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March 30, 2015 / 10 Nisan, 5775
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We Can’t Always Emulate Those Who Appear Perfect

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I recently attended a conference on a particular type of chronic illness that I knew little about. The first part of the conference was informative and full of helpful ideas for caregivers. One particular lecture was given by an expert in the field but one who had no personal experience with the disease, other than professionally working with families wherein someone suffered from it.

 

She made no pretense of having the emotional insight on what it is like to be a caregiver. Instead, she gave facts, statistics and ideas of what she had seen worked well in the situation. Her talk was outstanding and people left with many ideas to put in place and a professional contact that really knew what she was talking about.

 

Another lecture at the conference dealt with being a caregiver. It was a remarkable success story of an amazing man who cared for his wife in his home until her death. Even to the point of waking every two hours to turn her position to avoid pressure sores. He talked about all the positive and wonderfully creative ways he had developed of dealing with the situation and how his whole family had benefited from the experience.

 

His wife had passed on several years before. Perhaps the positive experience that he portrayed is how he recalls what he went through, or the parts he thought would be most beneficial to share. But what I saw and heard in the audience were people sitting at the end of their rope feeling guilty for not being able to do what this man had done. I saw caregivers who felt less than perfect, because they could no longer handle the situation in their home; failures, because their children didn’t find care giving an uplifting experience, but a torturous, awful way to live.

 

It wasn’t until someone asked the speaker, “Then you’re saying we should never consider a care facility placement? That it is wrong?” It was only then, that I think the speaker came down to the level of the group. He explained that that was the choice he had made, but in retrospect, it may have been the wrong choice for him and his family. I was impressed with his honesty and his openness in front of the group. I also felt that it was just that one comment that connected him to his audience.

 

Success stories are wonderful, but they are not uplifting to those who are in the same situations and are experiencing anything but success. Many caregivers are in the process of sorting through very negative feelings about their situation. These feelings are very real and they have a need for others’ acknowledgment and empathy if they are to rise above them.

 

I feel caregivers need to hear that other people have felt what they feel now, so they can identify and accept what is going on in their lives. If they are given a “guilt trip” and made to think that what they are feeling is wrong, or that they are not a good person for feeling this way, or that they are the only one in this situation who feels negatively, they will never be able to deal with themselves or the person they are caring for.

 

That is often where support groups come in. Bound by common feelings and strict rules of confidentiality, people can express their pain and be understood by another who has been there. It is easier to emulate someone who shares your emotions instead of someone you see as perfect. I admit that attending a lecture cannot be equated with participating in a support group, and uplifting stories of brave, self-sacrifice are wonderful to hear. There are parts of them, however, that we may all take away and try to put in place in our own home. They have their time and place. But, if the goal is to support and help those going through what you have been through, it is also important to share the frustrations, failures and negative emotions that are felt.

 

In that way, people can more easily identify with you and feel that they are capable of doing some of the things you did. If we cannot identify with a person, if we think they are more brave, more resilient, wiser and kinder than we can ever be, we will find little in their story that we feel we can put into effect in our lives. Few of us can emulate perfection. Fewer will even try.

 

If you find yourself listening to someone (whether at a lecture or in conversation) who seems to have handled the same situation you are in − with a perfection that has you feeling negatively about yourself – simply ask questions like, “did you ever feel lost or angry or have negative feelings when you were care giving?” You may be surprised to discover that everyone has felt, for a time, exactly how you are feeling. The frustrations of care giving are there for us all. Even for the people we initially see as “perfect.”

 

You can reach 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.

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/we-cant-always-emulate-those-who-appear-perfect/2008/04/02/

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