The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss (A Johns Hopkins Press Health Book)

by Peter V. Rabins

how to see the person within the disorder and how to sustain that person in harmony with life despite the progress of the affliction.

Old social skills and the ability to make customary social remarks are often retained longer than insight and judgment. Thus, a person may sound fine to the doctor but in fact be unable to care responsibly for himself.

You may not be able to figure out what the person understood or intended. Because the brain is so complex, even the best experts are often at a loss. In addition, many families do not have access to a neuropsycholo-gist. Do the best you can; regard problems as the result of the brain damage, not as something you caused or something the person who has dementia intended. Affection, reassurance, and calm are best, even when things make no sense.

We use the term catastrophic reaction to describe this behavior. (The word catastrophic is used in a special sense; it does not mean that these situations are necessarily very dramatic or violent.) Often a catastrophic reaction does not look like behavior caused by an illness that causes dementia. The behavior may look as if the person is merely being obstinate, critical, or overemotional. It may seem inappropriate to get so upset over such a little thing.

When a professional evaluation is not available, you and your family must analyze each task as thoroughly and objectively as possible and decide whether the person can still do specific tasks completely, safely, and without becoming upset.

In addition, the person may be unable to make complete sense of what is going on. Even early in the disease, the person may completely forget recent events. If she has no recollection of leaving the stove on or of having an auto accident, she may reasonably insist that she can take care of herself or that she is still a good driver. She is not “denying” the reality of her situation; she cannot remember the mistakes that are evidence of her impairment. If she is not able to assess her own limitations, it may seem to her as if things are being unfairly taken away from her and that her family is “taking over.” By recognizing how she may feel, you may be able to find ways to help her make the necessary changes and still feel that she is in control of her life.

People who have dementia often lose the ability to entertain themselves. For some, idleness leads to pacing or other repetitive behaviors. The person may resist your suggestions of things to do.

dementia damages the brain, so the person cannot make sense of what he sees and hears.

A person who has dementia may begin accusing her spouse of infidelity.

Occasionally a person will insist that her husband is not her husband—he is someone who looks like her husband but is an impostor.

When they occur in the presence of an illness that causes dementia, they are usually the result of the brain injury or a superimposed delirium (see pages 309–10) and are not symptoms of other mental illness.

If she hears poorly, she may suspect conversations to be people talking about her.

“You Are Not My Husband” Occasionally a person who has an illness that causes dementia will insist that her spouse is not her spouse or that her home is not her real home. Reassure the person, “I am your husband,” but avoid arguing. Although this may seem heartbreaking, it is important for you to reassure yourself that it is not a rejection of you (the person does remember you). It is just an inexplicable confusion of the damaged brain.