Staying Sane While Caring for Someone with a Chronic Illness
For the last 30 years, I've been the caregiver for my husband, Mike, who suffers from Crohn's disease. He has good times and bad times. Fortunately, he's been relatively healthy for the last 10 years. But I've learned a lot about being a caregiver throughout this experience.
It's All About Adapting
The most important thing I learned from Mike's struggles is that there's no sense in dwelling on what could have been. We have to deal with the situations we're in now, adapting as best as possible. I don't mean that caregivers should become martyrs and give up on things they love doing. Just because your partner is sick and can't go out to dinner with friends doesn't mean you should miss out, too. But there are times when Mike needs me to stay home with him - times when I can't bear to leave him. That's what adapting is all about - you don't live your life the same way. But at some point, you just learn that you need to do what you need to do.
For example, eating is a big part of being social. But Mike's Crohn's often restricts his eating. It upsets me to see him surrounded by friends who are drinking and snacking, and he can't take part. He's learned how to deal with these situations - he's good at disappearing for short periods of time, away from the food, to find something else he'll enjoy. It's hard for me to see him miss out on certain experiences, but I try to find the balance between being sensitive to his situation and taking care of myself.
Another example: I love to cook, but there have been long periods where Mike can barely eat anything. I feel so upset when he can't enjoy something I love to do. But I've accepted that there's nothing I can do about it, and I do my best to make it work. We don't keep certain foods that irritate Mike's Crohn's in our house. I might eat them when I'm out, but it works for us to keep our house full of food that Mike can tolerate. And now I'm cooking new meals that we can eat together. That way, neither of us feels we're missing out on too much.
It's been hard - it isn't how we really wanted to live our lives. But if you love somebody, you make it work. You enjoy those times when you can go out and do what you want to do, and you plow through the tough times.
Your Health Matters, Too
One of the most important things I've learned through caring for Mike is that I have to take care of myself. If I'm not strong and healthy, I can't be the best caregiver for Mike - then we both lose. You do what you can for the person you love, but you have to take care of yourself, too.
Do the things that are important to you, and understand that agonizing over the pain your loved one is experiencing isn't going to help either of you. Yes, when Mike would stay home sick for days, it was hard to walk out the door to go to work or meet a friend. But I learned to trust him when he insisted that he'd be fine. He understood that I needed time for me, and that was an important gift.
It's also helpful to reach outside of your inner circle. When Mike was first diagnosed with Crohn's, I was getting a master's degree in psychology, and part of my program required that I be in therapy myself. Therapy helped remind me that I needed to be healthy in mind, body and spirit in order to care for myself and my husband. We even did couples therapy, which helped us work through issues that his illness created, as well as everyday problems most couples deal with.
When I felt burnt out from managing two peoples' lives, I relied on movement therapy. The core of movement therapy is that the body is always changing and shifting - sometimes when you feel trapped or overwhelmed, you literally have to move your body to change the feeling. Years later, I go back to that thought - if I get into a funk, I go out and walk. Just moving my body helps to shift my perception of what's going on.
Anyone who's dealing with a chronic condition goes through similar experiences, in terms of what you live through and how you face the situation. You start taking the good moments and savoring them to get you through the bad ones. You find the support you need, and you take care of yourself because you have to.
Jan D. is a middle school teacher who lives in Los Angeles with her husband, Mike, a feature film producer. These are not their real names.