Years ago, as Doug battled cancer and was unable to work for nearly a year, Mel became his caregiver. So, when Mel was diagnosed with CIDP and their roles were reversed, the notion of caregiving as a burden never crossed his mind. Now, when asked how he juggles the demands of being a partner, a caregiver, and taking care of his own needs, he said, “I just do it. It was never even a question. When I came home after being hospitalized, she did it for me, and I saw how dedicated she was to me.”

A hectic household adjusts to CIDP

Before Mel’s CIDP diagnosis, Doug and Mel had very busy lives. Both in their 50s, Doug worked 12-hour night shifts while Mel was in the Air Force and taught children’s dance classes nearly every night of the week. Together, they were also raising their now 6-year-old daughter and caring for the family’s pet cat. And their adult son was living with them.

When Mel started experiencing debilitating fatigue and weakness, she struggled to teach her dance classes. She knew something was wrong, so she checked herself into the hospital—and she didn’t return home until over a month later. Without her, Doug became solely responsible for all of the family and household needs.

“That summer was the hardest,” he remembered. Thankfully, their son and some close friends were able to help look after their daughter when Doug needed to be at work. When Mel first returned home, she had a lot of difficulty getting up and down the stairs. Something as simple as grabbing a bedtime snack suddenly became a struggle, but Doug did everything he could to help.

Mel has in-home care for her CIDP treatments, and Doug put a refrigerator in her bedroom, which reduces the number of times Mel has to use the stairs. Thanks to the U.S. Department of Veterans Affairs, Mel got a chair lift installed on their stairway, which has allowed her to be more independent. Then there are small adjustments Doug has made to make life easier for Mel, like buying lighter boxes of cat litter that are more manageable for Mel to work with.

Through the challenges, Doug and his family have found ways to adapt to life with CIDP—and rather quickly, considering Mel was diagnosed in the summer of 2023. This is largely a testament to Doug and Mel’s solid relationship. Fortunately, Mel has also seen some improvement in her symptoms and abilities, and she’s even resumed teaching dance classes, although not to the extent she had before CIDP.

A busy lifestyle requires constant communication

While Mel has had to slow down, their daily calendars are still packed. In addition to Doug’s work schedule and raising their daughter, Mel now has to make time for her treatments and doctor appointments. They remain a very busy family, which is why Doug said that frequent communication with Mel is so important to keep their lives running as smoothly as possible.

According to Doug, communication with his wife has only improved since her CIDP diagnosis. “Things do not go without being talked about. And the calendar is gold,” Doug noted. Texting regularly and sharing each other’s digital calendars has helped make them both aware of work shifts, dance classes, appointments, and family commitments well in advance.

Despite their full schedule, Doug and Mel actually spend more time with each other now than they used to. “I might stay up longer after I work a shift if I know she’s getting up soon from her sleep—just so we can hang out in the kitchen and have a cup of coffee and talk about the week.”

Beyond communicating about everyday tasks, Doug said it’s important for the caregiver and their loved one with CIDP to communicate honestly about how they’re feeling—physically and emotionally. His message to those living with the condition is to speak up about your symptoms. “You can’t suffer in silence,” he said. “You have to be open and honest with everybody involved. If you struggle to get up, if you struggle to walk, if you don’t feel like you’re sleeping well—all that stuff adds up to a whole picture that can help your doctors figure it out and help you.” 

Mel was honest with Doug about her initial treatment and symptoms. When they discussed this with her doctors, they worked together to find a different treatment option that was a better fit.

Good self-care keeps the caregiver going

As a caregiver, Doug says that taking care of himself is crucial. “It’s incredibly important when someone is depending upon you to be the best version of yourself. So I eat right, I sleep right, and I never miss a nap when I get the chance.” Additionally, he tries his best to maintain a positive attitude. Something that helps Doug do this is finding outlets for enjoyment and relaxation.

Last year, Doug joined a non-competitive softball league and managed to get his son involved as the scorekeeper and occasional umpire. “We had a blast, and it was my outlet on Sundays,” Doug said. “You’ve got to find that outlet for yourself when you’re the caregiver and there’s a lot of pressure on you.” Doug also has a home gym set up in their basement, and, if he’s short on time, which is often the case, he can squeeze in a 20-minute workout.

Doug has also found outlets for relaxation and enjoyment in unexpected activities. He realized recently that going to the supermarket by himself has become a relaxing outlet. “I get to do whatever I want to in that hour that I’m winding through the grocery store,” he said. “I can put in my earbuds and listen to music. You can take what used to be a chore and turn it into something different.” 

It all comes back to communication

For Doug, whether it’s aligning schedules, voicing a need, or just checking in, it’s all connected. And the common theme is communication. “We get by based on what we can accomplish and what we communicate,” he said. Thankfully, because of their family’s strong communication skills and willingness to help one another, they don’t just get by—they thrive.