residents fared.




  • Get all information about fees in writing. What is included in the base fee? Are there any "extras"? Are fee increases possible? How does the facility work with Medicare? Medicaid? Long-term care insurers?




  • Go over the contract with a lawyer. Even the most wonderful facility administrator is an advocate for the nursing home. You need an advocate for you and your loved one.




  • Keep asking questions. Even after your loved one has moved in, continue to be observant, and raise any issues that come up for you.




  • Befriend the staff. If you've taken care of a loved one with Alzheimer's disease, you know how difficult it is. Nursing home staffs have a lot of people to care for. They deserve your respect and support. And if you're kind to and appreciative of them, they are likely to take more personal interest in your loved one.


Moving the person to the nursing home


The actual move is often more traumatic for caregivers than for affected individuals. You're painfully aware of what's happening, and quite possibly feeling ambivalent, guilty, and stressed. Your loved one may not have much idea what's going on.



Should you tell the person about the move? That depends on both you and the affected individual. Some caregivers insist on discussing the move. To them, anything short of full disclosure amounts to "deception" and "kidnapping." Others feel less strongly about this. Meanwhile, people with Alzheimer's who took an interest in nursing homes early on, or who still have enough cognitive function to know what's happening to them, often feel better about being informed. Others, who have more advanced disease and may be incapable of understanding the transition, are better left uninformed.



In general, either tell people the truth, or say nothing. Don't consciously mislead by saying you're "just taking a drive," or "just going for a visit."



Some people with Alzheimer's disease resist nursing home placement, and accuse their caregivers of heartlessness. The more ambivalent you are about the placement, the more this is likely to hurt. Just remember: You're not heartless. You've made tremendous sacrifices to care for your loved one, and may, in fact, have put off the nursing home transition longer than you should have. All you're doing is what must be done.



Make sure you have the legal authority to move the person. Laws differ from state to state, but all states allow legal guardians of individuals with dementia to place them in nursing homes. You may need to consult an attorney.



During the actual move, take any items the person is still fond of: photographs, a radio, a favorite pillow, etc. Personalize the person's room to the extent that you can. But avoid cluttering it. Clutter may upset the person and cause problems for the staff.



Visiting and adjusting


Once the person has moved, try to visit often during the first few weeks.



Allow time for your loved one to adjust to the new surroundings. People have different adjustment periods depending on who they are and how severe their Alzheimer's is. Be patient. People adjust eventually.



If your loved one says the facility is abusive or begs to return home with you, offer understanding and reassurance (once you've satisfied yourself that no abuse has, in fact, taken place). Say things like: "You're too sick to be at home anymore."



As time passes, continue to visit. As the disease progresses, and your loved one no longer recognizes you, this may become painful, and seem pointless. However, Alzheimer's experts urge family members to keep visiting because even people with severe dementia seem to gain reassurance from the presence of family members.



During visits to a loved one with severe dementia, it's often difficult to figure out what to do. The person can't do much, and over time, remaining abilities fade. Consult with staff about what the person still enjoys, and do those things. Take a walk together. Share a meal. Listen to music. Or simply sit holding hands.



As the disease progresses, the affected individual may think you are someone else. Don't correct or argue. Just play along. Try to stay in the moment.



Visiting also helps you work out your own adjustment to the new situation. Initially, most people who trade daily caregiving for nursing home placement feel a combination of relief and disorientation. Alzheimer's care is so consuming that despite your best efforts to maintain friendships and other activities, you're quite likely to feel lost for a while, disconnected from reality beyond Alzheimer's care. Visits can reassure you that you're still connected to the person, and still providing some care, even as you withdraw from day-to-day caregiving.



Paying for nursing home care


The cost of nursing homes ranges from expensive to exorbitant&nbsp-- on the order of $25,000 to $50,000 a year. Paying for nursing home care requires planning, creativity, and ingenuity. It may precipitate conflict and resentments among family members. That's why you should start planning for it early -- ideally, shortly after your loved one is diagnosed with Alzheimer's disease.



Payment options include:

  • Self-financing. Affected individuals may have enough financial assets to pay for their nursing-home care. Of course, the person's assets may be tied up in a home and in various investments and insurance policies. You may have to do some detective work to locate them all.




  • Life insurance. You may be able to use the person's life insurance policy or policies to raise cash. Here's how:




    • Viatical settlements. In recent years, special brokerage firms&nbsp-- viatical-settlement companies&nbsp-- have made a business of buying life insurance policies for cash. The viatical firm has a physician examine the policy-holder, assesses how long the person is likely to live, and then offers to buy the policy for an amount that gives the policy holder immediate cash for long-term care while still living, and at the same time, gives the brokerage and its investors a return on the investment. Viatical settlements typically range from less then 60% of the death benefit if the person appears to have more than two years to live, to around 90% if the person appears likely to die within a few months.



      Say the policy death benefit is $100,000, and the viatical company believes the person's life expectancy is four years. The firm might offer $45,000. The family can then use this money to pay for nursing home care, and the brokerage collects the $100,000 when the person dies. If the person dies sooner, the brokerage makes more money. If the person survives longer, the firm loses money.



      For more information, contact the Alzheimer's Association.




    • Loans from life insurance policies. If your loved one has a "whole life" or "universal life" policy, it is usually possible to borrow against its cash value. (Cash value is different from the death benefit; check the paperwork or call the insurer to find out the cash value.) You have to repay the loan with interest. If you repay it in full by the time the person dies, the beneficiary receives the full death benefit. If not, the insurer reduces the death benefit by the amount of the unpaid loan balance.






