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
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.
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