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September 23, 2014 / 28 Elul, 5774
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Out Of The Eyes Of Grandchildren


(*Names changed, where requested)


 


Normalcy is relative. It is what you become used to. The more frequently something occurs, the more we see it as normal. This is especially true for young children. Children are generally open, honest and curious. They see most things as normal, unless we tell them it isn’t normal. They believe what we tell them. They accept all sorts of unusual things as “how they are” and just deal with them.

 

The grandchildren of the disabled and chronically ill often see the illness and even the deaths of their grandparents as just part of their daily life. They accept that the feeding tube will help Zaidy get better and so it is a good thing. They are not disturbed by it, as we are. They are comforted that Bubby is now in heaven and happy. It is neither positive nor negative, it just “is.”

 

And so, coping for them is often easier then it is for their parents who have memories of healthy partners and parents and have lived through the “change to illness,” the new “normal.” Many well spouses have shared with me the upbeat and comforting comments made by their young grandchildren in times of terrible adversity. These comments have given them strength.

 

 

Chana’s story:

 

“There was a message left on my answering machine the week before Rosh Hashanah. It was from my eldest grandchild. He is five. The message said, ‘Hi Bubby. It’s (he proceeded to say all his four names, including his last name).’ I guess he wanted to make sure I really knew who was calling and to distinguish himself from all the other five year olds leaving messages on my machine. The message continued. ‘I have something very important to talk to you about. So please call me back when you get home, right away.’

 

“When I returned his call, he began to tell me very seriously, what was so important. ‘Bubby, we’re going apple picking from school. I’m going to pick the biggest, most giganticist apple for you and Saba (grandpa). I want you to cut it in half. Half is yours. The other half¼cut into tiny, teeny pieces and then mush up the pieces and put them into Saba’s tube (feeding tube). OK?’ And so, what was normal to him was my greatest gift that Rosh Hashanah.”

 

Aaron’s father was in long-term care. There were often extended periods of time when he was confined to bed. As time passed, Aaron’s father began to deteriorate. It seemed as though each time they visited there was another new piece of apparatus attached to his body in order to assist him. Aaron was concerned about taking his two young children up to see his Dad as he deteriorated. When he finally did, he prepared them for what they would see. He was surprised at the easy way they dealt with the visits.

 

The older child, seven, and his grandfather, played a game, to see if he could guess what piece of equipment was newly attached to his body and which one had been removed. Then he tried to figure out how it worked. Then both children would cuddle up with Aaron’s Dad to watch kids’ shows on TV. Just like they always did, something very special as Aaron had chosen not to have a TV at home.

 

When Moshe’s grandchildren learned about Succos in preschool they examined a lulav and esrog. They looked at the leaves and the spine of the lulav and smelled the sweetness of the esrog and saw how fragile its “pitom” could be. The teacher had one lulav that was broken at the spine. “That’s just like my Zaidy.” Announced Menachem, Moshe’s grandson, to the teacher. “His spine doesn’t work well either so he has to sit in a wheelchair. When Moshiach comes, he’ll be able to walk.”

 

Ruth’s father was in intensive care. She agonized about whether or not to take her children up to see him. Her children were only four and two. Ruth’s father had been in the hospital for quite a while and the children were used to seeing him there. But this was intensive care, not just the hospital.

 

Ruth discussed the possibility with her father’s nurse of having the children visit.  The nurse warned her that the children might get upset seeing her father with all the tubes and machines attached to him. “But that is how they have always seen him in their short lives. Maybe not as many tubes, but he has always had some tube or another and has been in the hospital for so long.”

 

Ruth decided to take her children into the ICU for a short visit. The four-year-old wanted to know how each tube worked, what it did and how it helped. The younger child was just disappointed because there was no TV over the bed for her to watch.

 

A thunderstorm had begun, just as Miriam told her two children that their Saba had passed away. The oldest, five, got very excited. “Listen to the thunder,” he said. “The Malachim (angels) are playing the drums to welcome Saba to Shamayim!” Suddenly there was an extremely loud burst of thunder. The five-year-old began to dance around the room. “He just got there! Did you here that? He’s in Shamayim!”

 

As Miriam began to cry, her three-year-old asked her why she was crying. “Because I can’t kiss Saba anymore,” was the first explanation she could think of. “Sure you can Ema, look’” and her daughter put a kiss in her hand and threw it towards the sky. “See. That’s how you do it.”

 

You can contact me at annnovick@hotmail.com

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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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