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A well spouse often has so many roles and responsibilities that even those closest to her don’t always see them all. S/he is a spouse, parent, care giver and usually the breadwinner. S/he spends days in chores that are rarely seen by anyone outside her home. Even adult children who are so close to the situation and may even live in the home may not grasp the extent to which the well spouse is tied to the ill spouse and the home.
It was Janet’s birthday and her children knew she needed a break from her care giving chores. Her closest friend was a snowbird and spent winters in a warmer part of the U.S. Her children asked this friend if it would be alright if Janet spent a week with her. Janet’s friend was thrilled to have Janet visit her. The children decided to surprise Janet with an airplane ticket south to warm weather and relaxation for her birthday.
Janet’s son had agreed to move into their home for the week and care for his father. And so the children thought they had all the bases covered for a lovely gift of respite for Janet. But when the children surprised Janet on her birthday, instead of being elated, the gift depressed Janet and she told them she could not accept it. Janet loved the thoughtfulness of the gift and appreciated the love it was given with.
The problem was that she was embarrassed to tell her children why she could not leave for a week. She did not want them to know that leaving her job for a week would leave her without enough money to buy food and pay her bills for the month.
She also knew how much her husband loved having dinner together with her each night and couldn’t see her son having the patience to feed him and make it a pleasant experience. She had never discussed with her children what getting her husband ready for bed actually and practically meant and she felt it would be humiliating for her husband to have her son deal with him in this manner.
Janet’s children were upset. They didn’t understand Janet’s refusal to accept the gift. Janet for her part, refused to explain why. This was a part of her life that she didn’t want to share, even with her children.
Masha’s daughter had her fifth child and Masha wanted so much to get on a plane and come and help her. Unfortunately she didn’t have the funds to hire help for her chronically ill husband as well as a purchase a plane ticket. Seeing his mother upset and not being able to be there for her daughter, Masha’s son volunteered to move in and care for his Dad. It was Reading/Study Week at the University and he could just as well study in his parents’ home as in his apartment.
Masha had her doubts, but the pull to go and help care for her new grandchild quickly washed them away. Calling home several times a day to check up on her son and husband, Masha could hear the change in her son’s voice and mood. As each day progressed, “everything is just fine.” gave way to “where is…?” and “How do you…?”and “Whom do I call when…?”
Finally, toward the end of the week, her son began to be concerned that he had not had time to study for his exams, was exhausted from waking several times in the night in order to help his father, and really hadn’t realized the extent of what he had volunteered for. Marsha finally cut her trip short and went home to rescue both her son and her husband. Both men were grateful when she returned.
Her son, exhausted, told his mom how he couldn’t believe how little he knew about what she did every day, even though he was the youngest and the last child to leave home. Further, now that he had this insight, he wanted to help his mom more. He admitted he didn’t want to do the care giving but maybe he’d be able to help with shopping or errands.
Even those closest to us – sometimes even the people who are with us 24/7 – often have no idea what is involved in being a well spouse and the family caregiver. Perhaps well spouses should be more open with their families, but many people in this situation do not feel comfortable with themselves, or respectful of their spouses, by sharing the intimate details of care giving. What is important is to assume that there is more than we see on the surface to care giving chores.
Knowing exactly what will be expected of you is essential before you offer to take over. Making sure you are up to the task will allow the well spouse to totally enjoy her/his trip without guilt, recrimination or the need for an early return. Knowing what is feasible in the life of a well spouse, before you give a gift that can’t be used, will avoid disappointment and heartache for everyone.
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The incident was completely unforeseeable. The only term to describe the set of circumstances surrounding it is “freak occurrence.”
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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.
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.
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/a-gift-for-a-well-spouse/2009/01/21/
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