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October 1, 2014 / 7 Tishri, 5775
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Testimonials – A Husband Speaks

Recognition of well spouses has come a long way since I first began writing about them. But, this unpaid position still remains one of the most unrecognized, difficult and thankless of jobs. Today, health organizations have begun to realize that caregivers of the chronically ill are vital to the health of the ill person and his/her ability to cope with the illness. Many corporations and umbrella health groups have recently begun giving awards of recognition to caregivers.


This has gone a long way toward establishing recognition of a group that is usually invisible. In my attempt to share insights into lives of well spouses, I’d like to share a few of these nominations with you. The family members who see the sacrifice and hardship the caregiver has gone through wrote these nominations. The people who made the nominations are also extraordinary, in that they were able to come out of their own situation and see the sacrifice of the caregivers with whom they live.


A chronically ill husband wrote this when nominating his wife for a caregiver award: “To set the stage, I am her husband and…. was diagnosed with MS (13 years ago). She was and is my primary caregiver. The fallout of MS on the family is heavy indeed. My wife was faced with a husband in crisis and a young family in great need. She picked up the pieces. She got me through those early days with love and care. She did it in such a way though, that did not allow me to hide or escape into another world. She prodded me to remain a responsible, functioning person. She kept the children going while never allowing me to withdraw as a husband.


“More than surviving, she has helped me to grow and mature. My MS, a painful and debilitating process, has been made an opportunity for life enrichment. I am alive (in every sense of the word) because of her care and strength. My family has survived the process, scarred but intact, thanks to her devotion and wisdom.


“The story, however, does not end there. Like many MS spouses, she has also faced fears, pain, sacrifice and disappointment. It takes a long time for MS-ers to be open to the pain around them, when theirs is intense. The well spouse, though, suffers as much, but often invisibly. Society has expectations but little understanding for the MS partner. (My wife) had to deal with her own losses, made all the more extensive because of her commitment to keep her marriage and family on an even keel, without support from outside.


“Her solitude taught her much, and I am in awe of her survival. She taught me about this solitude, and I owe her then for the gift of learning that I could enrich my life and love by caring for her in return. Teaching me about her needs gave me a key to overcoming a devastating side of physical disability.


“Saving a life is saving a world. (My wife) has nurtured and saved many worlds while she, herself, engaged in the struggle with MS (no less hers because it resides in my body).


“In her work…and in her involvement in community groups, and in our family life she exhibits and models loving kindness for others and for myself.


“I thank you for your considerate help in pursuing appropriate recognition for this woman of valor.”


I found this particular nomination unusual, in how the chronically ill husband is able to come out of himself and see the difficulties and pain his wife is going through. Perhaps it is that insight and willingness to give that has helped this couple survive while others fail. In this case, so it seems, the caregiver also has a caregiver.


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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/testimonials-a-husband-speaks/2006/05/24/

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