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Embracing The Short Leash, A Reaction


         I recently published a letter from a woman named Mae. Mae could not understand why her mother, Sidney, had difficulty being accountable to her daughter for her whereabouts. Mae felt that as a daughter of a chronically ill father, she had suffered enough and her mother, the well spouse, was wrong in not easing her mind by telling her each time she left the house.

 

         Mae’s response to my article brought several reactions. Some people wanted to know if Mae was a well spouse and had ever experienced the confinement that comes with being married to the chronically ill. Some identified more with the daughter’s needs and had no understanding of the mother’s point of view.

 

         Below is a response that summarized what many of the well spouses wrote. I thought it was worth sharing because it gives such clarity to the confinement, both mental and physical, that a well spouse faces daily.

 

 

Dear Ann,

 

         I don’t think Mae should have written about this at all. It is clear to me that she has no idea what any of this is about. I am sure she is not a well spouse, although I have no idea. I am not bashing her; she just obviously doesn’t know what a well spouse’s life is like.

 

         It’s the same thing with any other situation that you don’t understand, perhaps like when someone lives with an alcoholic. People ask, “Why do they stay? Why do they not seek help? Why do they enable the alcoholic to continue to live this way of life?”

 

         I don’t understand the life of someone in that situation and I don’t have the answers, but I will support the wife all the same by listening, hugging, caring and not by trying to fix their way of life and life choices. It’s the same thing with a well spouse. We make our choices and others don’t have to understand why or decide that our choices are wrong and the ways we handle situations are wrong.

 

         We just need people to support us if they are our friends, and not add guilt to our choices of how we handle things, such as the situation with our children. What we, the invisible wives and husbands of the chronically ill, deal with on a daily basis come in many shapes and forms.

 

         They include having some independence from an illness, having some freedom and not relying on caregivers, being free not to wonder every time you are away from home and your cell phone rings, wonderng what crisis may have occurred again at home. They include wondering if your spouse remembered this time to lock the doors or turn off the stove, and wondering if he found the car keys you hid, or walked out and lost his direction.

 

         I do understand the concern of aging parents and health issues and the dangers of a city life, but like you say, your children don’t tell you everything or where they are going all the time. It’s different if you are going away for a few days; then of course, your family needs notice and phone contact info. But what if your children lived in a different city? Would Mae have to phone her kids every time she goes out for the evening?

 

         When I travel to visit family or friends, upon my arrival they ask me if I would like to use their phone to make a long distance call home to let my family know I arrived safe and sound. I tell them, “No thank you.” My family knows that if something happened and I did not arrive, the family or friends on the other end would be contacting my family and then there would be a concern. In my family’s case, they always feel that no news is good news.

 

R. (A well spouse)

 

 

Dear R.

 

         I have no idea if Mae is a well spouse or not. Clearly the issue of taking care of aging parents concerns people no matter what the health status of the individuals in the family. But I do think there is a difference in the reaction from someone who has always been free to leave their home with a clear mind, their only worry is if they locked the door securely, and that of a well spouse.

 

         For a well spouse, even when they are away, their mind is always at home, fearful and waiting for the next disaster to strike. Once that burden is no longer there and they are free to come and go without accountability for the first time in years, it becomes something precious and guarded, not to be given up easily.

 

         That is perhaps why R. feels that Mae is not a well spouse. Her letter doesn’t seem to understand the lifestyle that Sidney has been forced to live and the freedom Sidney is just beginning to enjoy.

 

         And so I continue to write about well spouses and their life. I hope that the decisions they make (like Sidney’s reluctance to be accountable to her daughter) will be better understood (whether agreed with or not) by those who have always had the freedom. My hope is that with understanding the life of a well spouse, there will be more support for how they live their lives and less criticism of their decisions.

 

         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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