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September 23, 2014 / 28 Elul, 5774
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A Tale Of Two Cities

   In one week I had the privilege of speaking to two very different well-spouse support groups. One group was in a big city with a large religious population and a well-organized Bikur Cholim whose volunteers took care of those in the community who were sick. The other was in a much smaller city with few religious Jews and no Bikur Cholim or any other Jewish religious community support. The topic we were discussing was what community supports a family needed when one of its members was hospitalized.  



    In the larger city, a well spouse told me that when her husband had been in a rehabilitation hospital that had no kosher food available to its patients, there were volunteers in the community who made meals and others volunteers who picked up these meals and delivered them to the hospital. Not only did they send a meal for the husband who was hospitalized, but also to her delight and amazement she discovered they sent two meals, so that she too would have a kosher meal.

 

     She told the group how wonderful it was not to have to worry about bringing food for her husband every day. “Of course I could have picked something up at the kosher restaurant, but now I didn’t have to make that extra stop on my way to the hospital. But the best part was that I didn’t have to think about food at all. It was one less thing on my mind. When you’re so worried about everything, one less thing to think about makes such a difference to your ability to cope. Well it really did for me!”  


    As we discussed the issue of hospital specific needs, many in the group shared how the Bikur Cholim’s policy of sending food for two ensured that the well spouse stayed healthy as well. Many in the support group commented that when they were dealing with a spouse’s hospital stay, their own meals often consisted of a bowl of cereal or nothing.

 

    And, if there were children or elderly parents at home − healthful meals were few and far between. No one was surprised that colds and worse often accompanied the “well” family of a family member’s extended stay in the hospital. 

 

      However, it was not the physical wellbeing alone that the group appreciated. Most of the well spouses talked about what it felt like to be thought of, cared for, to have someone or some organization like Bikur Cholim lend support when you are in crisis.

 

    They told me it simply helped them keep going. It helped them cope better, deal with their spouses and family more positively and, in general, helped them get through the crisis more intact. It is amazing what two bowls of hot soup, a salad and some crackers delivered to a hospital can do.  


     A few days later I met the other group. Their city had no support system in place and no kosher restaurants.  Few of the well spouses in this group had ever received that kind of big city support when their spouses where placed in a hospital. Their experience was just the opposite. There was the constant difficulty of providing kosher food for their sick spouses, which they would have to prepare themselves − three times a day − for the length of the convalescence, which could be months.

 

     Then they would have to cope with the emotional fatigue that accompanies feelings of being alone and abandoned – the constant companion of the well spouse – invisibility. One woman related what happened when someone had finally thought to bring a treat for her husband to the hospital. When her husband refused it, they just took it home, never even thinking to offer it to her or her children, though his family was standing right there.  


     As we discussed this, many of the well spouses wondered if the size of the community was the cause. Larger cities have more of a pool of volunteers to draw from and so it is easier to fill these needs. In this city, there were a limited number of people who kept kosher. However, at that point, one group member questioned if the need was not in proportion to the community. 

 

    “How many people do we have in the hospital at one time in this community that eat kosher? One or two at most. Do we really need a whole organization to meet this need? Someone’s dinner leftovers could make a good supper for someone hospitalized, and may even be enough for the visiting spouse.  A large pot of soup poured into individual containers and frozen could be defrosted to provide lunches if sent with crackers and fruit.”  


     As the group talked, they began to organize themselves.  They decided that all they needed was seven families that were willing to adopt a person or two in the hospital one day a week (when there was someone admitted, which really wasn’t that often). This family would just add enough for two more meals to their supper menu and take that day to visit the ill person and deliver the meals. Someone else offered to always have a variety of soups in her freezer in individual containers that could be delivered for lunch. In this way the sick person was ensured a visit and kosher meals every day, and the physical and emotional need of the well spouse would be met as well. 


     It is not the size of the group but the desire to help that makes the difference. The impact of a simple act of chesed in a time of need, the consequences of one person’s willingness to help, may do more good than you ever imagined.

 


You can contact 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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