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A hurricane of mixed emotions accompanies the death of the chronically ill. Just as with any other spouse, there is mourning loneliness, sadness and pain. But along with your emotions of grief, there is a sense of relief for your spouse, who will no longer suffer in the way he has for years. His pain is gone. He is free of the limitations forced on him by his illness. And with these emotions, comes a lingering sense of guilt for feeling that relief.
This guilt is compounded by the fact that you, as a well spouse, suddenly have far less to do. Your care-giving tasks no longer exist. You get to sleep more, have less stress and more time for yourself. This too, comes with a feeling of guilt because your spouse’s death is directly responsible for your having time for self-care and, therefore, your own better health. When people comment on how well you look or sound or how well you are doing shortly after your spouse’s death, to your ears, it almost sounds like an accusation. After years of care-giving, you often don’t feel entitled to do for yourself. When people directly relate your well-being to the death of your spouse, it is emotionally devastating.
Evita’s mother was a well spouse. We’ll call her Joyce. When Evita’s dad passed on, Joyce sat shiva at Evita’s home. For the first time in years, Joyce could sleep through the night without checking to make sure her husband was breathing well or that his oxygen was still working or that he wasn’t calling out in pain. Though her sense of loss was great, she was able to care for herself and get more sleep for the first time in more years than she could remember. She was shocked to overhear her daughter talk about her on the phone; telling people who asked how she was, that she looked better now that her husband was dead, than she had in years.
Israel always enjoyed traveling. He loved to see far-off places and visit friends who had settled in different cities. But as Israel’s wife’s illness became worse, traveling became impossible. It had been years since he had been on a plane or, in fact, away from home for more then a few hours. He found himself lonely after his wife’s death and decided to visit an old friend. He was looking forward to the visit as well as the warmer weather he would encounter. But he rethought the whole traveling idea when people said, “How nice that you’re getting away from our cold whether for a bit. Too bad it couldn’t have been sooner so your wife could have gone with you. She would have loved to take a trip like this.”
Avigayil decided to attend a family wedding. It had only been three months since her chronically ill husband had passed away. She was excited to see the friends and relatives she hadn’t seen in years and rejoice with the bride, whom she loved like a daughter. Her husband’s illness had made it difficult for them to travel and almost impossible for her to leave him. And so, now that she was able to attend the wedding, she decided to go. She was having a wonderful time at the wedding until friends and family started to compliment her. “I’m surprised at how good you look, considering how recently you lost your husband,” said one friend. “I’m so glad you’re here.” said another; “I didn’t think you’d feel like coming.” Avigayil told me that the compliments would have made her feel great if they hadn’t all had that additional comment relating to her husband. But, because they did, she began to feel awkward at the wedding. She felt that maybe she shouldn’t feel quit this good or enjoy herself quite so much. The compliments seemed to turn into accusations. At least, that’s how they made her feel.
Although all these remarks were meant as compliments and niceties, the results were anything but. It is so important to be sensitive to a person’s feelings after the bereavement of a spouse. Simply saying, “I’m so glad you’re taking care of yourself,” or “I’m happy to see that you look so well,” or “I’m glad you’re having such a good time.” or “I’m so glad you’re able to travel.” are positive, reinforcing statements that are appropriate any time or place. Saying, whether directly or by innuendo, how death enabled that person to take better care of her/himself is not. The first is a compliment, the second (though it may be true) causes pain.
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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.
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.
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.
Printed from: http://www.jewishpress.com/sections/magazine/when-compliments-hurt/2006/02/08/
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