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August 27, 2014 / 1 Elul, 5774
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When What You Can Do Changes (Part IV)

Over the last three weeks I have written about caregivers needing to accept their limitations and make changes accordingly. This improves life, not only for the caregivers but for the care recipient as well. As a caregiver puts in more supports for himself, the resentment that may result from years of care giving decreases and the relationship between the couple is better able to stay on or regain a more positive note.


But what of the chronically ill themselves? Those that have the mental ability need to be tuned in to the changes in their care-giving spouses and recognize when things become too hard for them. They need to encourage change and support the idea of outside help. Realizing and acknowledging the difficulties of care giving goes a long way to helping the caregiver continue in his role without resentment and anger.


Remaining independent for as long as it is safe and possible, while accepting the growing limitations the illness places on you, is very painful, but makes your caregiver’s job easier and the relationship healthier. Working together and caring for each other keeps a marriage strong whether there is illness living in your home or not.  Knowing when to stop doing things, knowing when it is time, for safety sake, to give up your independence, is paramount for the chronically ill. It makes the job of being cared for so much easier.


Driving, or the need to know when it is no longer safe to drive, is one of the biggest issues. I have met caregivers who have had to hide the car keys from ill spouses who refuse to acknowledge that they can no longer drive safely. Despite countless accidents and near misses, many chronically ill partners refuse to acknowledge their deteriorating driving ability. They put their family, spouses, children and grandchildren, in severe danger of literally losing their lives as they refuse to acknowledge that they can no longer drive safely.


I have known spouses who have begged their doctors to ask the Department of Motor Vehicles to retest their partners because the issue has become so contentious between them. The doctors are not always in agreement; Motor Vehicles are not always compliant and the well spouses are then left to deal with the dangerous situations on their own.


One well spouse related, “I know it is dangerous for him to be driving. He may kill himself or someone else. I have talked to him, hidden the car keys, and asked that he have another driving test. No one listens. All I can do is refuse to allow my children or myself to be in the car when he is driving. And pray that he hurts no one.”


For many productive ill spouses, no longer being able to work at the level they once did leads to denial. They may give up family life, all socializing, and give up all previous household responsibilities that they once did as they spend twice as many hours working in order to produce what they used to accomplish in half the time. 


Insisting they can still function at the same level as before the illness progressed, some of the chronically ill even risk being fired instead of opting to go on disability. They are blind to the burdens this is putting on their family while ignoring the potential for the financial ruin. Refusing to accept their deteriorating condition, some of the chronically ill hide their growing limitations from their employers.


One well spouse whose husband was a rabbi refused to explain to a congregant who was sitting shiva that he could no longer climb steps (she lived in a third floor walk-up) but instead allowed her to think he would not make a shiva call to her home, leaving his family to deal with the fallout and putting his position at risk.


Instead of dealing with his diagnosed sleep apnea, one well spouse’s partner refused to use his breathing machine at night because it was uncomfortable. She had to stay awake to monitor his breathing and almost lost her job because she kept falling asleep while teaching. 


Another was told to walk a small amount every day, while her husband followed her with a wheelchair. She was told to increase her walk each day by a few yards until she was unable to take another step and only then, sit in the chair to return home. This was the only thing that would keep her out of the wheelchair for a bit more time and keep her muscles functioning.


She refused to follow the exercise therapy and her condition quickly deteriorated so that she needed the chair full time. She seemed to be blind to the burden her being in the chair full time placed on her family, which included major household renovations and the accompanying expenses.


Care giving is hard. Few marriages survive, even when the couple stays together. Resentment grows as anger sparks, burning what used to be loving compatibility. It is only when the care giver and the care receiver both work at acknowledging their needs and growing limitations, and work at solutions that work for them as a family, do they have a chance at survival.


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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