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The Ribbon - Care for Caregivers

Long Distance Care

Why do we see more cases of Alzheimer's now than ever before? The answer is simple. Previous generations of Americans didn't live long enough to fall victim to many of the diseases of advanced age. Many cases of Alzheimer's may simply have gone undetected for lack of proper diagnosis. Today we not only live longer, but our medical knowledge is greater. Unfortunately, the increasing incidence of Alzheimer's disease comes at a time when the number of potential caregivers is shrinking. Twenty years ago, most women stayed home to care for their children. Families were closer knit, and often three or four generations lived in the same area. When women worked outside the home, their jobs were often part-time, so if a parent became ill and needed care, a daughter or daughter-in-law could easily be found to provide it. Today many women, even mothers of young children, hold full time jobs and bring home paychecks that are essential to the family's budget. Many adults live hundreds or even thousands of miles away from their aging parents. Consequently, when a parent becomes ill, there may be no family member available to help. If you've just learned that your father or mother who lives far away from you has Alzheimer's disease, you face an especially difficult situation. But you are not alone. There are many new social services to help you. You have a wide range of alternatives from which to choose. Living in a distant city and learning that a parent or another relative has Alzheimers disease will initially raise many emotions: pain, fear, guilt, anger, and confusion. You will have to work your way through this maze of emotions to make the best, most intelligent decision for all concerned. To help you reach a decision talk over the various alternatives with a trained professional. Because they have the broad experience that comes from seeing many people deal with this situation, these professionals can serve as an emotional sounding board. They also know what kinds of resources are available. For example, when you learn your relative is ill, your first impulse may be to say, "He can move in with us. We'll take care of him." But professionals say that for an Alzheimer's patient, moving may not be the best idea. It can be very unsettling and has a great impact on the person's mentality - they may regress, temporarily or permanently. Generally, people who have been in one place for a considerable length of time, say five years or more, get disoriented upon moving. It has to do with moving from an environment that is familiar and safe to them, to one that is unfamiliar and therefore feels dangerous. When it comes to decisions like this, there are no rigid rules since every situation is different. That is why you should take the time to consider all the possibilities in order to make the best decision. Most caregivers want their loved one to live at home for as long as possible. However, don't neglect thinking about nursing home care now, before the need arises. Suppose, for example, the the Alzheimer's patient develops another disease that requires skilled, around-the-clock care. Or that the Alzheimer's disease itself progresses to the point where the patient requires intensive caregiving - more than you could manage alone. Choosing the facility that best suits your needs can be difficult and time consuming. You may find that some nursing homes are not set up or staffed to meet the needs of an Alzheimer's patient. Investigating nursing homes early, while you can do so in an unhurried and careful manner, can be a tremendous advantage to you as well as the patient. You need time to make an informed decision.

Case management "services" or "agencies" are another option for the long distance caregiver. These are a new branch of social work developed specifically to help family members who live at a distance from one another. Case management workers, sometimes referred to as private geriatric workers, supervise and take responsibility for all aspects of care needed by an aging family member.

Here are some examples of the assistance you can expect from a case management worker:

  • Will assess the patient's needs and make recommendations.
  • Will hire and supervise a home health aide or find an adult day care center or group home.
  • Will visit once a week to make sure everything is all right.
  • Will be available on a 24-hour basis.
  • Will keep in touch with adult children by phone and/or provide written reports.

What are the advantages of using a case management worker? Many have years of experience and are familiar with the special requirements of the elderly. You'll find that they are well-informed about local resources and can locate help you might not find on your own. What guidelines should you set? The case management worker should be aware of your financial limitations and stay within your budget. (if funds are low, perhaps volunteer help or a local special program that provides assistance to low-income older citizens can be found.) What should you look for in a case management worker? A competent, well-trained person with whom you feel comfortable.

Here are some questions you might want to ask:

  • What is your speciality? Most case management workers are social workers who specialize in a particular field and offer personal counseling. Case management workers may be nurses, psychologists, or gerontologists (gerontology is the special study of aging). The right person for you could have any of these specialities.
  • What is your training? Look for someone who has at least an MSW (master's in social work). In addition, most agencies require at least two years of supervised training before letting a case management worker function independently with elderly people.
  • What is your licensure or certification? Each state has different requirements, but it's important to make sure that the person you choose meets them. In some states, qualified social workers are licensed; in others they are certified.
  • Do you like your work? This question will help you get a feel for he person's personality. Case management is an intimate and personal service. You need someone who listens carefully to you, who inspires trust, and who will take the time to answer your questions. This person will be deeply involved in your family's life. It's important to find someone who "feels right" and can meet the specific needs of your family.
  • What are your references? A case management worker should be willing to provide references from two or three families who have already used the service. Their comments, both praise and criticism, can help you with your decision.

You'll also have to decide how you are going to pay the case management worker's fee. Unfortunately, health insurance pays only a small portion (if any) of the cost. Almost all case management agencies are private, for-profit organizations and charge a fee. Some cities however, do have public case management workers available to help low-income residents. How much should you expect to pay? Fees vary, depending on the qualifications of the worker, the skills and time required, and the geographic location. A very ROUGH ESTIMATE for private case management services would be $100 to $200 for the initial consultation plus an hour for regular supervision, with the average hourly fee at $65. Some case management workers prefer to charge a monthly, rather than hourly, fee for long-term supervision; some charge extra for special services such as home visits. But don't let the potential cost discourage you. A good social worker will be able to use home health aides, social work assistants, and other relatively low-cost services to create a complete care program that fits your budget. If you live far away from the patient, this service may be your best choice for providing adequate care. To locate a case management agency, write or call the agency on aging in the patient's home state. The state agency will tell you how to contact the local area agency on aging which will give you specific information on county and city resources near the patient.

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