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Special Needs

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       I have often written about how important respite is for the caregiver. A break from the daily care of a chronically ill loved one is vital in order for the care to continue in a warm, loving manner. But while that break in routine is happening, it is very important that the respite worker understand the specific needs of a Jewish person. In fact it is vital for everyone who comes in contact with the chronically ill person and his/her family to have an understanding of our Halachah and tradition in order to treat the clients appropriately and with sensitivity. This requires education of the professional and volunteer caregivers. Without it, the quality of a person’s life will certainly be diminished.

 

         Jenny was Orthodox. Her children were not. When Jenny had a stroke, she lost the use of her hands and could not speak. She needed to be fed and have her basic needs attended to by another. Her daughters did their best to keep her happy and comfortable in her own home. She had 24-hour care from some “very lovely and kind” caregivers who came highly recommended. Jenny’s children never thought of informing the caregiver about kashrus, because they bought all the food, and made sure it was strictly kosher, as their mother would want. Jenny could not inform her children of problems because she could not speak.

 

         One day Jenny’s sister arrived just as she was finishing lunch. Jenny was crying and agitated. Her sister saw what the problem was immediately. The caregiver was insisting that Jenny drink a glass of milk with a meat meal. The caregiver had no idea why Jenny was so upset. She attributed the agitation to the stroke. She told Jenny’s sister that Jenny was often agitated around mealtime. When the sister explained about the separation of milk and meat, the caregiver was devastated. She had never heard of this.

 

         Martin had Multiple Sclerosis. He could not care for himself and needed to be placed in care. His mind was sound. He took part in choosing his own facility and, being Orthodox, chose one that was kosher and met his religious needs. Martin was surprised to discover that his lunch was usually a meat meal and supper, served only four hours later, was dairy. When Martin complained about this, because he observed the six hours of separation between meat and milk, the facility was shocked. It seemed no one had ever brought this up before. Some of the staff had no idea what the problem was.

 

         There was no Jewish school that could meet the many needs of a young Orthodox special needs child, whom I will call Zev. And so Zev had to go to a special needs center located in a public school. He made tremendous progress through the year. However his talk of pumpkins and gifts from Santa was extremely disturbing to his family.

 

         Making caregivers aware of our Halachah and traditions is vital if we want our elderly and ill to be comfortable in their care. A Jewish way of life may be totally foreign to those who are taking care of our loved ones. Many communities may have already addressed this issue. Others may have never thought to. One institution that is in the process of educating caregivers is the Ahavas Chesed organization of Montreal, Canada. It is holding a symposium on May 15 of this year for professionals in the public and private sectors. The objective of this symposium is to sensitize and educate workers to the unique needs of the Jewish population. It is called, “Bridging Worlds − Caring for the Orthodox Senior/Holocaust Survivor.”

 

         They are also producing two publications. One is a handbook that includes a general history, profile of the Orthodox family and lifestyle and a section on care giving. The other is a resource guidebook for care workers that provides specific do’s and don’ts of an Orthodox home in daily life and around the calendar year in diverse situations. It is the hope of Ahavas Chesed that these educational items will then be used at agencies and institutions for ongoing staff training.

 

         As a well spouse of many years I am eager to see these booklets. I can think of many unfortunate situations that could have been avoided if only the caregiver had had more knowledge about our way of life and unique needs. It is my understanding that topics will include everything from kashrus to modesty when bathing someone and will cover a tremendous amount of vital information. Though written specifically for the senior and ill population, I hope many of the ideas could also be used when dealing with Jewish and Orthodox people, no matter what their age.

 

         For more information on the symposium or the booklets you can contact cpolter@ahavaschesed.ca

 

         You can reach 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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