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Dealing With The System

Last week I wrote about the inability for two well spouses in different circumstances to handle an illness crisis in the same way. We each bring to any life situation all that we are dealing with at the time. Family circumstances, state of mind, finances, support network, whether a well spouse is working or not, and even being computer literate – all contribute to how we can handle a crisis. No one should assume there is a right way and a wrong way for every care giver. To do so is not only naive, but it is an inappropriate expectation to put on a well spouse and a perilous demand to place on yourself.


One suggestion often made to care givers is to educate yourself about your loved one’s illness when they are in the hospital. Use the Internet where it is “easy” to get mounds of information and then make sure your doctor discusses each of these alternatives with you, explaining why or why not they are appropriate in this case. This may sound like a good idea, but is it realistic for everyone?


We all work – whether it is in or out of the home and whether we get paid for it or not. We all spend as much time as we can in the hospital, being there for those we love. We all try our best to understand what is happening and try to make the right decisions for those who are ill. But we are not doctors and our expertise is non-existent. Stressed and depressed, many of us are not capable – after coming home late – of opening our computer to sift through hours of information that is difficult to understand and may or may not apply. Even if we choose to do that, how many of our doctors have the time or the inclination to then sift through these ideas with us, even if we are lucky enough to get an appointment for a “consultation”?


Sometimes our loved ones don’t agree with our discussions about their care. Who should decide what to do in that case? This is especially true if we decide that what is needed, is a change of doctor, often after our loved one has, for decades, been a patient of that doctor. Do we force our decision upon our loved one and add psychological discomfort to the physical problems?


Do we refuse to sign the DNR when they tell us that resuscitation will break ribs causing the patient more pain and will, in the doctor’s opinion, just prolong the agony of what is inevitable by a few hours? After consulting a rabbinic authority, there is still so much to crisis decision-making that is just up to us and for which there is no right or wrong choice.


If you do decide to research the illness and question the treatment, here are some thoughts regarding how to get the best result:


Do not expect your doctor to spend hours sorting through your material with you. Make a written list of clear, concise questions. Writing your questions down will help you remember them, keep you from rambling and give the questions clarity.


You need to know the practicality of all treatment ideas, not just to the patient, but to anyone who lives in the home, and what the side effects of any new medication or treatment may be. Do not demand that your doctor stop what he is doing to discuss the case with you at your convenience but make an appointment for a specified time period at his office or at the hospital bed, if your loved one wants to be involved. This will hopefully guarantee you the doctor’s full attention and take away the awkwardness of discussing private issues where people, who are not connected to you in any way, are milling around.


 If you can, take a bit of time to think about what you have discussed with the doctor, before you make a decision. Discuss the alternative treatment choices with the person who is ill and anyone who will be impacted by your decision for their input. Become a part of the medical team if you can. Make sure to get back to the doctor with your decision in an agreed upon time and manner.


Whatever the outcome of the treatment, it is important to know you did all you were capable of at the time based on your own life history and circumstances, and not what another well spouse was capable of. Most important, you must take comfort in knowing that whatever happened was what was meant to happen and it is Hashem who decides the outcome, no matter which approach you choose to take.


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.

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