  • A reverse mortgage. Reverse mortgages allow people age 62 or older to convert their home equity into monthly income that can be used to cover caregiving costs. Instead of you making payments to the bank, the bank pays you. But unlike a regular mortgage, in which you own more and more equity over time, with a reverse mortgage, the bank buys equity from you, and when it comes time for you or your heirs to sell the home, the bank owns a portion of it&nbsp-- or possibly all of it.



    Reverse mortgages are good alternatives for people with early Alzheimer's disease who want to stay in their homes, or in cases where a caregiver moves into the affected person's home. They work best, of course, for those who have considerable equity in their homes.



    Reverse mortgages are available through many banks, the Federal Housing Administration (FHA), and the Federal National Mortgage Administration (Fannie Mae). In general FHA reverse mortgages are most attractive to those with less than $150,000 of home equity. Fannie Mae reverse mortgages tend to be most attractive for those with home equity of $150,000 to $225,000. And private bank reverse mortgages are usually most attractive to those with home equity of more than $225,000.



    For more information, contact your bank, or consult the U.S. government listings in your phone book for FHA or Fannie Mae.




  • Long-term care insurance. With nursing-home care costing $25,000 to $50,000 a year, and the government periodically threatening to cut Medicaid payments for long-term care, many people have turned to long-term care insurance as a way to guarantee payment of nursing-home care. The problem, according to consumer groups, is that long-term care insurance policies rarely pay out as purchasers hope. So shop very carefully.



    Long-term care policies must be purchased before the policy-holder needs long-term care. The time to buy is as soon as possible after an Alzheimer's diagnosis. Unfortunately, some long-term care insurers do not sell policies to people with pre-existing conditions, such as Alzheimer's disease. Be sure to examine excluded conditions before you buy.



    Long-term care insurance rarely covers the entire cost of care for the remainder of the person's life. Most long-term care policies offer benefits that range from $50 to $200 a day, with a maximum number of days stipulated in the policy.



    The cost of long-term care insurance varies tremendously depending on:




    • The age and health of the policy-holder. The older and sicker you are, the more expensive the coverage.

    • The daily pay-out. The more money, the more expensive the coverage.

    • The pay-out duration. The longer, the more expensive.


    Check the coverage before you buy. Most policies have deductibles and elimination periods. You must pay a certain amount before the policy pays anything, and you must pay for a certain period of time before the policy coverage begins. Some policies have fixed premiums, while in others the premiums increase annually. Some policies require continued payment of premiums while the policy-holder is in long-term care collecting benefits. Others have a "premium waiver" that allows policy-holders to stop paying premiums while they are receiving benefits. Some policies' pay-outs offer inflation protection. Others do not.



    Read the fine print and talk with several brokers before you buy.




  • VA benefits. If the person is an armed forces veteran, placement might be possible in a Veterans Administration facility. For information, contact the Veterans Administration or the Alzheimer's Association.




  • Family. Family members might decide to pool their resources and pay for nursing home care. In some states, relatives are required to provide a certain amount of support for a certain time. Check your state regulations.




  • Medicare. Medicare pays for up to 150 days of nursing home care in cases of serious illness in those who need intensive rehabilitation. Alzheimer's disease does not qualify because currently there is no possibility of rehabilitation. However, if a person with Alzheimer's also has some other condition, such as a stroke, Medicare financing may be possible for a time. For more information, contact a Medicare office, social worker, the person's physician, or the Alzheimer's Association.




  • Medicaid. Medicaid is a federal safety-net program administered by the states. It pays for health care, including long-term nursing home care, for those who have no other financial resources. In most states, it is known as Medicaid, but some state programs have different names. For example, California's program is called Medi-Cal.



    Some people recoil from Medicaid because it feels like welfare. However, there is no shame in receiving benefits. It's rather like Social Security. People with Alzheimer's disease paid taxes before they got Alzheimer's, and some of that money went to Medicaid benefits for other people. Now that they need Medicaid, it's there for them. Medicaid currently pays the bills for about two-thirds of the nation's nursing home residents.



    Eligibility criteria differ from state to state, but in most states, people in nursing homes receiving Medicaid cannot have more than a few thousand dollars in total personal assets (which can be used for gifts and personal items). Individuals must "spend down" their own funds until they qualify for Medicaid, and then the program assumes the cost of their care for the rest of their lives.



    In cases where one spouse has Alzheimer's and the other needs money to live on, asset transfers can be arranged. This strategy enumerates the couple's assets, and divides them in two. (The couple's home is exempt as long as the unaffected spouse continues living in it.) The half belonging to the affected individual can then be spent on nursing home care until Medicaid eligibility has been established. The half belonging to the unaffected spouse can be used by that person with no restrictions, and those assets in no way make the spouse with Alzheimer's ineligible for Medicaid.



    However, asset transfers can be tricky. They must be arranged at least 30 months before the affected individual applied for Medicaid. In addition, you must keep detailed records, and present them for inspection when you apply. The Alzheimer's Association can help you arrange things. You might also need an accountant and an attorney. If you need a lawyer, find one experienced in handling Medicaid applications. For a referral, contact your local Bar Association.



    It may be a struggle to obtain Medicaid benefits &nbsp-- even if you're confident that the person qualifies. The reason is that states generally interpret eligibility criteria conservatively in order to save money. Be persistent. File appeals if necessary. For more information, contact the Alzheimer's Association or the National Citizen's Coalition for Nursing Home Reform, 1424 - 16th St. N.W., Suite 202, Washington, D.C. 20036-2211; 202-332-2275. You may have to hire an attorney.



    For more information on Medicaid, contact the nursing home you're considering, or your local or state departments of Health, Social Services, or Welfare.