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The Need To Acknowledge Death: An Adult Child’s Perspective


(Names Changed)


 


I met an adult child, whose father had been chronically ill from the time she was three years old. She had no recollection of her father ever walking without the assistance of a cane and later crutches and a wheelchair. Yet the family picture album proved otherwise. But she could not conjure up any other picture but one of a disabled father in her mind. That was how she remembered him. Some say that memory is really a composite of feelings and actuality. A disabled Dad was her mental memory – her only memory of her father.

 

She told me that her Dad, in his last years was in and out of the hospital. He always defied the doctors’ predictions of it being “the end”. In fact, she remember so many times that the doctors called the family in to say their goodbyes, only to have her father rally and come back to the person he had been before the crisis. Well, not exactly what he had been. Each crisis took away a bit more, each crisis left him a bit weaker, a bit more dependent, a bit less of his former self. And each rally left him more tired. Tired of the illness and tired of having to fight for every degree of normalcy.

 

She told me that the last time they were called in they expected him to defy the doctors, as he always did. And he didn’t disappoint them. He went from unresponsive to joking in four days. And they knew he had come back to be with them again. But, this time was just a bit different. Or, maybe it was just her intuition. There was something in the way he sent them home after their round-the-clock vigil of four days. Something in the way he said goodbye and lingered over his words of love and thankfulness to them for being there that she found different and disturbing. At the time she couldn’t put her finger on it. Perhaps it was the way he sent them home, saying he was so very tired.

 

She had lingered. Maybe knowing intuitively what he was really saying, that he was tired of fighting the illness. She didn’t want to leave his side, even though the doctors said he was out of danger. She reminded him that she would be there in the morning to daven with him. She told me she woke in the middle of the night and had the strongest urge to go back to the hospital and make sure he was fighting hard to get back to himself, but she shrugged it off, feeling foolish. And later, the hospital called, and he was gone. She wondered if he had known the night before and had chosen, in his own way, to say goodbye, goodbye forever.


 


She told me she takes comfort when she reads about our avos who knew when it was their time and used it to pass on the legacy to their children and give them a beracha. Just as Yaakov blessed the tribes and Moshe prepared Joshua to takes his place. Just as each of our children takes our place as the family leader when we pass and desperately need to have our blessing and words of wisdom to help them successfully pass on our legacy to their children.

 

She wonders if her father was more realistic than she and her family had been. Perhaps knowing it was his time, he used his final contact with his children in a way that gave him comfort. She wonders if she could have helped him more, had she realized what he was doing. She could have said her good-byes as well, instead of talking about tomorrow and the future and perhaps not allowing him to have his final say openly, if that was what he wanted to do.

 

She wanted more time with him, she did not want to let him go and so she felt that she fought within her mind, everything her instinct was trying to tell her. She feels she was too involved in her own sense of loss to hear what he was trying to say, too involved with her fear of being fatherless to help him and give him permission to talk openly. She wished she had allowed him to speak about his feelings about leaving them, and she wonders what he would have said. What would he have told her; what legacy would he have he wanted her to have? But that is lost forever.

 

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.

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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