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Excerpt from Couples Facing Illness (book/CD)

by Dr. William July

Take Care of The Caregiver

    When your spouse is ill you have a greater chance of developing a serious illness, or even of death. This phenomenon is called the ďcaregiver burdenĒ or ďcaregiver bereavement.Ē Itís real and it is something we should all pause and seriously consider. This is exactly why I  struggle with the term ďwell spouse.Ē Things arenít ďwellĒ for the well spouse because this person is juggling multiple roles which create major stress.

      Actually, in my opinion thereís no such thing as a well spouse and an ďill spouse.Ē I donít like these terms because they imply one spouse is sick, even burdensome, and one spouse is well, as though nonaffected. A couple is a psychological, emotional, and physical system. They are an integrated unit of mind, body, and soul. When one person is ill the system itself is ill and it is not going to function at maximum capacity

     A joint study by Harvard and the University of Pennsylvania published in the New England Journal of Medicine in 2006 provides insight into this phenomenon. The results of the study suggest that the spouses of seriously ill patients are significantly more likely to develop life threatening illnesses themselves. This higher risk of death and serious illness is related to factors such as stress, emotional strain, lack of daily practical help, and financial challenges.*  

     I was shaken by the news that Dana Reeve, actor Christopher Reeveís widow, died of lung cancer at the young age of 44,* particularly because she was not a smoker. Although I donít know the details of her life and death, perhaps she is an example of the effects of stress on a caretaking spouse.  

    Does this mean all caretaking spouses are doomed? Are caretaking spouses all heading for illness themselves? The answer is no, because it all depends upon each caretaking spouseís approach to the situation. We need to take care of ourselves because we are at a higher risk for becoming ill too.

      Here are some of the factors that combine to potentially affect the health and wellness of the caretaking spouse: 

  • Most of us have to work overtime, if not an extra job to make up for the lost income of our spouses and the additional costs of the illness. This extra work creates both physical and mental fatigue and often leads to emotional strain. You have to guard against anxiety and depression creeping in.

 

  • You have a greater share of the domestic chores. Things that would ordinarily be split between two healthy spouses are usually handled only by the well spouse. For example, after working overtime or getting off from your second job, you also have to stop at the grocery store to do the shopping, come home and cook dinner, then mow the lawn.

 

  • As the caretaking spouse you play the role of nurse, physical therapist, patient advocate, and counselor. Your responsibilities may include preparing special baths, rubbing on a salve, or a therapeutic massage. You also make calls to doctors, pharmacists, and clinics. You probably spend additional hours on the internet researching the condition and searching for new answers.

 

  • If you have children or other dependants (including pets), your responsibilities are multiplied exponentially in even more categories.  

 

I Found Relief In Food

    With so many things weighing on them, itís no small wonder that many caretaking spouses donít seem to have the time to take care of themselves.  I can totally relate to this. During the first five years of this experience I stacked on 30 pounds. I remember standing naked in front of a mirror inspecting every fat inch of my body. The happy and athletic-looking guy on the cover of my first book in 1998 was buried under 30 pounds of blubber.

    The funny thing about getting fat is that you donít see it coming. It happens in small subtle ways. You canít wear a certain pair of pants. Or a favorite shirt gets tighter. Then you have to get new pants. You notice your profile in a window as you approach the building you work in. Perhaps a friend or coworker makes a comment. And then, boom! Suddenly, it feels youíve turned into this human helium balloon. You look at the scale and cry foul but itís true. Youíre fat! The question for you at that point is why? What am I doing that let me get to this point? What changes do I need to make to correct this?

    Everyone has a way they deal with stress. Some people try to drown their troubles in alcohol. Others try to chase away the blues with crack, meth, or a cocktail of prescribed medications they collect like candy. Others seek solace through compulsive sexual acts. And some lash out in aggression. Those are just a few of the self-destructive coping mechanisms people find. The methods are as vast as the types of people on earth.

