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Meanwhile the family goes through the torturous process of saying goodbye over and over again. I can remember distinctly being called to the hospital. I was told to call my children and tell them to fly in, that it was time to say goodbye, at least six times. Like many of the very strong chronically ill, it was just a rehearsal for the end. But, you never know.
The first time Miriam was called to the hospital to say goodbye, she was so upset that she passed a stopped school bus and got a ticket for over $500 and more demerits on her license than she could handle. The second time was a bit easier, having gone through it once before. She wasn’t alone this time. Her daughter was visiting. With a bit little less panic, she arranged for her grandchildren to stay with a neighbor as she and her daughter ran down to see her husband. The third time she got the call, she was having coffee with a friend. Her friend was shocked at her outward calm, not realizing that inwardly she was falling apart, as Miriam took herself down to the hospital and stayed overnight, wondering if she should tell her children to fly in again. And, again her husband defied the predictions.
Do the rehearsals make dealing with the death – when it finally comes – easier? To my way of thinking, it does and it doesn’t. Because you have gone through the motions before, you know where to go, whom to talk to and what you need to do. In that way, it is somewhat easier. But, because you have gone through the emotions before, and you have that repeated hope to hold on to, it is torturous. Going through the pain of losing someone, repeatedly, doesn’t make it easier. It is just intense pain, repeated. But that is just one more gift given to well spouses by their partners’ diseases.
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What better proof do we need than the recent war with Hamas in Gaza, dubbed “Operation Protective Edge,” that transformed the pain and suffering of three families into a sense of unparalleled unity and outpouring of love of the entire nation of Israel?
So many families are mourning, and all along we mourned with them.
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David, an 8-year-old boy on the autism spectrum, recently attended a Friendship Circle event. As he entered he told his Dad, “I love coming to the FC programs ‘cause everyone loves each other.”
Goldsmith himself went on his own “voyage of discovery” to the places where his grandfather and uncle landed and were sent.
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Almost immediately the audience began singing and clapping and continued almost without stop throughout the rest of the concert.
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.
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/death-of-a-spouse-part-three-the-rehearsals/2006/09/13/
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