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One question that comes up repeatedly when talking about the lives of well spouses is, “Why do they stay in the marriage?” Another question is, “How could they leave someone so sick?” Before I explore both sides of the issue I think it is important to review what the life of a well spouse consists of. In this article I intend for you to follow a woman whose husband has been chronically ill for many years as she goes through her day.
It is 6 a.m. Amy is in a very deep sleep when she hears the doorbell. She quickly jumps out of bed, throws on a robe and tichel and opens the door for the orderly. She apologizes to him for making him wait, while she gets her clothes out of the bedroom she shares with her spouse, so the orderly can tend to her husband and get him ready for work. She desperately wants a shower but now must wait till the orderly is finished getting her husband ready. This means he needs access to their only bathroom and she must keep it clear.
He is a good orderly and she doesn’t want to lose him. He is kind to her husband, although often grouchy to her when she oversleeps and he has to wait. He has other clients and a schedule to keep. They were lucky to get his 6 to 7 a.m. slot and she doesn’t want to lose it. If he quits, she will have to go through the difficulty of getting her husband up and dressed without help until another orderly can replace him. That could take weeks.
Her husband is very particular about who helps him. It is understandable. If she were in his shoes she would be too. So she goes into the other room to prepare for her day. She realizes that she’s forgotten something she needs from the bedroom, but will now have to wait till 7 o’clock to get it when the orderly is finished.
She puts together breakfast and packs her husband’s lunch. They have been very lucky. Her husband has been able to keep his job through the course of the illness. His boss has modified his office at each stage of his deterioration. He raised the office desk, just as Amy as had to put these huge blocks under her tables at home, in order to accommodate the wheelchair, once it was needed.
He gave her husband a private phone, put in a ramp, made the washroom accessible and so much more. These were all the things Amy had to do at home. She often thought how her home now looked and smelled like a hospital, instead of a home. She had to adjust, but his boss did not, bless him.
They certainly needed her husband’s salary to help with the added medical expenses, and working saved her husband. He still felt productive. Amy, on the other hand, felt over-productive as she helped her husband into his winter coat, warmed the car and cleared it of snow and ice, got him into it and began driving him to work.
At least the children were grown. She remembers having to do all this while caring for the children as well. She’d have to force them into the car with their eyes still bleary with sleep, to take the long drive to her husband’s office before dropping them off at school and then racing off to her job. Then, doing the reverse in the afternoon, making supper, helping with homework, getting everyone ready for bed, tucking in the children and then spending the evening helping her husband with the work he took home in order to keep up.
His sharp mind had started to slow down and it took him longer to process the information. Sometimes, she even managed to lie down for a half hour (that was heaven) before the orderly came at 11:30 and she had to vacate the bedroom till he was done, sometime after midnight. Then she could go to sleep.
Hopefully, her husband wouldn’t need anything during the night. Maybe tonight his legs wouldn’t twitch and wake her repeatedly. She was amazed how he was able to sleep through it. If she was lucky she could sleep straight through for the five plus hours until almost 6 a.m., when she’d have to take everything she needed out of the bedroom. If she could give up some sleep and get up early enough, she’d have access to the bathroom until 6.
The weekends were different, No better or worse. The orderly’s hours were the same, but she could grab a nap on the couch if her husband was ok, for a while. That had become less and less frequent of late. Sometimes, if her husband was feeling well enough, she could go out for a walk. She’d try to walk where she would meet no one she knew. If she did meet someone, the conversation was always the same.
“How’s your husband doing?” and “What an amazing man he is to continue working. It must be so difficult for him.” and “Why haven’t you tried….” or “You must read this article about his illness. It will tell you about a new technique you can try.” Praises for him and what felt like condemnation for her. Oh well. Tomorrow was another day.
Tomorrow she had a doctor’s appointment and the doctor was sure to complain that she hadn’t done anything to get her blood pressure down. She hadn’t lost weight. She hadn’t found time or energy to exercise. She accepted that she was a failure, why didn’t everyone else accept it and just leave her alone!
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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.
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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/the-life-of-a-well-spouse/2007/01/17/
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