    But for many Americans, eating is self-medication for managing stress. Eating provides pleasure both psychologically and physiologically. Itís also socially acceptable and can be done right out in the open. If you like marijuana you canít just whip out a joint in your office. But you can sit in your office and inhale a big piece of chocolate cake. You canít sit at your kidís Little League game and knock back Bacardi and Coke. But you can have a chili dog with cheese, fries, and an extra large Coke and get a high from that. The psychological relief it provides is that you are getting pleasure. Youíre doing something for yourself and it is making you happy. Chemically the high fat and high sugar foods are also affecting your body in a way that gives you a high.*  Thatís why overeating is the drug of choice for many people.

    Iím no different. My drug of choice is desserts.

    Looking back on it, I can see exactly how the 30 pounds piled on. I was working full-time as a professor and also teaching extra classes because we needed the money for health-care issues. In addition to that, during the early years of Jameyís illness I was in graduate school completing my doctorate. When I wasnít taking care of my wifeís various needs, I was grading papers or deep in my studies. Meanwhile my parents were growing more frail and needing my help too.  In hindsight, I donít know how I didnít just melt down altogether. My whole life had become working or caretaking. Thatís when I started eating because it tasted good, which made me feel good. I was getting high on the food. If we had something tasty for dinner, Iíd have a second portion without thinking about it. I started reaching for extra pieces of pie. I bought giant chocolate chip cookies. Cheese cakes, carrot cakes, lavishly iced white cakes, any cakes! I was eating more calories and fat in the dessert than in my entire meal. It was the perfect combination for weight gain: high stress, low activity, and high fat intake.

    Iíd still make time for a short walk or going to the gym but that was counteracted by the sweets I was eating. The weight stacked on and my pants didnít fit. I found myself buying new pants to fit my girth and the old regular-sized pants were being shoved further and further toward the back of the closet. I was changing sizes faster than I could explain or rationalize to myself. When I finally stepped on a scale I was horrified. It was a rude awakening. I felt as though someone had splashed cold water in my face.

    At the same time, I also started having a health issue that concerned me. I was experiencing trouble breathing while asleep. I went to a doctor for a routine checkup still in denial about having gained that much weight. His scale confirmed it with even a few more pounds than my home scale. He preached a sermon to me about the dangers of carrying excess weight. I took it to heart because Iíd already had the same talk with myself.

    I had committed the cardinal sin of caretaking: I was so concerned about everyone else and I was putting their needs so far ahead of mine that I wasnít taking care of myself. While it may appear noble it is not at all wise. If you run yourself into the ground, what good will you be to your spouse and family?  If you donít take care of yourself, you canít take care of anyone else.

    I knew I had to do something to turn this around. Fad diets were out of the question - they do more harm than good. I wanted a healthy plan that I could really live with. Basically, I had to change my habits. Since my Jamey had been a personal trainer before she became ill, I turned to her for help and she put together a sensible program for me. First she told me to write down everything I ate for two weeks. I did, and then we calculated my calories. I found a website that had calorie information for all types of food and used it to measure my caloric intake. Then we calculated the number of calories I needed to eat to be the weight I desired.

    I started counting calories and dedicated myself to an exercise program featuring alternating days of 30-minute walks, swimming, and weight training. Soon people at work were noticing my weight loss. Next I pulled my old pants from the back of the closet where they had been banished when I started gaining all the weight. Suddenly sweaters and shirts I couldnít wear came back into my wardrobe. The inches and weight continued to drop. I also stopped having problems sleeping.

    I want to emphasize that nothing else changed. Jamey didnít get any better. I didnít have a lighter load of courses to teach. I was still as busy as ever. However, I changed. And thatís the only thing I really can control. Remember, if you donít take care of yourself, you canít care for anyone else. Right now, as I sit here writing this Iím dressed for the gym because after I write this line and save this to my hard, drive Iím going to work out.

