We remember the day our son was diagnosed. It was difficult to maintain composure, but Melissa did not want anxiety to become contagious. She did not remember what the doctor said after the diagnosis was rendered, called a friend after an hour, while alone, and cried.
Another family’s doctor would not confirm their diagnosis because the patient was under 3 years old. Frustrated, they finally asked, “OK, then, when you HAVE diagnosed a patient, did they behave like THIS when they were 2?” It took 1/2 hour to that answer but in this instance, care giver composure was the only way to get it. The diagnosis was needed to get services and early-intervention is crucial.
A seizure that causes injury is complicated because our child is combative after a seizure and will not let anyone examine him. Although too wobbly to walk, he will not sit in a wheelchair. There are the times that there is so much blood that we cannot tell where the injury is.
Composure is essential until the problem is under control.
A telephone call from a school or other daytime program gives news that the person you care for has a medical emergency. The caller is very detailed yet composed. Now it is your turn to stay composed and respond.
If you care for someone who has “melt-downs”, composure in public is difficult. You are angry. Your child doesn’t look as if they have disability. People are looking at you as if all you have is a spoiled child, thus, you are a horrible parent. Your shopping cart is full. You simply leave. For tonight, newspaper will have to replace toilet paper.
Sometimes, patients are so ill that they are rude to their care givers. The caregiver is exhausted and becomes frustrated. The person you care for seems like an enemy.
When have you had to maintain your composure?