Listening for a cry for help never stops. At the slightest sound, we awaken. With epilepsy, our son’s sounds hit our ears with a bang and we need to quickly figure out whether that noise is actually a seizure.
Day and night, 24/7. Our son barges into our bedroom and says “Good job clean up the floor.” Translation: “I just peed on the bathroom floor.” Or, “My bed is all wet.” It gets taken care of, and yes, it takes it’s toll.
During the day,Tim might be in an important meeting, or simply working, Melissa might be sleeping off a horrible migraine or pains from her primary disability, or just at the occasional visit to the salon and have stinky hair color on her head. The message comes and everything else is dropped.
Evening time together is often interrupted by visits where our son speaks loudly and wants something right now, such as help on the computer. This happens most often when we watch the one or two TV shows we like, or we are having an important conversation. We are derailed every day and every night.
Caregivers work to give as much attention as needed by constantly running to the person in our care. We wear ourselves out. Ironically, the people we care for also become agitated by our running in and out.
We try to know when we don’t have to come to the rescue and that is a huge challenge because of the “what ifs”.
You know the “what ifs”: What if I don’t go to them when I should have? This is especially challenging when we are awakened from yet another deep sleep, no matter how deep the sleep, because our care for them is strong.