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People, with the utmost concern and caring, tend to give advice. And to them the advice makes sense, eminent sense. The fact that they have no experience to what you may be going through is irrelevant. The fact that at the very point that you are in crisis, the last thing you want to hear is others’ unknowledgeable opinions, is also irrelevant. And so you get the insights of others, all well intentioned. One mother, who was sitting shiva for her young child, told me that the advice she was given that would help her more than anything was to learn to play bridge. Another well spouse, whose adult child has been hurt in another country, was ordered by an unknown stranger to take the phone number of a relative who lives in that country. The relative, for a mere $300 a day, would take the mother anywhere she needed to go. And though all may mean well, the one thing they all disregard is the emotional state of the person going through the trauma.
Since I began writing “The Person Behind The Chair,” I have received copies of many letters and e-mails received by well spouses. All of these letters were meant to be helpful. All were written by people who had no idea of the situation the well spouse was in. All have caused the well spouse anger and pain, and yet they do not realize it. In the next few articles, I’d like to share with you parts of these letters and explain why they are inappropriate. In doing this, I hope to make people more aware of the difference between well-meaning advice and hurtful comments.
The following are excerpts from an e-mail received by a well spouse (let’s call her Lil) from a long distance friend (Josh) who lived in another country. The well spouse’s husband (Manny) was in intensive care in the local hospital. Manny and Lil had just recently decided to move to a city closer to their children, when Manny was hospitalized. Josh, who had come to their city on business, had visited Manny for the first time in over 15 years. Shocked at Manny’s condition, Josh decided to send this e-mail. He sent it not to Lil or Manny, but to a mutual friend he had just met on his trip. He asked him to pass the letter on to Lil and Manny.
“…I have a feeling that Manny and Lil would not mind having you read this, so I’ll include several things I’d share with you both…Mannyit was a moving experience, to say the least, to be with you again…I was distressed to see you so weak, ill and disabled…I was saddened by the many changes in your appearance since we last were together…I hope that you continue to improve your respiratory function and that you receive more aggressive physiotherapy and nutrition. The ultimate hope would be that some day, the tracheotomy would be unnecessary.”
There were many parts of this paragraph I have deleted because of their extreme personal nature, even though you, the reader, don’t know Lil or Manny. I was indeed surprised that Josh felt comfortable sending this message through a third party; one he had only recently met, at that. Lil was very angry that this letter was not sent directly to her, if not by e-mail than by snail mail. She felt that Josh had no right to discuss anything about her and her husband’s state of mind or medical condition through a mutual friend. She told me that the only reason she could think of anyone doing this was to appear good. She felt that Josh was trying to impress his new friends and could care less about Manny and herself.
The letter continues….
I hope you’ll forgive my meddling, but I want to make a suggestion. I know…that your care and nutrition have been sub-optimal for months. I also know that you’ve been approved by a hospital (in your children’s city) for admission, and (your province) is willing to continue to pay for your care (there)…. What could possibly be the hesitation in transporting you to that hospital tomorrow? All this can be done, including providing professional respiratory care en route. I’ve seen it and participated in the transfer of weaker and sicker patients over a longer distance than that.
Lil was enraged and beyond tears at this point of the letter. She told me Josh was a skin doctor not a respiratory doctor. She said that her local hospital had deemed her husband unfit to travel the last two times a bed was available in the nursing home (not hospital). And so they had lost the bed. There are no such things as empty beds, just waiting for you, in any hospital or nursing home. The next time a bed became available could take months if not years. If Manny’s doctor felt it was safe for him to travel then, she would have to transport him by air ambulance, and the cost to her would be $16,000 to $19,000. In addition, the new place was going to cost her $2000 a month, and that was with insurance. She didn’t know how she’d do it financially. She wondered what she would live on after the bills were paid. “What could possibly be the hesitationin transporting you tomorrow…?” What indeed!
Lil had also exhausted herself over the last several months cooking and baking , trying to get her husband to eat, which he was refusing to do. No facility could give you adequate nutrition if you refused to eat or drink the food or the nutritional supplements. But to hear this person assume all could be done whenever they wanted, without risk or cost enraged her. To have this said to a third party reduced her to tears. She felt she now had to go to their mutual friends and explain herself, which was the last thing she had the mental or physical energy to do.
I’ll share more of the letter, next week.
I can be reached at firstname.lastname@example.org
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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.
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/let-me-tell-you-what-you-need-to-do-part-one/2006/10/11/
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