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September 16, 2014 / 21 Elul, 5774
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Truly Selfless Love Stories

(Names and Details Changed)

I recently had the privilege of meeting with a support group that consisted of spouses, children and friends of the residents of a nursing home. I found this support group unique in that it was open to anyone who visited and felt a connection to any resident. It was also unique in the agreement of emotions that existed.

This is not usually true when a group consists of someone whose husband is in the nursing home, someone whose parent is in the nursing home, and someone whose child is in the nursing home.

The group was open to men and women, and though the women outnumbered the men, there were men present. The uniqueness of this was not in that the men attended a support group, but in the fact that they seemed to share the same emotions and outlook as the women.

I found it unusual, as the men I have interviewed in the past tended to be more practical in their outlook and buried their emotions deeper. Not so with this group. The group shared two stories with me about two of the residence. These stories have become almost legend with members of the support group, caregivers of the nursing home, and families. At the same time (for reasons that will become obvious) these stories are rarely, if ever, discussed among the residents.

One story is of a young woman (let’s call her Shirley) in her mid 40′s. She was placed in the nursing home because she was quickly deteriorating from her chronic illness. Her husband wanted to care for her at home, but as her conditioned worsened, she had difficulty burdening him with her care. It seems that she had watched her mother take care of a chronically ill sister, and witnessed firsthand how difficult this can be on the caregiver. She knew that life with the chronically ill is not romantic as presented in movies, but involves constant work and pain as you witness the person you care about deteriorate.

Shirley insisted that she be placed in a nursing facility so that her husband’s life could return to normal. Further, once there, she demanded that her husband divorce her. She wanted him to go on with his life without the burden of her illness.

The other “legend” is a young woman (let’s call her Miriam) in her 20′s. She was unmarried and still lived at home when she was diagnosed with a progressive chronic illness. The family rallied to her support, and began to make modifications to their schedule in order to accommodate her needs.

Before long, changes needed to be made to the structure of her parent’s house as she needed bars over her bed, accommodations in the bathroom, and much more. At this point, Miriam refused to live at home. She placed herself in this nursing home in order to ensure that her parents would not make the sacrifices they were starting to make. She wanted them to go on with their lives, enjoy their retirement, and not have to worry about her care.

That, she insisted, would make her happy. Unfortunately, Miriam passed away after only two years in the home. Her parents feel that their daughter gave them an incredible gift of love. They were able to return this gift in kind, because she allowed them to be there for her without the constant physical caregiving she needed.

“Being there” emotionally for a loved one is more difficult when physical care is involved. This is especially true when the physical care starts to take up much of the day and night. Being constantly tired and rarely having a break from the needs of the chronically ill can leave a caregiver with very little energy for giving emotional support. When others take care of the physical needs, it is far easier to say the right thing, find words of encouragement, and visit with a smile.

Though we may have different opinions as to whether these women should have done what they did, and whether the families should have allowed it, it is clear that their acts were motivated by love for those around them.

It is incredible to me that they were able to see the pain and hurt their disease inflicted on their family, and that they were able to not only see beyond their own pain, but also to have the love and courage to act on it and give this kind of gift to those they loved.

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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.

Printed from: http://www.jewishpress.com/sections/magazine/truly-selfless-love-stories/2005/03/30/

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