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R & R

(Names and places have been changed)


The well spouse, despite the calm and in control mask s/he wears, tends to be a fragile creature. Life is full of constant stress, chronic sadness, fear of the future and pain over the loss of the present. ‘Most people have crises, we have Monday,’ was how one well spouse put it to me.

The need for a break, for rest and recreation is high. The ability to fill that need is often difficult. Well spouses cannot find the money, time or energy it takes to give themselves the break they so desperately need. Sometimes friends and family come to the rescue. Sometimes they add to the problem.

Rachelle was a well spouse of many years. Her children had grown and lived far away. As she was approaching 60, the many years of caretaking began to take their toll. She felt constantly tired, often depressed and forgetful. Just as Rachelle was reaching this point in her life, her husband began to deteriorate even more quickly and became more needy and demanding. She knew she needed a break, but Rachelle could not muster up the mental energy needed to put a vacation in place for herself. To make matters even worse, this had been the most brutal winter in years. There had been record snowfalls and below zero temperatures for months.

Rachelle had a friend, a good friend, and a caring and unusual friend who lived in a warm climate quite far from Rachelle. Whenever this friend called to check up on Rachelle, she heard the depression in her voice. This friend called one day to say that her husband was going on yet another business trip and she wanted some company. She was sending Rachelle a ticket to visit her. Rachelle could pick any week in that month, stay longer then a week if she liked, but a week was the minimum. Rachelle knew how much her friend enjoyed her ‘alone time’ when her husband traveled. She knew the request for company was an attempt to make her more comfortable with accepting the gift. It made the gift and the giver that much more special in Rachelle’s eyes.

Karen, like Rachelle was at the end of her rope. Years of caregiving coupled with three teen age children had taken their toll on her. It seemed that the last five years had been just one crisis after another. She had just been promoted at work as well. The new position meant more work and more stress, but she couldn’t turn down the new position because it meant more money. Karen’s friend, Aviva, had had to cancel a trip to Israel almost a year ago. The time to rebook the ticket was fast approaching. Aviva asked Karen if she could use the ticket. Karen said she would love to visit her sister, who lived in a different state, during the upcoming long weekend. Aviva agreed to give her the ticket.

Karen’s spirits soared. She was so excited about the chance to get away for four days and be pampered by her sister. All night long she thought about how much she would enjoy the weekend, what she would do, and how great it would be. In the morning, Aviva called and withdrew the offer. Aviva felt that Karen’s trip wasn’t worth the value of the Israel ticket and she would prefer to give it to someone who would go somewhere that would be closer to its value. Karen’s spirits fell to a level even lower than before, if that was possible.

Well spouses, like most of us, rarely announce their need and desperation. Few talk about their limited funds, especially if at one time they were quite comfortable financially. They have learned not to mention their need for R & R (recovery and rehabilitation) as we have so often told them by our words and deeds that their spouse’s needs are more pressing and come first. That is why a gift without strings; a loving caring gift disguised as meeting another’s needs (like the one Rachelle received) is so special.

It is not that Rachelle didn’t understand that the gift was really a favor to her, but she was left with her dignity intact and her spirit revitalized as they both pretended she was keeping her lonely friend company. She was the giver of the favor instead of the receiver.

Karen on the other hand, felt worse than empty. She told me that as difficult as it was managing before the ticket offer, she was managing. But going on that high, tasting that chance of getting away, only to have the dream taken away from her, left her feeling alone, somehow undeserving and empty. After the ticket offer was withdrawn, she went into a shell and isolated herself from everyone for a very long time.

Sensitivity to what we offer others in time of need must go hand in hand with how we offer it. Whenever possible, a helping hand should come offered without asking, be given without strings, and be just what is needed. Offers of help that are not thought out or which are withdrawn come with a heavy price tag can cause more harm than the good you intended to do in the first place.

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More Articles from Ann Novick

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.

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