Composure

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?

8 thoughts on “Composure

  1. My grandmother had dementia, and eventually lost the ability to chew and swallow effectively. Before we knew that, though, she choked. At a restaurant. At my birthday party. During peak business.

    My sister had witnessed another relative choke a few years previously, and she totally lost it. I kept my composure and tended to her while someone else took care of everything else. As I cared for her in the restaurant bathroom, we heard two twenty-somethings in the stalls talking about how that old lady’s family shouldn’t take her in public, etc. I maintained my composure as I escorted my sister out of the restroom and convinced my mother she didn’t need to “kick their judge-y a**es.” It was the next day before I processed it, while I was alone in my dorm room.

    • Danielle – thank you for sharing this. You show so well how composure isn’t just for dealing with the people in our care – it is required to deal with others (medical folks, educators and even bystanders!) – and we need it just to keep ourselves intact until we can steal a moment to just feel and think.

  2. Thank you from me as well, Danielle. We have seen alzheimers and other forms of dimentia and the experience is surreal. You are obviously strong and brave and we so appreciate your respose. None of us are alone. Blessings. If you would like to chat at any time, you know it would be welcome.

  3. Every ER visit, every hospitalization, every time something changed. I found it interesting, if not expected, that I was the support for the extended family as they were worried about what would happen to my child. They looked to me for the knowledge and strength to cope. I definitely needed composure to answer all those questions repeatedly and to reassure everyone that Sarah would not die–yet.

    • Darlene – isn’t it intriguing the way the roles shake out. Sometimes a family will have what seem like “specialists” who share the important roles: the emotional anchor; the organizer who keeps up with all the paper work, meetings, etc.; the “geek” (I mean that in the positive sense) who reads up on all the current articles, research and stuff… But then again, in some families that whole load falls on one person, and that is a crushing load to carry.

      • I remember when my first wife was in the terminal stages of renal cell carcinoma. She had not wanted her two twin daughters – who were in graduate school – to know how serious her situation was.

        So when they did find out, they took their frustration and anger out on me. They got over it eventually, and arranged to take time rotating being home to care for their mother during the final stages. It was a big help to me and I know my wife appreciated it.

        But yes, it affects different people in different ways.

    • Congratulations, it is very difficult to do. This happens not only to the adult care giver but the other way around. A nine year-old girl had just lost her father and there were many people in her home. She was forced to leave a room if adults started to cry and wondered why they kept telling her how much they were suffering when it was her Dad who passed. Darlene,we hope that you have a place to receive as well as to give even though it should be your family doing the giving.

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