Meir Panim delivers warmth, special care to families in need.
(Names have been changed)
Socially inappropriate behavior is part and parcel of chronic illness. Many ill people who need long-term care begin to feel that the basic rules of social appropriateness no longer apply to them. Others, filled with anger and resentment at being sick for so long, give themselves permission to cease being bound by the rules of politeness. And for others, rudeness and inappropriateness are by-products of the disease.
The filter that tells us how to react in social situations begins to disintegrate as disease progresses. Very often, the ill person has no control over this process.
Whatever the cause, having a mate who behaves poorly in social situations can put terror in the heart of the well spouse. S/he begins to fear what his or her spouse will say or do and how others will react. The well spouse is plagued by the fear that others will not realize that the deterioration in social norms is related to the illness. They wonder if former friends will want to associate with them. Sometimes, friends may blame the well spouse for the way the ill spouse behaves.
As a result, the well spouse may begin to refuse social invitations that he/she is really desperate to accept. The fear of inappropriate behavior adds a psychological burden to the other burdens of the illness.
A well spouse can often become angry as he is left to wonder if the embarrassing behavior is a by-product of the illness, or something the spouse just no longer cares to control. Either way, further strain is placed on the already overburdened marriage. Few people realize that illness often produces social deterioration, and neither partner can seem to stop it.
Yoseph suffered from M.S.. In addition to his physical symptoms, there was also a decline in his socially appropriate behavior. Psycho-neurological testing verified this decline, and the clinicians felt fairly certain it was caused by the plaque on his brain.
Yoseph’s wife was always fearful whenever they went out with other couples of what he might say or do. Unfortunately, his faux-pas were happening more frequently.
The last time they were out, they were with another family who had adopted their daughter at birth. The girl was now 10. Yoseph began asking her all sorts of questions about her adoption. When he finally noticed the child’s hesitancy to answer his questions he said, “You do know you’re adopted, don’t you?” His wife could only imagine what would have happened had the young girl not been told of her adoption. Meanwhile, Joseph continued the social interchange never having noticed what had occurred.
Judy had been chronically ill for many years when she suddenly began to display inappropriate behavior in social situations. Her husband tried to have people over to keep their life normal, and to keep Judy involved. However, Judy would just get up from the chair and leave the room without a word. Frequently, she did not return.
As Steven’s body began to become more disabled, his behavior became more inappropriate. His wife and doctors did not know if he really had no control, if he chose to have no control, or if he was totally unaware of his behavior. Meanwhile, much to his wife’s intense embarrassment, Steven would burp and flatulate in public, not bothering to even say excuse me.
Shayna fell asleep often. Her location or what was going on had no bearing on her sleeping. She would fall asleep in the middle of an important conference with her financial advisor, during a wedding, or at dinner with company. The sleeping didn’t bother or embarrass Shayna, but it upset her husband. Very quickly, people refused to visit, saying they did not want to disturb Shayna who clearly needed to rest more.
Shayna’s husband tried everything to deal with the problem. The doctor could find no physical reason for the excessive sleeping. After much debate with her husband, Shayna agreed to put water on her face, try to stay awake, or at least excuse herself and apologize. Shayna agreed, but never followed through. Her husband never knew if this was the disease or a choice Shayna was making. He only knew that her behavior was extremely upsetting.
A spouse’s socially inappropriate behavior is usually devastating to a partner in any marriage. When a spouse is ill, this is an added burden to the other burdens imposed by the illness.
The well spouse does not know whether or not the ill partner can control the objectionable behavior. And so, he/she is left feeling even more powerless in another aspect of the marriage and further isolated from friends.
The one thing that friends and family can do in this situation is not to desert the well spouse. Take your cues from him or her. If he tells you there is no reason to leave, even if his wife is sleeping at the table, don’t leave. If he invites you again, come back. Wherever possible, ignore the inappropriateness. If you find that too difficult to do, find times when you can socialize with the well spouse on his own. Social interaction is a basic need for most of us, and we should not allow the behavior of the ill spouse (whether deliberate or not) to take that away along with the other losses.
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Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.
Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.
I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.
Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.
Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.
Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.
Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.
Printed from: http://www.jewishpress.com/sections/magazine/social-inappropriateness/2004/09/22/
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