Challenging Behaviors for the Caregiver
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and Alzheimer's Disease:
Questions and Concerns of the Caregiver
Problems and concerns about intimacy in a relationship affected by Alzheimer's disease are varied and complex. The new reality brought on by Alzheimer's often demands new behaviors and different expectations in the marital relationship. Each caregiver must ultimately decide what is best for himself/herself based on his or her own circumstances. The following questions address common concerns of caregivers.
HOW CAN I DECIDE WHAT IS SEXUALLY APPROPRIATE FOR THE PERSON WITH COGNITIVE LOSSES?
It is often difficult to know what is in the best interest of the individual who cannot clearly communicate his or her needs. This may be further complicated when our own needs are intimately intertwined. We all need warmth and tenderness; these needs may be particularly heightened in the person with Alzheimer's disease. A caregiver asks if it is rape if an individual with Alzheimer's is compliant but doesn't understand? If the individual enjoys or initiates intimate behavior and it is mutually satisfying to both parties, sex may be a familiar way of comforting and reassuring the person whose sense of self is eroded by Alzheimer's disease. The most confused individuals with Alzheimer's is still a sexual being. Attending to these needs is an important part of caring for the person with Alzheimer's.
WHAT ARE MY SEXUAL OBLIGATIONS AS A SPOUSE?
Changes brought about by Alzheimer's can gradually chip away at feelings necessary for a satisfying intimate relationship. Feelings of love, grief, anger, and helplessness can change how the caregiver feels and relates to the affected spouse. Previous feelings of love may diminish when the person is no longer able to attend to the feelings and needs of the caregiving spouse; or when the persons behavior becomes demanding or aggressive. Your obligations for your loved one must be balanced with your obligations to yourself. When continuing the sexual relationship is no longer satisfying, you have the right to end it and find new ways of relating to your spouse.
HOW MUCH SHOULD I CONSIDER MY OWN NEEDS?
You are not disloyal to your spouse when you consider your own needs. Alzheimer's creates special needs for the affected person and seriously compromises his or her ability to fulfill the obligations as a partner in marriage. This does not negate the rights of the caregiving spouse who now must adapt to the changing relationship and who must find acceptable ways of meeting his or her needs. Most often, the dilemma for the caregiver is deciding what is "acceptable". Is it fair to be concerned about my needs when he or she is so sick? To continue the task of caregiver, you must find sources of renewal for yourself. This means taking care of the whole person--physically, emotionally, and spiritually.
HOW DO I DEAL WITH HYPERSEXUALITY AND ACCUSATIONS OF UNFAITHFULNESS?
Sexuality is an integral part of our personality. The need for affection and to feel sexually attractive are needs which may be expressed on a physical, emotional, or spiritual plane. Some couples have been able to adjust to the losses created by Alzheimer's by creating new levels of intimacy, including a relationship of celibacy which is mutually satisfying to both partners. This is a very personal, complex process including many factors not within the couples control, such as personality changes created by dementia. Couples who have been able to maintain a physical relationship, report that this adds significantly to a sense of well-being for both the patient and the caregiver. Other caregivers, however, grieve for the companionship and emotional fulfillment which is no longer possible with a person whose condition precludes rational and emotional involvement. As a caregiver, your need for affection and sexual intimacy does not end because your spouse can no longer respond to your needs. Each caregiver must decide how to meet intimacy needs, whether choosing celibacy or becoming involved in other things or with other people who provide nurturance and fulfillment.
MY SPOUSE IS NO LONGER PHYSICALLY ATTRACTIVE. HOW DO I HANDLE GUILT OVER SUCH A SUPERFICIAL CONSIDERATION?
Sexual attraction depends on many things, including the physical attributes of one's partner. When the person with Alzheimer's begins to be lax in hygiene, the caregiver may react with strong emotions which preclude sexual feelings for the AD person. The caregiver should not feel guilty about the lack of sexual attraction for a partner who may have changed greatly in personality or behavior.
HOW DO I HANDLE EMBARRASSMENT OF PUBLIC DISROBING, MASTURBATION, OR INAPPROPRIATE SEXUAL ADVANCES?
Explicit inappropriate sexual behaviors are rare; however, when they do occur the caregiver is often unsure as to how to handle the situation. The first step is to understand the reason behind the behavior. It is important not to over-react. Over-reacting may reinforce the behavior we are trying to avoid. Determine beforehand how to respond to unacceptable behaviors makes the caregiving task less threatening for both you and your loved one. Certain inappropriate behaviors in the privacy of your own home may give cause for concern. In the presence of others, the same behavior may cause embarrassment, anger, or disgust. It may be helpful to observe when and where the behavior occurs, what might trigger it, and develop a number of immediate strategies to distract, divert, and attend to the basic needs of the individual.
Based on Sexuality and the Alzheimer's Patient. This article was reprinted from The Alzheimer's caregiver, a Living Centers of America Publication. Written by Edna L. Ballard, a Clinical Associate in Social Work and Senior Fellow of the Center for the Study of Aging and Human Development.
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