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Caring for A Chronically Ill Spouse

Posted Aug 25 2008 3:43pm
My wife has had a chronic illness for about 13 years. We've been married for about five and a half. The whole time I've known her she has suffered from this debilitating condition, called Neurocardiogenic Syncope , that causes her to pass out or become very weak several times each day.

Over the years I've had several people ask me, "Did you know that she was sick before you were married?" The answer is yes, of course I did. Their response is always along the lines of, "Wow, that's really brave." As anyone who has had a sick spouse knows, it's not really a bravery t hing, it's a love thing .

Marriage and being a Good Husband is sometimes difficult. Caring for someone who is chronically ill comes with its own set of challenges.

Making long term plans is difficult to do . My wife and I have always been big dreamers. We want to travel the world, see new things, and take on new challenges. Because of her illness I have learned that we won't always be able to go on the dates that we plan. The trips we plan can be cut short or changed when she's unable to leave the hotel room.

That's okay with me, though. We've become flexible and more relaxed. Some of our friends have these super vacations where every single moment is planned and scheduled so that they can see as much as possible in as short a time as possible. We never do that. Usually when we go somewhere on a date or a vacation, we have a loose plan that we fill in after we get there. Sometimes they tell us they wish that they were more relaxed on their vacations.

There's a great deal of guilt associated with not being able to make my spouse healthy. Seeing others in pain causes a visceral reaction that makes me want to fix the problem. It's emotionally taxing to see her suffer and be unable to do anything. The protective male instinct that I have tells me that I've done something wrong because my wife is suffering and I'm not.

Like most men, I become focused on fixing the problem instead of finding out what my spouse actually needs at the moment. There have been times when I've been so busy trying to make her comfortable or take care of something that I haven't noticed that all she needs is for me to sit with her and put my arms around her while she cries, or to play a game with her and chat so that she doesn't feel lonely.

I've developed some interesting coping mechanisms through the years. I love my wife a great deal and love spending time with her. There are times, I have to admit, that it's all a little bit much for me. Here are some of the ways that I handle it.

Taking time for myself. It can take a lot of time to care for someone who's ill. Scheduling time for activities that I enjoy, that rejuvenate my spirit, that give me the energy required to go back to my spouse and care for them. It took me time to recognize that this is not selfishness, but is, in fact, the opposite of selfish. We can be at our best caring for others only when we first care for our own basic needs.

Communication. Sometimes those who are very ill don't realize how demanding they are being. My wife and I had to develop our communication skills to the point where I know how to tell her when I need space, and she had to learn that when I do take my space that I am able to come back with more care for her.

Surrounding myself with supportive people. I recognize that I could do better at this, but there aren't too many people with my wife's condition. Cancer patients and other illnesses that are more common have lots of support groups . It's important to surround yourself with supportive people who understand what you're going through. You can ask them questions and get a lot of validation for those efforts that you go through every day.

Educating myself. I thought I understood what my wife's heart condition was when we got married. It's pretty different when you see it up close every single day. I decided to educate myself about her condition. I went online and read studies, talked to lots of different doctors, and participated in online forums for those who had this same heart condition.

Now, I wasn't as balanced as this post makes me seem when I first began to understand my wife's health. It took a lot of talking, prayer, education, and trial and error for us to come to a happy balance in our life. I expect that will continue to happen as we go through life and her health condition evolves.

Do you have a spouse with a chronic health condition? I'd love to hear your experiences and how you have managed to come to terms with the situation. Also, what challenges do you have and how are you meeting those challenges?

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