After the Diagnosis: What To Expect
By Marilynn Larkin

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Once the diagnosis of Alzheimer's disease is made, you and the person with Alzheimer's are likely to experience the shock and denial that are hallmarks of the grieving process. At the same time you must begin dealing with the reality of the disease and start planning for the future. Knowing what to expect as the disease progresses can help you prepare for the consequences.

How quickly the disease runs its course and the types and extent of impairments that result may vary greatly from person to person. Eventually, however, Alzheimer's disease leaves the person totally unable to care for himself or herself. On average Alzheimer's lasts about eight years; however, it may last as little as two years or as long as twenty.

During this time, changes in the individual's personality, changes in relationships, and physical and emotional exhaustion are most common areas of concern for the caregiver, whether spouse, child, siblings, friend, or other relatives. Following is an overview of what to expect in the days, weeks, months, and years after a diagnosis of Alzheimer's is made.

Personality Changes

Alzheimer's inevitably changes the established behavior patterns that we associate with an individuals personality. Some of the more common personality disorders due to Alzheimer's include demanding, unreasonable, and combative behavior. Other symptoms may include confusion, disorientation, poor judgment, and language problems.

Relationship Changes

After a diagnosis of Alzheimer's, relationships undergo many changes and therefore can be a source of tremendous stress. Adult children may find themselves functioning in a parental role to their own parent, or a spouse may find himself or herself functioning as a parent. The person with Alzheimer's may feel the helplessness and dependency often associated with childhood, especially in the early stages when he or she is aware of the onset of impairment. He or she may feel unattractive, fear rejection, or display childish behaviors such as self-centeredness. These changes are difficult for all concerned.

Physical and Emotional Fatigue

Meeting the needs of a person with Alzheimer's disease requires an extended commitment of physical and emotional effort. New demands will be made on your time and energy, which you must meet in addition to the old ones. It can be very difficult to juggle all these responsibilities, and you may begin to feel pulled in too many directions at once.

To take some of the pressure off, remind yourself that you are human, have limitations, and can only try to do your best. By taking an occasional break from caregiving you will give yourself an opportunity to take stock, relax, and refuel. This is vital for you and for the person for who you are caring. No caregiver can function effectively and give to others if he or she is exhausted or burdened by a sense of unreasonable guilt.

Your Responsibilities as a Caregiver

As a caregiver for a person with Alzheimer's, you face many challenges. Unfortunately, as of now there is no cure for the disease, though researchers are optimistic that much progress will be made in the next few years. In the meantime you are charged with making the remaining years of the person with Alzheimer's comfortable and productive as possible. At the same time it is important for you to enjoy your own life as much as possible as well. Your caregiving responsibilities will be determined primarily by the course of the disease. In fact, you may not have fully adjusted to one stage of the disease before the second stage sets in and a whole new set of difficulties emerges.

It is also imperative that the person with Alzheimer's be under a physician's care as soon as possible.

In the early stages, when the person with Alzheimer's has relatively few symptoms, your responsibilities include being attentive to the person's needs, mitigating memory or communication problems, and staying alert to changes in the person's condition. You should also schedule regular visits with the physician. Another important step is commencing financial planning, including the execution of a living will or trust and assignment of durable power of attorney, and applying for any benefits the person may be entitles to.

In the middle stages of the disease, depending on the degree of impairment, you may also need to adapt your home for convenience and safety. Sometimes medications are prescribed to help with some of the symptoms of Alzheimer's, such as depression, or preexisting medical conditions such as hypertension. You will need to monitor and possibly help manage the medication schedule. You will also be coping with the changing personality of the person and possibly begin nursing and custodial care [personal hygiene, use of the commode]. By now you should also be actively participating in legal and financial decision making.

During the last stages of the disease, your responsibilities may include being as attentive as possible to needs that can no longer be express, maintaining the medication schedule, arranging for an alternative living situation, making plans for what will happen in the future, preparing for the eventual death, and saying good-bye in your own way.

Essential Caregiving Skills

The essential skills you will need during this process include the following:

* Good organization. You will need to keep track of medical, legal, and financial records, medication schedules, and schedules of others who are available to assist you in caregiving.

* Physical stamina. You may need to lift and carry the person, deal with custodial duties, and go without a regular sleep or meal schedule.

* Emotional stamina. You will need to deal with your own feelings toward the person with Alzheimer's, as well as that person's feeling and the feelings of other family and friends. You will need to be able to distance yourself occasionally from these intense and often contradictory feelings in order to function.

* The ability to deal with boring, repetitive, and often distasteful jobs. In the early stages you may be involved in exercises to help slow the decline of memory and speech; in the middle and later stages much of the work you will do revolves around food, elimination, and personal hygiene.

* The ability to manage the rest of your life, protect your own health an well-being, and make peace with death and dying.

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