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December 25, 2014 / 3 Tevet, 5775
 
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Sweating the Small Stuff

(Names changed)


 


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. It is easier to say I miss having a bathtub in my bathroom because we had to turn it into an accessible shower, than to talk about the loss that accompanies a spouse who can no longer stand. It is easier to be angry when you have to buy a large minivan with a ramp when you really want a Smart Car than to be angry at the illness that forced you to make that choice. And so well spouses will often, verbally, “sweat the small stuff.” They will risk the comments of, “Oh you’re being ridiculous.” Or “What’s the big deal?” It is preferable to dealing with the real issue, the cause of the accommodation, the reason you have to make the choices you do. It is easier than hating the situation you have found yourself in for the last several years.

 

            The first purchase Joyce made several months after her chronically ill husband passed away and she was starting to put her life back together was a coffee table. “I had always desperately wanted a coffee table but we couldn’t have one. It blocked his passage through the living room. We always had to be mindful of the traffic pattern through the house. First we had to accommodate the cane, then the walker and later the wheelchair. The OT had been very specific about traffic patterns and barriers. It started thirty years ago, at the beginning of the illness, and that was the beginning of my non-existence. What I wanted couldn’t be accommodated. What he needed had to be accommodated. I know it sounds stupid and mean spirited, but after 30 years of always wondering how every change you make in your home and in your life will work for him and never being able to say ‘But what about what I want?’ you get mean spirited. You wonder, ‘When is it my turn? When can I have one thing that I need and want?’ And that was the coffee table. It was my turn.”

 

            For Joyce, the coffee table was the symbol of her new life. It was a window into her future. A future where she could consider her needs and wants, for the first time in a long time. Joyce knew it wasn’t really about the coffee table. She even confided in me that she didn’t like it there after all the years without one. But she had to buy it. And she knew she’d keep it there for a while even though she found it inconvenient. It was all about what the table meant in her mind more than in her living room.

 

            For Gittle it was folding the challah cover on Shabbos. As her husband’s disease worsened and Gittle’s care giving chores increased, she discovered a volcano of anger erupting every time her husband handed her the challah cover to fold before he cut the challah on Shabbos.  “Can’t he at least fold the challah cover and put it on the table? Why does he have to hand it to me to do along with everything else?” At first Gittle couldn’t understand her own anger. All she knew was that as her husband’s condition worsened and household tasks and care giving took up more and more of her waking hours, her anger at being handed the challah cover grew. They even had fights about it. Yet he kept handing her thechallah cover and she became more and more resentful. It was only after her husband’s passing that Gittle began to realize that it was not the challah cover per se that she was so angry about but what it represented. Unconsciously it symbolized, to her, all the added work the illness had forced upon her and all the tasks that were once her husband’s that she now had to do. Whereas, she couldn’t be mad at him for how the illness had changed her life, she could be mad at him for not folding the challah cover but giving the job to her to do.

 

            Many people get upset when they hear well spouses complaining of the little inconveniences they go through. They don’t understand why they make such a big deal out of what, to them, is nothing. But for a well spouse, the little thing is a symbol of the massive loss, the universal change in their life that has affected every aspect of their marriage and their very existence. It represents every dismal change they have had to endure in order to make their spouses life easier. It reflects the feeling that, once the illness began, their very existence started to disappear. And seeing it that way makes it not so small after all.


 


You can contact me at annnovick@hotmail.com

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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

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.

Printed from: http://www.jewishpress.com/sections/magazine/sweating-the-small-stuff/2009/10/28/

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