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(Names Changed As Requested)
Well spouses with ill partners face a dilemma. Whether the ill spouse’s care is long-term hospitalization or a nursing home, the absence of a partner over a long period changes the nature of the family unit.
Although remaining married, the couple live apart. They are neither a couple nor are they “single,” and are seen as neither by the outside world. They even begin to see themselves in this ambiguous state.
I recently interviewed a well spouse (let’s call her Janet) who felt she had committed the biggest faux pas to a friend. Janet told me that she had a friend whom she met in her support group. They had been friends for over 20 years. Over that time, they had helped each other at various stages of their partner’s debilitation and their children’s adjustments to those changes.
Janet’s friend’s husband unfortunately had deteriorated very quickly. He had been in a nursing home now for almost 18 years. Today, he neither speaks nor walks. His cognitive skills left him almost as quickly as his physical abilities.
When I interviewed Janet, she told me that she would be celebrating her daughter’s wedding in just a few weeks. She told me that she had sent the invitations out about two weeks ago, and just now, she realized that she had invited a friend of hers to the wedding but not her friend’s husband. She had addressed the invitation to her friend and not to “Mr. and Mrs.” Janet told me that she prided herself at being sensitive to well spouse issues, as she herself was a well spouse. She was devastated by the oversight.
“If my friend chose not to bring her husband to the wedding, that was her call. It is not my place to make that decision for her. The problem is that I don’t even think of her any more as a couple. Oh my gosh, I feel so bad. I must call her and apologize and make it right.”
I have since spoken to Janet. She did indeed call her friend. Her friend told her that it was fine. She had not been insulted. As a matter of fact, she didn’t even expect the invitation to be addressed to them both. Not only was she not intending to bring her husband, but she didn’t even see herself as part of a couple after all these years of being alone. How could she expect others to?
Ben’s wife had Alzheimer’s and was in a nursing facility. It had been a very long time since they had lived together. She had lost functioning both physically and cognitively. Ben was invited to his niece’s wedding which was to take place out of town. He decided the trip would be too difficult for his wife, even though it was her brother’s daughter who was the bride. Ben responded that he would go to the wedding alone. He was shocked when his brother-in-law called and said he’d like to introduce him to a nice lady at the wedding. He didn’t know how to feel or how to react.
Shelly’s husband had been in the hospital for almost two years. During that time, they decided that it was time to move closer to their children. Shelly needed support as her husband deteriorated, and she had always wanted to be near her grandchildren. They decided that they would place the husband in a nursing home in her daughter’s city. He was unable to live alone, and neither of them wanted to burden their daughter.
Once that was done, Shelly would sell their home, move to their new location, and find them a place to live. Her husband would still have a home to come to whenever he could.
Shelly was shocked when a friend asked her about the move. “So I guess your plan is to put your husband in care here and then move out of the city to be near your daughter,” the friend said. Shelly could not understand how she could have made that assumption.
Well spouses who are no longer living with their partners live in limbo. They are not single, but not part of a couple. They are neither included with people without partners, divorced or widowed, nor do they fit with other married couples. For many well spouses, this has gone on so long that not only do their friends see them as being alone, but they see themselves in this way as well. Though they try to hold onto whatever vestige of togetherness and marriage that they can, it is very difficult. Living alone is just that. It is being alone and that, over time, is how everyone begins to view it.
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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/are-we-a-couple-or-not-a-couple/2004/12/22/
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