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We Are Invisible: Making The Caregiver Visible

            As we saw last week, the response to the articles entitled The Loss of Femininity (July 3, July 10, 2009) showed an overwhelming number of women identifying with the loss of femininity as they care for their ill spouses. Along with this loss came letters expressing the loneliness they feel, because their spouse’s illness prevents many caregivers from attending s’machos of friends and family.  Whether it’s a bris, a Kiddush, an out of town wedding or Shabbos Sheva Brachos, well spouses very often have to either miss it all together or spend a lot of time explaining the accommodations they need in order for their sick spouse to attend.  As one well spouse wrote, “the bris, if all is well, is scheduled for next Shabbos. Where will I stay?  Will I even be able to go?  He needs a place with a bathroom in the bedroom like I have at home. I have my own grandchild’s bris to look forward to, and I can’t even plan on enjoying it.”

 

 After years of care giving I have come to believe that “If one is sick, two must suffer,” should not be our mantra. We as caregivers are not better wives or husbands if we suffer along with our spouses and deny ourselves attendance at s’machos because no one can provide us with the housing or support the illness demands. As sad as it is, I have come to believe that we must get the support our ill spouse needs at home, if their attendance is not possible, and go to the simcha alone. We owe it the ba’al simcha, who many times is our child, who has already lost out on so much because of the illness. They are entitled to have at least one parent at their simcha to rejoice with them.  We owe it to our close friends who have been there to celebrate with us. We owe it to our spouses, many of whom want us to attend a simcha without them if they cannot be there, knowing how much we have already sacrificed.  We owe it to those spouses who don’t want us to attend if they cannot participate. We need to remind them that we too have a right to joy, teaching them, if they have forgotten that they are happier when we are happier. But mostly, we owe it to ourselves. We must enjoy life when we can and in every way we are able, within our situation.

 

             However, it is not easy to “go alone.”  Guilt, concern and loneliness often come along. And just in case you have finally gotten to a place where you can leave those emotional companions at home, where they belong, you can be sure that there will be some guests at the simcha, who with the best of intentions, will make sure they are back at your side. Comments like, “Are you sure he is all right?” and “How could you have left her?” will be common.  They usually come right before, “I’m surprised to see you here!” and “It’s amazing how well you look.” So be prepared to smile a lot and have your responses ready.

 

            When a well spouse shows up at a simcha alone, friends and family can do much to help him or her to enjoy and feel visible.  And if the well spouse is a woman, try to help her feel feminine again. Instead of asking about the partner who is at home, beyond a casual and appropriate inquiry, assume s/he is well cared for and fine. Use the time instead to concentrate on the spouse who is there. For a change, ask how she is. Tell him how glad you are that he is with you at this special time and how wonderful it is to see her enjoying herself. Tell her she looks lovely. It may be something she has not heard in years. Instead of dwelling on what is happening to the ill partner, reinforce the couple’s decision.  This is even more appropriate when the simcha is for a child or grandchild. By simply saying to your parent (or friend), “I wish Dad (Jonathan) could have been here, but I am so very happy you are were able to be here, ” you reinforce the decision the couple has made and remind the well spouse that they are entitled to experience joy. Realize, leaving an ill spouse behind takes immense preparation and sacrifice and that self-doubt and concern is sitting on their shoulder. The well spouse came alone so that s/he could share in your joy. Don’t take away their happiness in being there with thoughtless comments. If you’re not sure what to say, just concentrate on them and say what you would to any other person who is not a well spouse and you will both enjoy the day.

 

            Firsts are always hard. The first time a well spouse attends a simcha alone is fraught with insecurity. Did she do the right thing? Is his wife doing all right at home? What you say to them, how you support their decision, may be the deciding factor on whether they will attend a simcha alone ever again. The right comments, the welcoming comments, may help bring a bit of joy back into their lives.


 


You can contact 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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