Shelly’s mother had cared for her all her life. Now it was Shelly’s turn. She kept her mother with her at home as long as she could. However, mother’s deteriorating condition, her inability to recognize her surroundings as well as handle her most basic needs like feeding herself and going to the bathroom, became too much for Shelly to handle. Heartbroken, Shelly made the decision to place her mother in a nursing home.
Shelly’s sense of isolation started turning to depression. She no longer had her mom, who had been her best friend. She got little response from the busy nursing home workers. When she was there, she had trouble grabbing their attention or even getting them to make eye contact. When she wasn’t there and called to find out how mom was doing, no one answered the phone. Guilt feelings began to corrode her spirit. She felt she had abandoned her mother to some impersonal machine that clothed and fed and bathed her but felt little.
Shelly was far from alone, but she didn’t know it. There are so many like her, in nursing homes all over the country. Nursing homes do not intend to be heartless. Many of them, however, are based on an antiquated model, the hierarchical structure of a hospital. Hospitals are large, impersonal institutions whose focus is medical care, run by doctors who give orders to nurses and nurses who give orders to their aides. They are not intended for extended stays. A nursing home, however, is usually where the person lives and stays and where she will end her life. The nursing home is, literally, the person’s home.
Running a nursing home like a hospital is debilitating not only to staff but especially to the residents. Direct care personnel who say little to them, don’t smile, and don’t knock when they enter the resident’s room contribute to a resident’s sense of aloneness and to institutional depression. There has been growing recognition of this in recent years. A “culture change” movement formed, with model facilities meant to feel more like a real home and a more humanistic approach to caregiving. This movement has had sporadic influence, but that influence is receding. Hard economic times and the move to managed care have pushed culture change off the list of highest priorities.
Family members therefore need every resource they can find to make themselves feel supported and empowered. Fortunately there is one resource available to them by law, and that is the family council. Federal regulations give family members the right to organize and meet as a group within the facility. The home must provide the group with a space where they can meet in privacy. The home must also make available a staff contact person, who provides assistance when needed and responds to written requests. Finally, the home is required to listen to the opinions and grievances of the family council and to act on them.
The family council has full autonomy. They can run their meetings how they like, and can invite whomever they wish. Whether staff members, including the contact person, attend meetings is up to the council, and the council may invite such people to attend either the whole or part of a meeting. Sometimes facility administrations try to control the meetings, but by law family members have the right to be in full control of each meeting and determine its agenda.
Many states add extra provisions to these federal guidelines. In New York, for example, the facility must respond to written inquiries by the council within 10 working days, must upon admission inform family members of the existence of the family council, and must mail notices of family council meetings at least quarterly.
Family councils are free to govern themselves according to family members’ wishes. Many councils elect officers and draw up a set of bylaws; this keeps them well organized and focused in dealing with the administration. If you need help with creating bylaws, samples are available on the web, or you may contact your local long-term-care ombudsman for assistance.
There are several possible ways to structure a meeting. Above all, family members need to know they are there to support each other. Family members need to show concern not only for their own particular problems but for everyone’s. This increases group cohesiveness and enables the council to speak with one voice.
Should members of the administration or staff be invited to attend or speak? This depends on the needs of the council and the culture of the particular nursing home. If the administration has a history of being unresponsive, its presence at meetings might not accomplish anything. However, if there is a good working relationship between administration, staff, and family members, then having representatives from the facility present at meetings can do much to help that relationship grow. One need not have them present for the entire meeting. Some councils reserve private time just for members to deliberate and prepare their presentation. After that the facility representatives can enter and the members can present their concerns.
It is a good idea to ask the facility to send out monthly notices of meetings, if the council meets monthly. While there is generally no obligation to do so, many nursing homes will make this accommodation if asked. It is also helpful to use this monthly mailing as an opportunity to inform family members of the existence and function of the council and what it has accomplished.
It is also advisable for the council president or a designated member of the council to draw up a list of the concerns discussed at each meeting and share it with the administrator. This creates a paper trail documenting the issues raised and how the administration has agreed to address them. The council can also refer to this document at the following meeting in order to monitor progress.
Remember that it is your right to form a family council if you so choose. A good family council can do much to improve the residents’ quality of life and, just as important, to help family members feel they are not alone.