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September 23, 2014 / 28 Elul, 5774
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Understanding The Caregiver Of The Chronically Ill: The Person Behind The Chair

Let’s paint a picture with your mind. Picture a couple. The wife is standing beside her husband. Lets add four children, say three, five, seven and an infant. Paint a beautiful summer day. The birds are singing, the flowers are out and the grass is lush and green. The family is taking a walk. The three year old is balancing on his new tricycle. The infant is asleep in a stroller. The five and seven year olds are kicking a soccer ball as they walk along. The family stops to sit under a tree. The infant has fallen asleep.

The toddler gets out off the tricycle and begins to play with his truck. The children are thirsty. The baby begins to fuss in her sleep and probably needs a diaper change. The toddler probably needs one as well. As the older boys continue to play soccer, the distance between them and their parents becomes longer and longer until the parents notice they are almost out of sight. The parents call to them to return, but they cannot be heard.

In your mental picture, who is going to run after the boys? Who is pushing the stroller? Who is helping the tricycle up hill? Who is going back to the car to get the drinks or to a refreshment stand to buy them? Who is changing the diapers? Who is watching the toddler and keeping him entertained? Who will care for the infant should she awaken?

Now conjure up the same picture in your mind. This time, however, put the man in a wheelchair. He has recently been diagnosed with a chronic illness. The setting is the same. The grass is still lush and the flowers blooming. The boys are still playing soccer and wandering off as they play. The toddler is still playing with his truck or is on his tricycle. The baby is fussing in her sleep. But, who is pushing the stroller? Who is pushing the tricycle up hill? Who is pushing the wheelchair? Can the wife push the wheelchair and the stroller and keep the tricycle going in a straight line? Who is going to run after the boys to insist they play closer to the parents for safety sake?

The father cannot go. He either cannot push himself that far or if he can, it may take much too long to reach the children. If the mother goes, who will watch the sleeping baby? Who will tend to her if she cries? The father cannot reach her from his chair. His hands are not strong enough to pick her up and hold her on his lap and make sure she doesn’t fall down from his chair. Who will watch the toddler? What if he decides just then to exert his independence and wander off? Who will make sure he stays put? Who will go to the car to get the drinks?

There is only one solution. The wife, carrying the toddler, must run after the boys. Halfway there, she hears her baby crying and wonders if she should go back in order to tend to the baby or run after her boys. Meanwhile, the toddler is complaining about his confinement and wants “down”. Once the boys are back within sight, she’s off to the car to get the drinks. She still has the willful, unpredictable toddler in hand. She has no other choice. She has settled the baby and prays she will not wake again until she returns. She hopes the boys have not let their game get out of hand. She prays that all this normalcy has not put her husband in a bad mood because of his disability and led to an inability to parent effectively.

She hopes she will not return to hearing her husband screaming at the children in an attempt to deal with that which he no longer is capable of. As she lugs the heavy picnic basket of drinks in one hand and the squirming toddler in the other, she wishes it was always winter so that outings to the park never happen. Then again, it’s hard pushing the wheelchair in the snow. Harder than the carriage or the stroller. It’s not really the season. She knows this. It is the disability that has made any attempt at living a normal family life impossible. ◙

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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.

Printed from: http://www.jewishpress.com/sections/magazine/understanding-the-caregiver-of-the-chronically-ill-the-person-behind-the-chair/2004/11/17/

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