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July 28, 2014 / 1 Av, 5774
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The Well Spouse’s Need To Be Cared For

        Most well spouses live their years as care givers without any one giving a care about them. They are rarely asked how they are or anything else about themselves. They are bombarded with advice, criticism and questions about their partners, but rarely, if ever, about themselves. If they take some respite time, they are often ostracized by their friends, community, and, in some cases, even their family. And so they forget over time what it is liked to be cared for in little ways. I received several letters that told how shocked people were when finally someone showed them some caring. In many cases it was just a sentence, but it meant the world to them.

 

         Louise, though caring for her well spouse, was caring for her daughter’s dog Lucy when she was away at university. “A larger mutt bit Lucy, and I rushed her to the vet who was not there at the time. The receptionist telephoned him to ask what they should do about the bite. He asked to speak to me. I thought he was going to give me instructions on how to look after the dog. Instead he wanted to know if I was alright! He wasn’t concerned about the dog, but about me! Wow! He saw me as the well care giver and felt (and wanted me to know) I was important too!”

 

         “When I was first divorced (from my chronically ill husband), I attended a Shabbat service at which the rabbi made me feel that only an intact family counted and a divorced home (especially that of a former well spouse) was very wrong. Consequently, I stopped going to synagogue. I was very hurt, but didn’t feel strong enough to meet with the rabbi to take issue (with him). About a month after not attending shul, I received a phone call from the chairperson of the membership committee. She wanted to know why I wasn’t attending. I explained that I didn’t feel welcome.”

 

         It turned out that she too was a well spouse who understood the history of not being cared about and not being made to feel welcome. “We chatted for over an hour and both of us cried” at having found the caring and understanding in each other. The writer goes on to say that not only did she go back to the shul but the next year “began a singles’ group which met for brunch on Sundays.” This group was for any single, no matter how they got to be single. Singles, widows and divorcees were all welcome. As time went on, they became a surrogate family. For many of them, especially the writer, it was the group that provided the caring that she had not received for so long.

 

         A well spouse support group was dealing with the feeling of not being cared about. One of the things mentioned was that their spouses never got them birthday gifts any more. One person’s husband, who was though quite ill, would remember it was her birthday and tell her to go buy herself a gift…from him. “It wasn’t the same,” she said. “In some ways it only made me feel even more ignored and not cared for.” The group decided that they would get each other flowers for their birthdays. “It was wonderful to get a present again. Even though you knew it was coming. It just made you feel cared about, at least on this special day.”

 

         In the Winter (#84) edition of Mainstay, the newsletter of The Well Spouse Association, an ill spouse, Michael Robinson, writes of his wife’s experiences with lack of caring. “One of the things that is most bothersome to me is that very few people ever ask my wife how she is doing…it is as if she is invisible even in the doctor’s office and when the reason for the visit is that she is sick, he wants to know how I am doing before asking her what brought her to the office.”

 

         When, as in the first story, the words in a mere sentence like, “Are you alright?” can mean so much to a caregiver, think what is said in a paragraph would do. If a mere sentence makes them cry for joy, imagine how an invitation for coffee or a meal might make them feel. What about a birthday gift or flowers for Shabbat or for no reason at all. What about just asking how they are, and not making reference to their spouse − just once. These are all little things we can do to show we care. Doing them would probably give hours, if not days or weeks, of feeling great joy for someone who has been in starvation mode for words and acts of caring for so very long.

 

         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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