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July 28, 2014 / 1 Av, 5774
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Not All Mourners Sit Shivah

(Names and situation changed)


 


         In a family, where chronic illness lives, there are many caregivers. There is, of course, the well spouse. The primary workload, whether mental or physical, falls on him. He is the one that needs to make all the arrangements when he is unable to do the actual care himself. He is the one who will get called during the day or in the middle of the night to assist, when other caregivers are not present. He is the one that is “on duty 24/7.”

 

         Then there are the children. Age is irrelevant. Even very young children quickly learn that they are the caregivers of the chronically ill parent. “No,” is never an allowed response to an ill parent, no matter how the child feels or how involved he is in what he is doing. No one has told this to these children. It is just second nature. Guilt, because they are in good health, is often a constant companion. They learn from an early age that they rarely come first. The illness has made sure of that.

 

         And, of course, if chronic illness has struck someone young, there is the parent caregiver. She, like the well spouse, is never off duty and lives with a gamut of conflicted emotions. That is the immediate family. They have been there from the beginning. They are the ones who know chronic illness as the constant shadow that never leaves. When the illness runs its course in 120 years, these are the people who will sit shivah for the deceased.

 

         But there are others in a family who get to meet chronic illness later in their own lives. Often, they come into this family knowing the illness exists. Not having been there from the onset, they come with a whole different emotional relationship to the ill person. These are the people who have married into this family – the daughters- and sons-in-law of the adult children, or perhaps, the second spouse of the parent of the ill person. Or maybe even an in-law grandchild.

 

         When the illness runs its course in 120 years, these are the people who will not be sitting shivah. They will be the ones making sure all goes smoothly for the mourners. They will be the ones preparing the food, fielding the phone calls, consoling everyone. But these are the people for whom the love and sense of loss is sometimes even deeper than for the immediate family. Yet, few of us give them consolation.

 

         Aaron had a great relationship with his chronically ill father-in-law. From the time he married Hindi, Aaron had set aside time to learn with him once a week. Aaron enjoyed his father-in-law’s sense of humor and the unique perspective he brought to what they were learning. Aaron respected his father-in-law’s wealth of knowledge and always walked away from the learning session with new insights. His father-in-law always made him feel special by praising him and listening to his contributions with interest. They also made sure to eat together once a week and just “shoot the breeze.”

 

         Aaron was always eager to share what he was doing with his very attentive father-in-law. Not having grown up in a house of illness, Aaron had none of the ambivalent feelings or resentment that can exist, often hidden, deep down in the child that has been a caretaker for most of his life. And so, when his father-in-law passed on, Aaron was devastated by the loss. But Aaron was not the “mourner.”

 

         He was the one called upon to make all the arrangements for the funeral. He was the one who would get the minyan together so his brothers-in-law could say Kaddish. He was the one to whom everyone took their requests and complaints. He spent the week of shivah doing and running so the mourners could mourn. He had no time or opportunity to cope with his own feelings of devastation at the loss of someone he held so dear. No one asked him to reminisce with stories of his father-in-law, nor was he offered words of consolation. He was not an official mourner.

 

         Sarah, like Aaron, had a wonderful relationship with her mother-in-law. She had been her “second mother” and was there for her when Sarah’s own mother had passed away. People often commented on how close they were. But when her mother-in-law passed, Sarah, not an official mourner, took on the role of taking care of the mourners. She served the meals, kept the house clean and neat and made sure the mourners were cared for. She dealt with whatever needed doing so those sitting shivah weren’t disturbed. By the end of shivah, Sarah was not only exhausted but had not had the time or opportunity to deal with her own pain at the loss of someone who felt like a mother to her.

 

         It is important for those of us going to a shivah house to remember the “unofficial mourners.” Their pain can be as great, and in some ways, even greater than those of the people actually sitting shivah. We need to acknowledge their loss and give them the same caring we give the actual mourners. Otherwise, they are thrown back into life immediately after shivah without ever having a chance to deal with the tremendous hurt the loss has brought them. We need to give them as well, an opportunity to heal.

 

         You can reach 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.

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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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