The First Big Step: Discussing the Need for Long-Term Care

by by Joseph Matthews
From the Nolo.com Retirement & Elder Care Center

An open and honest discussion can help secure the right kind of care at the right time. Here is some advice about how to get started.

If you are the one who needs care, you may find it hard to discuss it with others because it seems a blow to your self-esteem, a subject that means you are really "old." You may also be reluctant to begin the process of giving up some of your independence, and fearful of what it may mean to give up full control over your life. And when you know you need the help of your family, you may hesitate to bring up the subject because you fear it will add burdens to their lives. If you believe that someone else -- a family member or other loved one -- is in need of care, you may be reluctant to bring up the subject because it may seem like a challenge or an insult. And within the family there may be anxiety, guilt and wide differences of opinion about what care is needed and from where and from whom it should come. The first step in providing needed care is to overcome this reluctance to talk about it.

Getting Help From Others

To get discussion underway and onto the right track, it is often best to look outside the family. An unrelated person can sometimes soothe ruffled family feathers, present a neutral opinion and offer solutions not considered by the family. Also, it's sometimes easier to reveal fears and other feelings to an outsider than to an involved family member.

There are a number of people to whom you can turn for help in beginning to evaluate long-term care needs. Here are some to consider:

Aging and Alcohol Abuse
Your personal physician is often a good person to start with, not necessarily to moderate discussions but to give a prognosis of medical needs and to refer you to others who may be helpful in making plans.
Traditional word-of-mouth is still one of the best ways to begin tackling any new problem. Friends and neighbors whose opinions you trust, and who may have already faced similar situations, are often a good source of information. The people at your local senior center may also know of sources for long-term care assistance. These word-of-mouth sources often let you know of "unofficial" personal care aides who would not be available through more formal channels.
A clergy member may be able both to help directly and to refer you and your family to professionals who can introduce alternatives and coordinate planning.
County family service agencies, Area Agencies on Aging or other senior information and referral services are experienced sources that can provide direct access to specific care providers as well as help you develop an overall care plan. These agencies can direct you to a counselor or social worker who specializes in long-term care for elders and who can help you begin your discussions and planning.
Once discussions are underway and residence in a nursing facility is not absolutely necessary, many people make use of the services of a professional geriatric care manager to see what at-home and other supportive services are available and to organize care from different providers.

Assessing Personal Needs and Capabilities

Equally as important but usually more difficult than assessing medical needs is determining what sort of personal, non-medical care is needed and what aspects of daily life a person can still manage without outside assistance. The question of the need and ability to care for oneself is not simply a matter of physical competence. Often, it is just as much about personality and emotional state. So, in addition to what kind of care is needed and the providers who are available and affordable, the ultimate decisions should depend a great deal on how important it is to the elder to remain in control of his or her own life.

Some people fiercely hold on to personal independence and privacy. For these people, who also have the ability to organize, manage and pay for individual programs to meet their specific needs, staying at home and receiving only minimal outside assistance may be both possible and extremely important.
Others may be willing to have an outside agency organize a more comprehensive care program, as long as they or their family members remain in primary control of daily life. For these people, an agency-directed program of home care in a family residence or in secured housing, perhaps combined with adult daycare, may be most appropriate if there are also family members willing to give additional assistance.
Still other people, however, prefer the security and ease of complete care organized and provided by others. For them, a residential care facility may be best, even though they may not physically require the high level of care offered there.

Laws Providing for Family Leave

The first days and weeks during which a family member's need for long-term care arises can be extremely difficult and stressful. Balancing a job with your attempts to understand, locate and arrange care can be overwhelming. Temporary unpaid leave from work can be an enormous help during this period, but businesses have done poor jobs of providing family leave on their own.

In recent years, however, many states and the federal government have stepped in to mandate that employers provide some unpaid leave when a family member needs attention because of a health crisis. In particular, the 1993 federal Family and Medical Leave Act provides some needed help. Under the Act:

Companies with 50 or more employees must give workers up to 12 weeks per year of unpaid leave to care for a child, spouse or parent with a serious health condition.
Companies must allow employees to return to their old jobs, or equivalent jobs at the same pay, when they return to work.
Companies must continue providing the same health benefits as when the employees are being paid.

However, there are some limits written into the law as well. Companies can limit medical leave benefits to employees who have worked there for one year at an average of 25 hours per week. And if companies doubt the medical need for the leave, they can obtain as many as three medical opinions and certifications on the medical need for the leave.

In addition to this federal law, some state laws are even more protective of workers, applying to businesses with fewer than 50 employees, and some providing longer leave periods. Some large companies also have their own leave policies that are more generous than state or federal laws require.

So, if you find that some unpaid time off work would help you organize long-term care for a spouse or parent, check your employer's policy and make sure it complies with federal law and the law of your state. And if, when you return to work after unpaid leave, you find that your job has been changed for the worse, you may be able to find legal recourse in your state law or the federal family leave laws.

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The First Big Step: Discussing the Need for Long-Term Care