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When What You Can Do Changes (Part II)

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There was a time when I wore a message button daily. I wore it more to remind myself of the message than anyone else reading it. Sometimes I wore it on the outside of my dress and sometimes on the inside of my coat. It was my guide. It helped me say “no.” The message on the button read, “Extreme stress is when your mouth smiles and says, ‘I’d be happy to,’ while your brain is screaming ‘No, I can’t do this.’”


 Last week I wrote about how our expectations of what we can do need to be realistic. What we are capable of doing changes with age, stress and circumstances. The expectations others have of our abilities do not change. And so, what we did 20 years ago is what continues to be expected of us. (And, unfortunately, is something we may expect of ourselves as well).


Dad may anticipate the same caring as he becomes ill that you gave Mom when she needed you 15 years ago. The problem is that you can no longer deliver in the same way. Yet for many reasons we agree to these expectations, pushing ourselves beyond our capabilities. The result is that both the caregiver and care-recipient pay the price and neither gets what he or she anticipated.


Resentment comes when your mouth says, “Yes” in direct defiance of your brain. Anger is an inevitable outgrowth of that resentment. And that anger will find a way to come out. It will find a release and will be directed at the person whom you resent, the one who is sick, who is also the one you love and want to care for.


The anger will also come out to those nearest and dearest to you; your children, spouse, parents, siblings, etc. It will hurt and it will destroy. The anger will be seen in sudden and unexpected harsh words that come out of your mouth. If the words are not harsh, the tone will be. And as if you are watching some stranger, you will wonder who you have become.


The anger may come in the form of negative looks and often minor (and sometimes major) excessive use of physical care.  Transferring a person from a bed to a chair requires strength.  You might have done it easily 15 years ago, but now, with your bad back and oncoming age, it seems to be harder to do. It seems almost impossible.


Being angry with yourself because your ability to care has diminished, you suddenly find yourself pushing when you use to place, being abrasive when you used to be gentle, holding on tighter than is needed when you support, frowning when you used to smile and your directions suddenly sound like demeaning comments. These minor and not so minor transgressions do no go unnoticed. You notice them and get upset with yourself and the person you are caring for notices them. Worse still, the sick person knows they are the cause of this behavior, this anger, and this resentment. Whether it is a spouse, a parent or a child, knowing they are responsible for your obvious misery doesn’t make them happy.


Once you have reached that point of resentment, after care giving for perhaps years or even decades, the reality is that your loved ones may be getting assistance at your hands, but not your care.


We fear institution placement and feel guilty when we get others to do what we feel we should be doing, knowing the care of our loved ones will be sterile and from strangers. But once we have pushed ourselves beyond our limits and have reached the point of anger, isn’t sterile care and smiles from strangers better than resentful care and emotional abuse from us?


Isn’t our inability to acknowledge our diminishing capacity as the years go by, causing more harm to everyone, including ourselves? Can it possibly be putting the ones we are caring for at risk and our own health in jeopardy? Who is being helped when you do all the driving, even when you can no longer see clearly at night? Can you afford to have your only bathroom closed to you for an hour each morning and night while your spouse is being readied, when you are suffering from the incontinence that comes with aging?


Taking responsibility for our limitations does not mean we say “no!” to caring for our loved ones and just walk away. It does mean finding a way that accommodates both the caregiver and the person needing care. The first step is realizing what your limits are − both your physical limits and your psychological ones. Then you must accept these limits and plan accordingly. What other safe choice do you have?


Determining what the specific needs that the person you are caring for require, is the second step.  Third is to accept that you do not need to be the one who is meeting all the needs all the time. Help can be hired or volunteered. Hiring help and even looking at placement for respite or full time care, when the person you are caring for is only causing pain for everyone, may be the best option.  Some specific examples of how to do this will be offered next week.


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.

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