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Let Me Tell You What You Need To Do (Part Two)


Last week I began sharing a well-intentioned letter that was e-mailed to a well spouse and her hospitalized husband. This letter was not sent directly to them, but through a mutual friend. My purpose in sharing the letter with you was to illustrate how well intentioned advice, especially from people who think they are aware of the situation, but are not, often causes pain and anger. As I continue sharing actual letters, it is my hope that we think carefully about the advice we are so willing to give to assist others in their time of pain.


 


Last week’s letter was a detailed list of suggestions for Manny and Lil (not their actual names) from their friend (whom I call Josh) of exactly what to do about Manny’s hospital care. Josh told them how and why Manny needed to be moved immediately to be closer to their children. Josh complained about Manny’s care and nutrition (making Lil feel responsible, as she was providing the food) and assured them that the exorbitant expenses they anticipated, would cost them nothing. I will continue the letter, as Josh focuses on what he perceives are Lil’s “needs”.


 


“I understand that Lil can’t get herself to (make the move) so quickly, but your transfer and better care would only be a relief and will ease her burden, so she can make leisurely arrangements…until she can join you.”


 


Lil described for me, once she got a placement for her husband and began paying the $2,000 per month on top of the $16,000 plus for the air ambulance to transport him, what her leisurely arrangements would be. First, she would have to pack up and downsize their home of over 20 years. This would include closing her husband’s office at work and dealing with all the stuff there that, at last count, came to over 100 cartons. Once cleaned out, she would then have to put her house on the market and cope with all the stress of selling the house.


 


After selling the house, she would have to find a place to live in a new city, one that was also wheelchair accessible for her husband, when he could visit. She wasn’t sure what she could afford, as the new city had a much higher cost of living. At the same time, she was worried about overburdening her children with any extra care and visits her husband might need and the demands he was sure to make once he arrived in their city. Somewhere amongst all this emotional upheaval, she’d have to say goodbye to friends of 20 years, who had been her help and support throughout Manny’s illness and leave the city with which she was familiar. Lil was also concerned about making new friends, finding new doctors for herself and finding new employment to offset the higher cost of living. Lil told me she had a little difficulty in “finding” the “relief to her burden” and was only moving because it would be better for her husband. She wondered about the “leisurely arrangements” she would be making, and when, in all this leisure, she’d have time for the nervous breakdown that was surely threatening.


 


Josh may have only been expressing his concern, but Lil wondered where his concern had been for 15 years, when Manny hadn’t even received a phone call. Abandoning your friend in his time of need tends to put any advice you may give later in a negative light. Further, Lil wondered why Josh hadn’t bothered to check his facts. Every idea of his was based on incorrect information. Beds were not readily available, none of the cost was covered by anything, and Manny wasn’t well enough to make the trip right now. Perhaps Josh had based his “knowledge” on what Manny had said. Manny, in the intensive care unit of the hospital and heavily drugged, may have been a bit confused. Perhaps Josh should have checked his information with the person responsible for everything – that would have been Lil!


 


It is important that one never discusses a personal topic through a third party without asking the permission of those involved. Let’s assume Josh did not have Manny’s e-mail address. Regular mail still works. Even if Josh wanted to bypass Lil, he could easily have gotten the address of the hospital and sent the letter directly to Manny. Perhaps it was just more convenient for Josh to include the letter in the note he was writing to the new friend, anyway. But Josh’s convenience should not be the issue when he is dealing with such a sensitive topic. Josh had no right to assume that Manny “would not mind having you read this, so I’ll include several things I want to share with you both.” Further, nowhere does he assume Lil might have concerns or objections. She isn’t even mentioned in the letter until Josh gets around to “advising” her on how to proceed. After all, she’s only the caregiver, invisible to the outside world that only sees the chronically ill. People with advice often forget that illness lives with a family, not just an individual. The advice you give needs to consider everyone in the family unit – particularly the caregiver. She is, after all, the one to put it all in place “at her leisure.”


 


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.

Printed from: http://www.jewishpress.com/sections/magazine/let-me-tell-you-what-you-need-to-do-part-two/2006/10/18/

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