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October 1, 2014 / 7 Tishri, 5775
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Long Distance Caregivers

        The lure of warm weather in winter has many of us who are retired going south for the winter. Some of us have relocated to warmer parts of the world. Many of us have parents who have chosen the warmer climate. And as long as everyone remains healthy, this living arrangement works well.

 

         What happens, however, when a parent gets sick and the children are hundreds or even thousands of miles away? Who will deal with the crisis and how will it be dealt with? What if hospitalization and long term care is needed? How will the children manage their parent’s care and still deal with their own young children, jobs and everyday needs from so far away.

 

         Recently, a new and much needed profession has surfaced. It is that of a patient advocate. This is a professional whose job it is to make sure your parents get the care they need, when you cannot be there. They know how to navigate the health care system and are familiar with medical tests and their implications. They can speak to the doctors for you and help monitor the patient’s progress while keeping you abreast with the situation.

 

         I recently received a letter from one such person. This is how she describes what she does.

 

         “In my business, I accompany elderly patients to the emergency rooms of local hospitals, to the doctor’s offices, and traveling, as well. These services are particularly valuable to elderly people who live alone here, and their children live up north. When an elderly person lives alone and needs to navigate the healthcare system without the help of a family member, it can be a difficult and frightening experience. I am an RN with a BSN and MS.

 

         I am also a Registered Legal Nurse Consultant. I have over 33 years of experience as a healthcare professional. I have a great deal more education and professional experience than a patient advocate. Historically, a patient advocate has been an individual who works in a hospital and speaks up on behalf of the patient/family for hospital services that need to be attended to.

 

         My role as a nurse consultant involves educating the patient/family regarding the doctor’s therapeutic regimen, coordinating healthcare services, overseeing emergency services when needed, and acting as a liaison between the patient, doctor, and out-of-town family members. I function as a healthcare provider, advisor and coordinator, which is different from a patient advocate.

 

         There are many elderly people who live alone, here in South Florida. As soon as they arrive here, the out-of-town family should make sure that their mother/father has a local doctor. In the event of a medical emergency, the doctor can be notified and the patient will already be familiar to the doctor, and the doctor will be familiar to the patient. Too often, that connection is not made, and when a crisis occurs, the elderly patient has to navigate the complicated waters of the healthcare system alone.

 

         As part of my work I would share with the family the doctor’s therapeutic regimen, including treatments and medications. If the elderly patient needs to go to an emergency room because of a medical emergency, I will stay with him/her until they are admitted to their room. Throughout their emergency room stay, I will call the out-of-town family with periodic updates so they will know the status of their loved one.”

 

         blangrn@hotmail.com 

         (305) 778-6327

 

         There are patient advocates in most of the warm states where may of us like to winter or live. The way they conduct their jobs may not be exactly as our letter writer. But basically they are there to advocate for and be there for you and your loved one when family members cannot be there.

 

         Many (like our Floridian writer) will speak to groups on important topics such as health maintenance and disease prevention, family medical history, safe administration of medications, your medical chart, mental health, understanding your insurance payments and denials, medical tests, what your doctor is looking for, and other topics of common concern.

 

         Patient advocates are also a good idea for anyone living alone anywhere. One does not have to have children or wait for their children to hire an advocate for them. It is a gift you can give yourself if you’re concerned that the need may arise when you are far from anyone who can help.

 

         It is also something for well spouses to consider engaging for themselves, if their partners are unable to help them in an emergency and their children do not live nearby.

 

         Note: I have no personal knowledge of the letter writer or her business. Publishing parts of her letter should not be considered an endorsement but a sharing of a relatively new and much-needed profession, and is a place to start should you have the need of such services.

 

         You can reach 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/long-distance-caregivers/2007/03/07/

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