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October 20, 2014 / 26 Tishri, 5775
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When What You Can Do Changes (Part I)

(Names changed)


As time moves on, and we get older, what we can do changes. There was a time I could bathe four kids at once, kneeling by the tub, quickly catching anyone who slipped. Now, if I go to bathe even one grandchild, I can barely feel my knees as they go from pain to numbness and getting myself up off the bathroom floor…well that, in itself, takes ten minutes. But even though our abilities change and we know we cannot do what we once did, the expectations others have of us don’t necessarily change with us.


This is even truer for well spouses and other caregivers. What you did for your spouse, the devotion and caring that you showed him or her everyday 20 years ago when the illness began, is still expected 20 years later. The same level of care is also expected by your parents should they become ill and need you. Twenty years may have passed and your stamina is less, your health has declined and your responsibilities may be more, but the expectations your loved ones have of you were defined long ago and, in their minds, you had better deliver.


When Miriam’s father became ill and needed care, she insisted he come live with her and her husband and their two children for his convalescence. Her mother, 25 years older than Miriam, was not able to care for him in the manner he needed. And so, Miriam’s father spent six weeks being cared for by his daughter until he could once again, go home and, with his wife’s help, resume a relatively normal routine. 


Almost 20 years have passed since her father’s illness.  Miriam’s children are grown and out of the house. Her daughter lives in Europe and Miriam relishes the visit she gets from her once a year.  They no longer live in the large house with the many bedrooms and bathrooms but now occupy a small two-bedroom condo and have only one bathroom.


 Last month, Miriam’s mother was told she needed surgery and a long convalescence would follow. A few days before the surgery, Miriam’s husband was taken to the emergency room by ambulance with mysterious stomach pains. Not being able to find the cause, the doctor scheduled many tests for the next few days to help determine a course of action.


Shuttling between her mother’s hospital and her husband’s hospital in the next few days left Miriam depressed and exhausted. It was also just before the holidays and besides the need to cook and clean and prepare for the occasion, Miriam’s daughter was scheduled to arrive in two weeks for her yearly visit.


 Miriam`s husband’s tests were inconclusive. More tests were ordered. Meanwhile, Miriam`s mother made it through the surgery well, but not waiting for the nurse to help her to the washroom, she tried to get off the bed herself and broke her arm. Her convalescence would now require more care and more time.


It was while discussing with the social worker what was an appropriate placement for convalescence, that Miriam`s mother angrily and adamantly refused to even consider being placed in a convalescent facility. She reminded Miriam that she had taken care of her father and now she, her mother, expected the same treatment. She would consider nothing but living with her daughter for the next six to eight weeks as she recuperated. She would not be shipped off to some home.


Miriam was beside herself as she left her mother and set off to see her husband.  She had not begun to even think of the holidays and her daughter’s visit.  How would she juggle the next few weeks with so many unknowns and so much guilt and unhappiness?


In the end, with the support of the doctor and the social worker, Miriam`s mother was told by the medical professionals that her convalescence could not be done at her daughter’s home. She needed the help of the professional equipment and staff.  And so she finally, but resentfully, agreed. 


But what of the rest of the “Miriams” in the care giving population? Not all of them can depend on the understanding of a doctor or social worker to help. Every caregiver must learn to see what his or her limitations are. They must realize that as they age and/or as they go through the rigors of care giving, their physical and emotional ability to give will change. 


Unfortunately, the expectations of those around them will probably not change. It will be left to them to deal with these unrealistic expectations. They will have to choose between their own limitations and the needs of others. 


Making the wrong choice by giving in to the pressure of what are no longer realistic expectations, will hurt both those you love as well as yourself. You will not be able to meet their needs. They will receive inadequate and resentful care at your hands and you will have to cope with your own self-anger for embracing more than you can handle. Everyone will lose and everyone will be worse off than they were before.


You can reach me at annnovick@hotmail.com

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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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