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It is quite common for family members to feel guilty; for the way they treated the person in the past, for being embarrassed by the persons "odd" behavior; for losing their temper with the sick person; for not wanting this responsibility; for considering placing the person in a nursing home; and for other reasons, some trivial, some enormous.
You may feel guilty about your occasional outbursts when you are frustrated with the impaired person.
You may feel guilty about spending time with your friends away from the person you love, especially when the person is your spouse and you have been accustomed to doing most things together. You may feel vaguely guilty without knowing why. Sometimes people feel that the person with Alzheimer's makes them feel guilty. "Promise me you will never put me into a nursing home," or "You wouldn't treat me this way if you loved me" is something the confused person may say that can make you feel guilty.
Sometimes we feel guilty when a person close to us; whom we have disliked, develops a dementing disease.
Families sometimes ask if something they did or failed to do caused the disease. Sometimes the caretaking person feels responsible when the person gets worse. You may feel that if only you had taken more time with them or kept them more active they won't have gotten worse. You may feel that surgery or a hospitalization "caused" the condition to worsen.
The trouble with feelings of guilt is that, when they are not recognized for what they are, they can keep you from making clear-headed decisions about the future and doing what is right for the sick person and the rest of the family. When such feelings are recognized, they are not surprising or hard to manage.
The first step is to admit that feelings of guilt are a problem. They become a problem when they affect your decisions. If you are being influenced by guilty feelings, you must make a decision. Are you going to go around in a circle with one foot caught in a trap of guilt or are you going to say. "What is done is done" and go on from there? Often, when we look realistically at the situation there is no way to remedy the fact that you became angry with the person who suffers from dementia. However, guilt feelings tend to keep us looking for ways to remedy the past instead of letting us accept the fact that you can stop trying to make up for your guilt feelings and instead make decisions and plans based on what is best for your loved one.
When a person with dementia says things like, "Promise me you won't put me into a nursing home," it is helpful to remember that sometimes a person with Alzheimer's cannot make responsible decisions and that you must make the decisions, acting not on the basis of guilt but on the basis of your responsibility to your loved one.
Not all feelings of guilt are over major issues or keeping you from making good decisions. Sometimes you may feel guilty about little things--being cross with the confused person or snapping at them when you are tired. Saying "I'm sorry" often clears the air and makes you both feel better. Often the confused person, because they are forgetful, will have forgotten the incident long before you will.
If you are worried that you caused this illness, or made it worse, it is helpful to learn all you can about the disease and to talk over the person's illness with their doctor.
In general, Alzheimer's disease is a progressive illness. Neither you nor your physician can prevent this progression. It may not be possible to stop or reverse a multi-infarct dementia either. Keeping a person active will not stop the progress of such a disease, but it can help the person use their remaining abilities.
A person's condition may first become apparent after an illness or hospitalization, but often, upon closer examination, the beginning stages of the illness occurred months or years earlier. At present, earlier identification of Alzheimer's disease does not help to slow or reverse its progress.
If you don't feel right about doing things for yourself and by yourself, remind yourself that it is important for the confused person's well-being that your life have meaning and fulfillment outside of caring for them. Rest and companionship of friends will do much to keep you going.
When guilt feelings are keeping you from making clear-headed decisions, you may find it helpful to talk with an understanding friend, family member, or family that is going through the same thing. Learning that others may have similar feelings of guilt, may help you put your own into the proper perspective.
Rose Oliver ACSW (c) copyright 1993
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