5 Important Things to Know If You Have Chronically Ill Spouse

When you get married you say those five little words: “In sickness and in health,” but until it happens, you do not realize what that actually means. It is critical to know that your spouse doesn’t want to be sick and a burden on you. If your spouse has been alone all day, they just want to be near you when you get home after a long day because they are lonely. Your ill spouse may not say it every time, but they truly admire you for all that you have taken on to help him or her and the rest of the family. He/she is truly grateful for your moral and physical support. When you take care of yourself, it makes your spouse happy. He/she worries about you, too, and doesn’t want you to burn out from the extra workload.

Lastly, I want others to know that even when one spouse has a chronic illness, you can still have happiness as a couple and a family. The expectations of the spouses need some modification. I can’t hike in the mountains anymore or stay up past midnight, but I can snuggle and watch a movie, we can play scrabble, and we can still go out on good days. But we have to be on the same page and communicate so that each of us gets enough of the support we need to not only survive, but to thrive.

1. Be compassionate. Your spouse does not want to be sick, but he/she just is, and they often cannot predict when or where, or how severe the current flare will be, or how long it will last. He/she often does not know what triggered the flare. Whether it is a medical illness, such as lupus or rheumatoid arthritis, or Lyme disease, or a psychiatric illness, such as chronic depression or bipolar disease, he/she cannot control the symptoms. Most ill spouses also have tremendous guilt about not being able to do their part at home. Try to remember to be sensitive and understanding. If the situation were reversed, I would certainly hope for the same.

2. Be present. This can be difficult if you have a profession that keeps you away from home for long hours or days at a time, and requires you to be available should the office call in the evening. When you are home, try to be in the moment with your family when possible. Help your spouse with household tasks, such as laundry, dishes, bathing children, homework, bedtime routines, picking up children from school, taking children to and from play dates, and food shopping. Listen to each other, talk to each other, play on your electronic devices with each other. It doesn’t matter what you do, just be there. Your presence is invaluable.

3. Be the person your spouse always hoped you would be. There will be times when you just want to do something for yourself, but you can’t bear the thought of leaving young children at home to be cared for by an ill spouse. You expend all your energy, albeit physical or emotional, managing the household during the times when your spouse just can’t do the things you wish he/she could. Take a step back. Think for a moment. Remember that your spouse doesn’t want to feel ill. He/she would rather be able to take care of the things you may feel resentful about having to do. Relationships are partnerships, and they take effort to make them work. Your spouse needs you now more than ever, and you need to be that person who stays by his or her side.

4. Don’t forget about yourself. This is perhaps the most difficult of all. When the moment becomes available, seize it. You may only get five minutes, but make it your five minutes. Breathe, jump, laugh, play music, swing a golf club, throw a ball, read an interesting article, whatever. Some of the activities you may have enjoyed before becoming a caregiver will have to wait. A full round of golf, a trip to the ballpark, shopping at the mall, even a 30-minute bike ride may be too long for you to disappear from the home, either self-imposed or due to true necessity. There is a good chance you will get to enjoy these again as circumstances change at home. Children get older, medications improve, therapy restores function, you hire help at home.

5. Find something you can enjoy together. Even if you can’t do most of the things together that you enjoyed in the past, you can always find one or two activities to enjoy together, even during a siege of illness. Watch a movie, read together, play a board game, listen to music. It is difficult to plan for or think about the future, but living in the moment is critical to survival. Tomorrow is not important. Today is everything. Now is what counts. Enjoy now together.