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

By Attorney Joseph L. Matthews, Nolo

An open discussion can secure the right kind of long term care at the right time.

If you need long-term care, you may find it hard to raise the topic with others because it seems like 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 or surrendering full control over your life. And when you know you will need the help of your family, you may hesitate to raise the subject because you don't want to become a burden.

On the other hand, 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 who should provide it. The first step in getting necessary care is to overcome this reluctance to talk about it.

Getting Help From Others

To get the discussion underway and stay on 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 the family might not know about. Also, you and your family members may find it easier to reveal fears and other feelings to an outsider than to an involved family member.

Here are some people who can help you begin to evaluate long-term care needs:

  • Your personal physician is often a good place to start, not necessarily to moderate discussions but to define medical needs and refer you to others who may be helpful in making care arrangements.
  • 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 to help directly or 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 and 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 can help you begin your discussions and planning.
  • If 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.
  • If your loved one has Alzheimer's disease or a similar mental impairment, you can turn to organizations that specialize in this disease.

Assessing Medical Needs

Because a specific physical or mental condition often leads to the need for long-term care, one of the first things to do is get professional advice both about the need for immediate care and about likely changes in the condition over time.

Talk first with your primary care physician; he or she may refer you to a geriatric specialist for further consultation. If you are not completely comfortable with the physician's assessment, seek a second opinion.

Another excellent resource to help you assess medical and personal care needs is a geriatric screening program. Local hospitals have them, as do community and county health centers. If you have trouble finding a geriatric screening program, check with the county social service agency or local Area Agency on Aging, or call the senior referral number in the white pages of the phone book.

Assessing Personal Needs and Capabilities

You will also have to figure out what sort of personal, non-medical care is needed and what aspects of daily life the elder can still manage without outside assistance. The need and ability to care for oneself is not simply a matter of physical competence. Often, it depends just as much on personality and emotional state. So don't just consider what kind of care is needed and whether providers are available and affordable. The ultimate decisions should also depend 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, it may be important to stay at home and receive only minimal outside assistance (if they also have the ability to organize, manage, and pay for individual programs to meet their specific needs).

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 the best option, especially if family members are willing to give additional assistance.

Still other people 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.

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