Coping Memory Loss, Part One

by Emily Carton, Geriatric Social Worker

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It stresses you. It stresses your parent's caregiver. You want to scream. You want to yell! You try reasoning. You try begging. You can't believe it, but you even try threats. Suddenly your mother or your father is belligerent, says no! He will not change his clothes. She will not let his caregiver help. Sometimes words and attitudes that you never saw before in your parent spray forth and shock you. What shocks you more is your growing lack of patience, of understanding, of comprehension. What is happening? Is it willfulness, stubbornness, or just an attempt to be in control at the expense of everything and everyone else?

There are many reasons for the attitude that your parent's is showing. Some call it resistance, other's call it reluctance, some see it as pure defiance. I prefer to think of it as an individual's attempt to hold onto the sense of authority over his own life.

Most people cling to their independence. Especially in the early stages of memory loss, there is a great deal of denial on both sides. Your parent or aging relative does not want to accept what is happening and may not even be fully aware of his or her decline. For you, the adult caregiver, the loss of memory and the personality changes that your parent is exhibiting is probably one of the most difficult things to see. Exasperating as the day to day issues may be -- how to make a day run smoothly, the feelings that accompany this task, the sense of loss and the grief of losing someone you love, is devastating. For the person who is losing his or her faculties, the experience is nothing less than terrifying.

You need to begin the process of caring giving for someone with memory loss by accepting that there are changes going on and that the changes are both frightening and fill both the victim of the disease and the caregiver with an array of emotions that spread from grief, to anger, to guilt and to rage. You might be infuriated and scared at what is occurring and the fact that your suggestions for controlling the situation go unheeded can make you feel as if a difficult situation that you are trying to handle is being blocked at every step.

To cope with these issues, and the ones that can continue to escalate as memory decreases, is a creative process with no simple one, two, three answers. Each issue must be dealt with one at a time in a slow, calming fashion. Confrontation is not necessarily the answer, but a gentle approach of redirecting behavior and establishing patterns where your parent or older relative is made to feel, that despite any losses, he or she is still in control. No matter what the issues are make certain to validate you parent's feelings and show that you understand.

For those who are in the early stages of memory loss it helps to keep calendars, clocks and reminders posted around the house. Order is a necessity and keeping possessions simple and labeling where things belong can be of help. A simple routine can be very helpful. It is important at this stage, as in all stages of memory loss to allow the older person to make as many decisions as possible. Let them choose what they will eat, what they will wear. You can narrow the choices down, but make certain there are choices.

Simplify the world around them. Too much noise can be distracting as well as annoying. Too much clutter makes locating things more difficult. Pathways around the house need to be cleared of unnecessary papers and objects.

Diversion is a useful tactic when someone is resistance to help. When a parent is about to repeat a task that has already been done or to repeat a story for the sixth time, gently change the subject to something of interest. Put on his or her favorite music, bring out old photographs, bring up a topic that you know brings back happy memories. If the person becomes irritated, take a break and go back to the task if the emotions have subsided. Sometimes a break is enough to make the person forget that they were annoyed by what was occurring a few minutes earlier.

As difficult as it may be, learn to ignore as much as you can. This is not easy but correcting someone whose memory is impaired can be humiliating and make the person feel demeaned. In addition it won't change the facts that they can't remember. In all aspects of life, you need to choose what issues are truly important and which you must ignore. Does it really matter if your parent's clothes don't match or the bed is not longer made correctly? Only life threatening situations or ones that may prove harmful need to be actively addressed.

While it is easy to write this kind of advice it is not always easy to follow. You are watching someone you care about decline and act in ways that would try the patience of anyone. It is a reminder that you, too, are experiencing a significant loss. Your feelings are as important as those of your parent. Your frustration at having to do a task that normally takes five minutes but now takes twenty is perfectly understandable. Find a place to vent your feelings. It is inevitable that frustration and anger will build and all those feelings need to come out. Forgive yourself for feeling angry. It is not an easy situation to cope with.

Continued in Part 2

Some resources: The Alzheimer's Association has support groups for caregivers and for those suffering from the disease. Call the National Headquarters at 800-272-3900.

Check out our online resources for information on other Alzheimer's Web sites.

5/29/98

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Emily Carton is a Geriatric Case Manager with ElderOptions in Washington, DC.

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