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March 6, 2015 / 15 Adar , 5775
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How Community Expectations Influence Your Reality


(Names and circumstances altered for confidentiality)


Doubt is a very powerful force. It slowly erodes what we know to be true. It can undermine our self-confidence and even change our reality. Doubt comes from many sources and very often in the form of innocuous comments from friends and family. The comments that may cause the most doubt may not be the loud ones. They may be whispers, simply asking why we made the decision we did about our loved ones care or why we aren’t afraid of an undertaking. Though said quietly, the effect is the same as if they had yelled, you’re wrong!” and suddenly you begin to rethink the decision you were so sure of moments ago.


Perhaps it is because well spouses are fragile, that the questioning works so well in causing self doubt. Or perhaps it is that each decision you make about the care of someone with a progressive, chronic illness will have consequences that are always new and certainly difficult for everyone in the family. Or maybe it is just universal for all of us to second-guess ourselves when our decisions are repeatedly challenged. Miriam had a week to herself when her husband was taken to a facility for respite. It was winter and her friend offered to let her use her Florida home, which happened to be empty. Even though Miriam knew no one in the area, she couldn’t wait to get out of the cold. That was until a friend quietly asked, “Aren’t you afraid to be by yourself? After all, you don’t know a soul there. What if something happens to you?”


At first, Miriam said she was fine, but soon another friend – and then, a relative asked the same question. “Aren’t you afraid to be by yourself?” Soon Miriam began to wonder. Maybe this trip was a mistake. Should she be afraid? Miriam made the trip anyway, but instead of the relaxed week she dreamed of, she jumped at every noise. Instead of taking in the sights, she feared going out at night by herself and read or watched TV, hiding under the covers each time the house creaked.

 

Riva had just given birth to her first child just two weeks earlier when her husband’s chronically ill mother was hospitalized. Riva was fine with her husband traveling to another city to see his mother. She felt confident enough in her new parenting skills. Her confidence quickly eroded, however, when each concerned friend told her that she couldn’t be left alone with her newborn. Many went so far as to admonish her husband, insisting he could not leave his wife right now, even if his mother was critical. With each unsolicited and unwelcome suggestion ranging from, “He must get you a baby nurse before he leaves!” to “Hire someone to stay with you,” Riva very quickly began to think she had overestimated her ability as a new mother.

 

Clearly everyone knew something that she didn’t or had learned, by experience, something dangerous about being alone that she was unaware of. Was she being a negligent mother to encourage her husband to visit his mother? In the end, they hired a baby nurse to help for the week and though the week went without incident, it took Riva months to regain her confidence as a new mother. Shayna picked up two passengers for a fundraiser they were all going to. Though she had never been to this location before, she felt pretty confident in her ability to follow the directions she had been given. However, it seemed to Shayna that every time she tuned a corner one of her passengers would say, “Why are you going this way?” or “Why are you turning here?” By the time they got to the location of the fundraiser Shayna began to question her driving competence, wondering if she needed a navigational assistant.

Most of us are vulnerable to criticism, even in areas in which we feel competent. But when we are unsure of ourselves or when the situation is a new one for us or when we hear implied criticism (all of which apply to a well spouse’s situation) we become even more vulnerable and the criticism takes on great power in eroding our confidence. We make plans. They are plans we are comfortable with. They are plans that will work for us and for our spouses – chronically ill or healthy. Suddenly our plans are questioned. “Are you sure you can leave him? Are you sure you should make the trip? How will she be able to manage while you’re gone?” or simply, Why are you going this way?” And suddenly, everything you painstakingly put into place doesn’t seem quite right and you begin to second-guess yourself. As important as it is for each of us to fight against these doubts that come packaged in unsolicited questions, it is equally important for those making the comments to realize that they are doing much more than asking a question. The confidence they are eroding may take a very long time to rebuild.



You can reach me at annnovick@hotmail.com

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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.

Dear Ann,

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.

Dear Ann,

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.

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