Marriage to a Terminal

Normally this is where I post recipes for CFers and their families to find high calorie meals. Today I want to post something more personal.

Soon my partner and I will celebrate five years of marriage (nine years as a couple). This does not make me an expert, but I think I have something to offer those in relationships with CFers thinking about becoming more serious. When we were engaged I sought out any information I could find for what to expect once we were married and frankly, there wasn’t a lot out there other than doom and gloom. So I thought I’d offer up an inside scoop with my top 5 things you can likely expect when you marry a CFer that are also true, but not all doom and gloom.

#1 You know each other, inside and out

The things that take senior citizens fifty years of marriage to do without blushing will cross your threshold in the first six months. You will truly know what it means to intimately know your mate. You will be the second opinion on if today’s phlegm is the usual color, or darker than yesterday. You will argue with him about how much blood is too much before you call the pulmonary specialist. You will discuss and compare details of your bowel movements to see if something is out of whack or if dinner last night upset both of you. You will know the smell his body makes when his sugars are too high. You will hook up his IV medications in the middle of the night so he can sleep. You will visually check places he cannot see. You will rub creams on places he cannot reach. You will have no qualms about asking him to do the same for you. After a while you will lose the need to do things like close the bathroom door.

As strange and unromantic as it may sound, it’s actually kind of nice. Partly because you are completely comfortable with each other (farting contest anyone?) and partly because you benefit from CFers being medical geniuses. Just as I take care of him, he takes care of me. My spouse knows where to rub my stomach one direction to ease nausea, and another location and direction for gas pains. He knows how to mix a [what he calls] “cocktail” of pain pills to target the specific headache I may have. He knows my body so well he can predict my menstrual cycle better than I can.

#2 No one will get your humor

There’s a fine line between humor and tragedy. CFers don’t walk that line well. Things that are hilarious to them are wildly inappropriate for the average person to laugh at. There’s a different outlook from a group of people who defied death as kids while watching friends around them succumb to their mutual disease. I think in many ways humor becomes a coping mechanism. To many CFers death is funny. Illness is funny. The conversation about what to do with their remains is worthy of a joke. If you let them write their eulogy, one quarter of it might be sentimental and the rest will be a standup comedy act. My partner and I have even joked about what his last words and last gesture will be. It is hard for them to take life too seriously because they are already inundated with tragedy in their daily lives. Humor eases the difficult conversations. Humor eases the difficult decisions. Humor about macabre things will work its way into both of your daily lives. Hospital stays are called “vacations” and “tune ups,” Pneumonia is labeled “a tough cold” and death is a betting matter. People outside of your marriage will not understand this. You will have to learn to reign it in at social functions and cue your CFer when it is inappropriate to joke about illness, death, and tragedy.

#3 Smokers will dictate your social life

Smoking is not a matter of personal choice, it’s a public health concern. When you’re with someone with limited lung function the locations of smokers will trump your social plans. As a couple we can’t go to bars because of the smokers. We can’t enjoy a meal Al Fresco because smoking is allowed on the patio. We can’t enjoy a stroll through a historic downtown square because there are smokers on every corner. A nice picnic in the park? Think again, smokers are there. Headed to a great outdoor concert? Nope. Smokers there too. Look a new coffee shop! Nope, a sea of smokers has created a cloud of filth for anyone within 15 feet of the door. Let’s play with our dogs in the front yard? Nope, five of our smoking neighbors are outside, lit up, and headed over to say hi. How about a ride on a beautiful day with the windows down and the radio up? Nope, every stop light has a smoker enjoying the nice day with their windows down too. It’s a serious thing. I’ve even ended friendships because they married a smoker. For some reason smokers think it’s fine as long as they are downwind of you, or if they just step outside for a minute. I can’t tell you how many people have tried to hide it from us as if we wouldn’t figure it out the second we stepped inside their place. Smokers: you’re not fooling anyone with the cologne, breath mints and incense. You stink even after you put it out and you bring all of those pollutants inside to the rest of us on your clothes and hair. It’s everyone’s air to share. Kick the habit already!

#4 Fights are fast

Believe it or not, it’s not hard to fight with a sick person. Even terminal people do some really dumb and insensitive stuff. But its hard to fight for long. Because you know the time you have together is limited. We still fight plenty. We fight about our families and our pillow space and how far over the car should be parked in the garage and how the roll of toilet paper should be installed. But the fight is usually over the same day it starts. Sometimes within minutes. There are so many opportunities in a day to take care of each other when you live with a CFer. Fights blow in and out like clouds. It doesn’t matter how mad I am at him, I will remind him to take his dinner pills. It shows him I care. Boom. The fight is over. It doesn’t matter how mad he is at me, he will make dinner when I work late (not eating is not an option for a CFer). It shows me he cares. Boom. The fight is over.

#5 Healthcare is paramount in any big decision

Aside of the two kinds of medical insurance we have (which frequently argue about which one should pay), we also pay a premium for hospital insurance. To not have these would cost us thousands (no, seriously tens of thousands) of dollars a month in prescriptions alone. This is not to say everything works peachy keen without weekly calls to insurance companies and doctors to get referrals, prescriptions, argue about procedures, and process orders on time. My partner (who spends a few hours a week making these calls) has every number on our medical insurance cards committed to memory.

Where most people are putting aside money for retirement, we are putting aside money for medical costs later in life when we expect insurance coverage to be worse and procedures to cost more. When looking for a new job my first criteria are if the benefits include medical insurance, if the benefits includes the spouse, at what percentage and how long is the probationary period? Even a probationary period of three months can put us in a bind if he gets sick.

Before I married a CFer I went to the doctor begrudgingly maybe once a year. Now I’m on a first name basis with many in my spouse’s medical care team and see them quarterly. Where healthcare may have been an afterthought before, it is a priority now. And it is one of the first hurdles to clear in any lifestyle changing decision.

For those out there in committed relationships with CFers, does my list apply to you too? Anything you’d like to add?

6 thoughts on “Marriage to a Terminal

  1. Haha, yes! I think this sums up CF marriage really well. I am a CFer married to hubby 5 years this year and agree with all of this except my hubby still gets a little squimish about my mucus spit cup or my cup of soup as he call it.


    • To be fair, I get a little squeamish about the spit cup he leaves lying around too. He always teases that one of these days I’m going to grab it by accident. I always do a double-take before sipping out of any cups at home. Hasn’t happened yet! 😉


      • Squeamish Spit Cup solution from personal experience.
        Pro: Use an opaque cup to ease what your husband sees… I prefer it too.
        Con: Drinking out of that same cup because you think it’s your current coffee cup. Talk about having a bad day!

        Liked by 1 person

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