Dealing with a nursing home used to be like living in the Old West.  Each nursing home pretty much decided for itself how it would care for its residents: if you didn’t like it, you could leave.  If you tried to change things, you were on your own.  There were few laws, and those that did exist were rarely enforced. 

It would be foolish and untrue to tell you that all of this has changed.  Enforcement of state and federal laws leaves much to be desired.  But there are laws.  Some of them are followed.  Some of them are enforced.  Some of the laws provide real protection to vulnerable nursing home residents.  Nursing homes are now required to consult with residents and their families to create individual plans of care, and  to reasonably accommodate the individual wishes of their residents.  Nursing homes may evict their residents for only limited reasons, and must follow specific procedures in doing so.  Nursing homes are now limited in their legal ability to use restraints and psychotropic drugs to tie down residents and sedate them.   Nursing homes in Illinois have minimum staffing requirements.

Good nursing homes try to obey laws regardless of whether the government will punish them for not doing so.   Even for residents in the best nursing homes, however, having informed and assertive family and friends can vastly improve their quality of life.  For residents and families who need help getting appropriate care from their nursing home, there are public and private agencies that can help residents get the care and services they need.

Illinois Citizens for Better Care is one of those agencies.  Since 1978, ICBC has been Illinois’s nursing home resident advocacy organization.  Our members are nursing home residents, their friends and relatives, and public health and other professionals who want to improve the quality of care nursing home residents get.   ICBC wrote the Illinois Nursing Home Care Act, a law that became a model for state laws regulating nursing homes throughout the country.  We wrote the Illinois law restricting the use of restraints and psychotropic drugs on nursing home residents, and led a successful fight against nursing home industry attempts to repeal that law.  We were one of the leaders of the effort that resulted in major nursing home reform legislation in Illinois in 2010 and 2011.  The information we are sharing with you is the result of the years of experience we and our members have had in helping thousands of residents and their families deal with nursing home problems.

Most people start dealing with a nursing home knowing nothing about what to expect.  They rely on the expertise and good will of the nursing home staff to provide everything their relative needs.  Even if they think something is wrong, they may not intervene for fear of being thought pushy, or of having their relative treated badly in retaliation.

Nothing we tell you can make having someone you love being in a nursing home, an easy experience.  But there are many things we can tell you that can make the experience easier on both of you.  Some of these are suggestions for what you and your family can do on your own.  Some is information about the legal obligations and usual practices of nursing homes.  And some is information about how to get help when you need it.

The decision to place your relative in a nursing home is one of the most difficult you will ever make.  Your decision usually will be made during a health care crisis, for someone who is in the hospital after suffering a heart attack, stroke, or hip fracture.  You will usually make it on the advice of a doctor or social worker who says your relative “needs nursing home care.”  If the resident is entering directly from home, it is most likely because her family is no longer able to care for her after a long period of trying.  

You probably chose the nursing home when you were physically and mentally exhausted.  You may well have been under pressure from a hospital to move her out quickly: many families are given no more than one or two days to find an appropriate facility.  Most families know little about how to pick a nursing home, or what to expect afterward, and are able to do little research or preparation.  We have information elsewhere on this website about How to Choose a Nursing Home in Illinois, which we hope will help you in your search.

What makes this experience even more difficult, of course, is that you are making the decision for someone you love.  The guilt so many people feel — the sense that you are abandoning someone who took care of you, to people who can never know or love or appreciate her as you do — can be so paralyzing that they are unable to act assertively to see that their relatives get the best possible care.

By giving you concrete ideas about what you can do, we hope to help you understand that you have not abandoned your relative, but, in fact, become more necessary to her than ever.  Dealing with a nursing home to get good care for your relative is going to be a difficult experience.  We want to help you do your best for your relative, and make her life the better for your efforts. 

We write from the assumption that the nursing home resident you are concerned about, needs you to advocate for her because she is no longer able to do so for herself.  A person does not lose her rights because she enters a nursing home.  Unless she is found incompetent by a court, or her doctor certifies that she is not capable of directing her own care, a nursing home resident is her own health-care decision-maker, even if many of the staff and other health care providers she meets assume otherwise.  One of the most important services you can perform for a resident is to make sure that the judgments she is able to make for and about herself are respected and complied with, and, to the extent she is not able to make decisions by herself, she is involved as much as possible in making decisions about the quality of her own life.

One final note:  You will see that we refer to the resident as "your mother" or "she."  This is because most nursing home residents are women, and most often the people trying to help them are their children.  The advice we are giving you applies equally to men and women living in nursing homes, and to all the people who want to help them.