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December 20, 2014 / 28 Kislev, 5775
 
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Testimonials – An Acceptance Speech


For the last two weeks I have tried to give you a different perspective of a caregiver. The first was through the eyes of an ill spouse as he spoke of his wife who was his caregiver. The second was through the eyes of a daughter growing up with a chronically ill father. She related how she perceived her mother through her formative years. Both shared their feelings and insights through nominations for a caregiver award. This last testimonial is by a well spouse herself, as she accepts a care-giving award.


She said, “Before my surgery, I walked through the hospital and ran into two clergymen I knew. Clergymen, pastors. They stopped me and asked if my husband was in the hospital again. ‘No’ I said. ‘ I am here for me.’ ‘Oh. Thank G-d!’ they said.


Invisible.


“A family of four attended Sabbath services at the same well-populated house of worship for many weeks. One Sabbath, the wheelchair bound father/husband decided not to go with the family. The wife and children attended without him. They were welcome as new visitors.


Invisible.


“Recently my husband and I attended a celebration. The host greeted us at the door. He took my husband’s coat and left me standing there with mine.


Invisible.


“Well spouses, the husbands and wives of the chronically ill, are a large group. Conservative estimates place their number at over ten-million. That is an awfully large number of people to be invisible.


“Well spouses, it seems, have much in common. This makes them a unique and defined group. They have similar experiences and concerns; they exhibit common symptoms and fears. They share broken dreams and pain. They deal with the same worries and problems. Most of all they share a non-existence in relation to the world at large.


“I am grateful to the society for my nomination for this award because it gives recognition to spouses. It says, we do exist. It helps to take away the sense of invisibility which surrounds us. We are a group in great need of support, and before one can get support, one’s existence must be acknowledged.


“When I received notice of my nomination for this award, I had very mixed feelings. I am not a ‘traditional’ caregiver. I believe in making my spouse as independent as is physically possible. I also aim to have our family function as normally (whatever we can understand that to mean) as possible. My goal is for us to be able to learn and rely on each other. We must be able to depend on and demand access to each other’s strengths.


“Caregivers, as individuals, face difficult choices. Some of us stay in a marriage and do all we can for our spouse’s comfort and assistance. Some choose to stay and do a limited amount or as little as is absolutely necessary, feeling that the best course is fostering independence. Some choose to leave their spouses, feeling a need to do so based on their own unique circumstances.


Some, at one point or another, choose a care facility as their way of coping with the situation.


“Whatever the choice, it is taken with immense caring, pain, love and concern for the welfare of all the loved ones involved. The choices are not easily made. They are also not for anyone else to judge.


“The …Society has considered people for this award who have chosen different paths. The choice of those considered indicates and reinforces a non-judgmental attitude towards our very complex and onerous choices. For that I am most grateful.


“I’d also like to thank the society for helping give birth to our well-spouse support group. The understanding, warm, caring and sensitive support of my fellow caregivers have helped me through many difficult and trying times.


“Lastly, I want to thank my husband who has pushed himself the extra mile and learned over our 27 years together to be my caregiver.”


Several things struck me by this powerful speech. I felt I was listening to a woman who had been judged and damned by those around her who knew nothing of her life or experiences. She confirmed this when I spoke to her. She felt that if she could get one message across it would be not to judge that which you do not understand. Whether caregivers stay or leave or do something in the middle, no one has a right to judge them. What they need is support for however they decide to cope with this challenge they face. Support and help, not judgement and invisibility.

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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/testimonials-an-acceptance-speech/2006/06/07/

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