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November 21, 2014 / 28 Heshvan, 5775
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A Response To Dr. G. (Part III)

            For the last several weeks I have been sharing with you the perspectives of a doctor whose point of view made me revisit the reality of the caregiver’s role. I want to thank this doctor for his candor and perspective. I believe what he wrote will help us all be more efficient in our care giving as we become more aware of the perspective and boundaries from his side of the stethoscope.

 

            After years of being our partner’s expected caregiver, most well spouses don’t see that there may be alternatives to their being the medical proxy.  However, it may be possible to appoint someone else to gather all the necessary medical information, sift through the alternatives, deal with the medical system and make appropriate medical decisions for our loved ones.

 

            Last week I discussed and elaborated on Dr. G.’s comments on this topic.  Having the time to update him/herself on the current medical information while being fully aware of the family situation, would allow this third party to then present the information, as well as informed options, to the couple and along with the medical professionals help decide on a treatment plan that works for everyone. Being the Health Care Proxy but also part of the family team, while not being directly involved with the 24/7 responsibilities of care giving, he/she could be in a better psychological state of mind to sift through the information and then help everyone make an informed decision for the ill spouse. But how do we go about finding this person?

 

            Recently it occurred to me that as we are living longer, there is a wealth of older, retired professional people (doctors, nurses, professors, physiotherapists, pharmacists, social workers, occupational therapists to name just a few) who have a vast array of knowledge on all aspects of the medical system. They may also have more time on their hands and would love the stimulation and the chesed of assisting in just this type of situation. Volunteer or paid, this is a resource worth looking at. Whether they take on the role of The Proxy or just gather the information we need and become part of our health care team, they would provide invaluable assistance to the couple in crisis. But the role of this person must be made clear by the couple. He/she must understand the religious desires of the ill spouse and know what rabbinical authority to call for any needed clarification. He/she must have an awareness of the limitations of the family, financially and emotionally, and must know what being a well spouse entails.

 

            If a retired professional cannot be found, perhaps a competent relative or caring friend might be willing to take on the role. Again, it must be someone who understands all the aspects of this undertaking. But whether it is a friend, relative or professional, the well spouse must still become acutely aware of how to react on the spot in a crisis, as Dr. G. states, when there is no time to call for information. But this too is something the third party can help with by getting the information and then teaching it to the well and ill spouse.

 

            Also discussed previously was the competence or lack of competence of the Health Care Proxy. Family, even spouses, may not always be the best choice. Emotionally overburdened, family members may possibly rely too heavily on the opinions of health professionals whose perspective on what is “quality of life” may be far different than that of the ill spouse. Sometimes their suggestions in a crisis can reflect a point of view that is counter to the wishes of the family and the patient, but be seen by the overwhelmed family as the only option. An objective, non-related Proxy may be able to explore alternatives.

 

            The Proxy must also keep him/herself current with the wishes of the patient. It is important that the person selected to be the Health Care Proxy not only understand the needs and wishes of the ill spouse but also realize that once a crisis occurs those desires may change. Discussion of what to do in a crisis needs to be revisited often. A Halachic Living Will, that discusses what your desires might be in specific life threatening situations, can help guide and give direction to The Proxy and the family.

 

            It is vital that the ill spouse, or in some cases the ill adult child, make it clear to the medical system that he wants his information shared with his family.  Otherwise, as Dr. G. points out, “if the patient is alert, unless the patient gives permission privacy rules limit very much what you can be told and what can be discussed with you.” even if you are the one living with and implementing the decisions.

 

            I want to again thank Dr. G. for his letter and encourage everyone whether they need it now or not, to make sure they have the appropriate legal documents that work for their situation.


 


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/a-response-to-dr-g-part-iii/2009/09/09/

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