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Death Of A Spouse: Part One – The Feelings

(Names changed)


 


         People are often surprised when they see some well spouses after the death of their partners. Many seem to look better than they have in years. Some smile more and seem to make a quick adjustment to their widowhood. This has nothing to do with their ill spouses, whom they loved and miss. But it has everything to do with the illness and how it has changed their lives. Many find it difficult to reconcile the two opposing feelings. I interviewed several newly-widowed well spouses as they were struggling with the opposing feelings they were having. They tried to explain it this way:

 

         “I miss my husband terribly. But our life was like living in a war zone. You never knew when or where the next disaster would strike. The only thing you knew for certain was that it would strike. That forced us to live in constant stress and fear of tomorrow. I hated my life, but I loved my husband. So now that he’s gone, I find myself with so much less stress. The pain of watching him suffer every day is gone as well. I would be lying to you if I said the change in my life is anything but for the better. But I’m talking about the circumstances not the man. People don’t understand it. If you haven’t lived with chronic illness for twenty years, you just aren’t able to separate the two. I had to do just that, separate my hard life, anger and feelings of hatred for that life I was forced to lead from my positive feelings for my husband,” said Shayna.

 

         “I feel like I am a freed slave.” Janet said. “For the first time in 20 years I can think of my needs first. Whether it’s sleep or what to eat or going out whenever I feel like it. It doesn’t mean I don’t feel loss and sadness and even loneliness, but I also feel a sense of relief for both of us.”

 

         “My house seems so empty now,” said Mark. “When someone dies you go through their things and decide what to do with them. I packed up over 20 large boxes of medical supplies and gave them away, just medical supplies. I haven’t even sorted through her clothes or things. I needed to get rid of the medical stuff first, so I could remember how life was for us over ten years ago, before the stroke. Before I became a full-time nurse instead of a husband. Where did I keep 20 boxes worth of supplies in this tiny house? They were everywhere. Medical supplies were in the kitchen and bathrooms, bedrooms and living room. Incontinent pads were next to my books in the bookcase. Pills spilled out of the medicine chest, so I had to keep the bathroom off limits from my grandchildren for fear they would swallow medication, thinking it was candy.

 

         “Now that just the medical supplies are gone, I am only beginning to realize how this illness overtook every aspect of our life. My house was a metaphor for the illness. It permeated everything and kept growing. We both so hated the illness. But we worked hard to separate it from ourselves as a couple. Otherwise we could have hated each other as much as we hated what the disease did to our lives. We didn’t want that. Most of the time we succeeded. But, I’m sad to say, not always.”

 

         “People keep telling me, with such surprise, how good I look and how well I’m coping. What a joke. Who wouldn’t look better, without getting up several times in the night to tend to another’s needs? Sleeping through the night, actually sleeping without keeping one ear open at all times, will improve your disposition and your complexion. Going somewhere and not having to dress and feed someone other then yourself does help how you look. It even affects how much you enjoy yourself. Of course, I miss him…it’s just that my life is so much easier now. It makes me feel guilty even to think about it.” (Rochel)

 

         It became clear from the interviews that there is a strong need to separate the life under illness, the hatred of the disease and what it has done to a marriage, from the persons who live it. Neither spouse is responsible for the disease. Neither chose to live like this. It just happened, and kept growing and growing till finally it consumed their lives with no hope of it ever ending except in death. And it was only through death that both spouses became free despite the fact that they missed each other terribly.

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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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