Constant Vigil

Reality gets distorted by the constant vigil of care giving.

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.

7 thoughts on “Constant Vigil

  1. I can relate very much to this. Changing wet bed linens every day takes a toll even with the automatic washer/dryer. It shouldn’t be that big of deal, yet exhaustion comes quickly. 24/7 care– even when she is with someone else, she is not far from my thoughts.

    Best moment–the big smile I get when I return after a brief absence(couple of hours).

  2. No argument here. Dean once told me about a study he’d read about spiders – when they’ve built a web, if it’s then destroyed, they’ll laboriously rebuild it. But if it’s broken over and over, eventually the spider gives up trying to build it properly. He just sort of throws it together, and it’s no longer perfect and symmetrical. That’s the way it is with me – if I make a heroic effort and clean the floor, wash the walls, clean the windows, even paint, the whole effort is undone in a day or two. You get to feel, “Why bother? Nobody else cares, why should I?” Then I just gather my strength and clean sporadically, but it never looks really clean or nice. My house will never look like other people’s and just that fact is enormously stressful.

    • We understand. That being said, please try to be less hard on yourself. Your house probably looks nicer than most! Neither our house nor our son will be like other people’s houses or sons. Yet we have many friends that visit and we have wonderful times. As we have heard, approximately 1 in 6 boys have what our son has. I wonder what percentage of peoples’ houses are perfectly clean! Judgemental people should find other friends. Who needs that stress? You don’t deserve the pressure.

  3. Melissa –
    If I understand from some of your FB posts, one of your sons has autism. Is this accompanied by epilepsy or is epilepsy a part of the autism? I don’t know that much about autism except that it is very tough on the caregivers.

    • Allen, yes, our son is diagnosed with severe autism. Our pediatric neurologist told us that epilepsy is common with the main diagnosis of autism. As a young guy, he experienced “frequent generalized seizures.” He would often “zone out” and we could wave a hand in front of him while he remained completely unaware. At age 14, as puberty started, he suddenly began having grand mal seizures. At age 18, he continues to have them, medication reduces their frequency.

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