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Being A Well Spouse Is An Emotional Paradox

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         As the years go by, and your spouse gets worse, and your life gets harder, well spouses often live with emotional paradoxes. Craving a normal life, they want the illness to go away. Acutely aware that it never will, they constantly walk the tightrope. On one side is the love for their spouse. On the other side is exhaustion, loneliness and a desire for a life without illness in it. Both sides have a tremendous pull on the well spouse’s desires. Both are in conflict with each other.

 

         These conflicting emotions can often result in tremendous guilt- guilt that results either when the illness wins and when it does not. It may be very difficult for anyone who hasn’t dealt with chronic illness and its fallout year after year to even begin to understand this emotional paradox. It may even be shocking to some. But for those who are well spouses, the conflicting emotions and the guilt that tags along with having those feelings are an everyday occurrence.

 

         I recently saw a poem in the Spring/Summer 2007 edition of Mainstay, the newsletter of the Well Spouse Association. Rebecca Otterness, a well spouse, wrote it. I thought it captured the ambivalence and conflict that prolonged illness forces on well spouses and their families. Apparently, judging from the responses to the poem, so did many other well spouses.

 

A Caregiver’s Paradox

 

         Crying


         He is in a Nursing Home now, I’m crying


         Crying because he got sick pneumonia


         Crying because he got well


         Crying because I love him so much and someone else is taking care of him


         Crying because I am so tired.


         I will cry if he dies, and I am crying because he didn’t;


         I am crying because he has a very poor quality of life; but do we need more in life than to be loved by our spouse and by our G-d?


         Crying because it’s been so long, and love has not been enough to make him well.


         Crying because I can’t let him have pneumonia without being treated, but feeling social pressure not to treat it.


         Crying because getting well from pneumonia means he will live longer so his MS can get even worse.


         Crying because he is in the nursing home and crying because he will come home.


         Crying because my identity is so caught up in his, in being a caregiver and his wife. How will I know who I am when I cannot care for him any more?


         And crying because I don’t think I can ever love anybody again it hurts too much.

 

         It needs to be understood that the desire expressed above is not against the ill spouse. Most well spouses care and love their partners deeply. They do not want to lose them. What is expressed is the tremendous need to dispose of the life of drudgery, the life of anguish, the life of pain. A well spouse shares his partner’s pain. He will feel it as intensely as if it was his own. And, his own pain is added to his spouse’s pain; his own loss added to his spouse’s loss. For a well spouse, there is only one way out of the situation- leaving, his or yours, through death, divorce or desertion. There is no other way. And each solution brings with it tremendous feelings of guilt. Just thinking of having a normal life involves thinking of these choices, and with those thoughts, tremendous feelings of guilt.

 

         Once, at a well spouse conference, I heard a talk by a rabbi who was also a caregiver for his chronically ill wife. He spoke about Mrs. Eyov, (Mrs. Job, in The Book of Job). She was, he suggested, the first well spouse. She has suffered along with her husband, as all well spouses do. His losses were, after all, her losses too. She has no community support, or people who understand what she is going through. She has no one to talk to who was also a well spouse. She was totally alone with her thoughts.

 

         The rabbi wondered if one dimension of the “Mrs. Job” figure that stands in for many of us, is that of a well spouse whose only way out is in her husband’s hands, should G-d want it so. There is only one sentence attributed to her. She asks her husband to curse G-d and die. Could it be possible that among the many, many, commentaries we learn about Mrs. Job, there’s one that also addresses the very human emotion of simply wanting out? With a lack of support, she goes from thoughts of changing her situation to actually demanding it, as this may have been the only way she perceived to be able to relieve both her pain and his.

 

         Perhaps the difference between the emotions reflected in the poem and those of “Mrs. Job” is that one person found a way to channel and direct the raw emotions while not acting on them, leaving her faith and trust in life and in G-d’s decision.

 

         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.

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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.

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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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