 

Action Plan

1. Stay in shape!

     As I said earlier, of course you donít have time. But you must make the time. Exercise; eat good, healthy foods; and make sure you get some daily quiet time. My quiet time is in the morning when Jamey is asleep. Thereís not a sound in the house and I look forward to that as a time to get my thoughts together. I often combine it with some light yoga stretching and then I eat breakfast in the silence.

 

2. You must have a life beyond the illness.

    If you donít have a life beyond the illness, you are being unfair to your spouse as well as yourself.  I know the idea of you being out playing softball or walking through an exhibit in the museum defies the saintly image of the doting caretaking spouse sitting bedside. But if you donít refresh your mind, soul, and body youíll ultimately wear out, and you may need a caretaker yourself.

 

    For example, I found a life beyond the illness by going to graduate school. Stepping out of my unpredictable world and into the regimented and calculated academic world provided relief for my mind. It was something that made sense because it moved along a finite track from start to finish, unlike the illness which was unpredictable and filled my life with variables and question marks. Instead of being stressful, graduate school was stress relieving because it forced me think deeply about something other than the illness and what it had done to our lives. Today, Iím happy to say that I earned a masterís and a Ph.D. in Psychology during all of this.

 

    Your job is to keep living: to earn income, to provide good conversation and warm hugs, and to bring a sense of normalcy and life into the household. Your spouse is depending upon you to do that. If you mirror the sorrow and pain they are experiencing they will only feel worse.

 

    But watch out for a potential backlash. Sometimes the ill spouse feels guilty and ashamed and your achievements or busy living life can actually make them feel bad because they feel they are a drain on you or that you are going on without them. This is tricky. Let me warn you, however, the answer isnít to stop living your life and become a plaster saint by the bedside. The answer is to reassure them that they are in fact an integral part of your life and your achievements. You may need the help of a professional with this, depending upon the depth of the anger, pain, and resentment. The entire illness scenario does more than just trigger the physical pain. It also brings many raw emotions and unresolved issues to the surface for both of you involving things beyond your relationship that may go back as far as childhood. But donít let it fester. Address it.

 

3. Dump the stress

    We all need to find constructive ways to dump stress, like trash, into a trash can. I have a number of things I like to do. As I said above, I enjoy exercising. I also play video games on my Xbox. I listen to music frequently. My wife and I watch a lot of comedies on DVD.

 

3. Have a spiritual grip

    Youíre going to need more than just good intentions and exercise. Talking to God is very therapeutic for me. Iím not speaking of a God sitting on a throne with a fistful of lightning bolts. Nor some image in the clouds. Iím talking about a real and personal oneness with all creation that makes me feel safe and empowered.

  

    I also have affirmations that I put in key places that will pop out at me. For example, I have a small card on my desk on which Iíve written ďExpect a miracle today. Create miracles through action. Accept the miracles.Ē Iíve had this on my desk for years. It reminds me to think of the possibilities of doing something to bring my thoughts and prayers into action, and to accept the fact that the answers to things I want and need may present themselves in ways I did not anticipate and above all, to trust God and go with the flow.

 

    You may or may not be a Christian and Iím not writing this to proselytize, just stating my experience. But I can tell you that you will not make it in this journey of trials without a firm spiritual practice in your life. The chronic illness is bigger than you and your spouse and much of it takes place in a way that is beyond our reasoning and certainly beyond our physical capabilities.


Questions to Consider

1. What are some social activities you can have that will enhance your feeling of well being?

2. When was the last time you had a physical exam? Have you talked to your physician about ways to optimize your health?

3. What adjustments do you need to make to your daily schedule to make quiet time for yourself?

Journal idea

    What are you doing to take care of yourself? What changes will you make to create time for you to take care of yourself physically, emotionally, and spiritually?


 

* N.A. Christakis et al. and P.D. Allison, ďMortality After Hospitalization of a Spouse.Ē New England Journal of Medicine  354, issue 7 (2000): 719-730.

* John Oí Neil, New York Times, March 7, 2006.

* Diane Martindale, ďBurgers on the Brain,Ē New Scientist, February 1, 2003.