I am not my sister’s keeperPosted: August 10, 2009
I am not her mother, her doctor, her legal guardian. I am not her coach, teacher, or assisted living staffer. I am her sister.
That is not an easy lesson to learn, let me tell you. Right now I am full of relief that Lily is doing okay. Last week she had to have some dental work done, which meant she had to be put under general anaesthesia. I was away from my normal life on a business trip that day, and was pleased to hear when I was able to call that Lily was a bit grumpy but otherwise fine. She was on painkillers to ease the aches of a tooth removal and fillings, and wanted to eat solid foods that she didn’t realize would make her even less comfortable. (I guess we now know how to get her to stop asking for soup – give her nothing but!)
…until, that is, a couple of days later, when she still sounded tired and unhappy on the phone with me, wasn’t really interested in eating, and had developed a fever. All of the wonderful words and affirmations of life without unnecessary worry that I’ve written about here (new window) were completely wiped out. As I’ve learned from my own frequent doctor’s visits over the past few years, high fevers normally accompany a bacterial infection. Bacterial infections are known to result from dental work (there are a lot of bacteria in the mouth, and any injury can create a physical opportunity for bacteria to enter the blood). Indeed, I had to take antibiotics before visiting the dentist for a year or two because a slight imperfection in my heart might predispose me to fatal infection.
I thus became worried. My worry intensified with the realization that it’s been less than a year since Lily was hospitalized with a Salmonella infection. My worry turned to anger and fear when my mother related her frustration that the doctors hadn’t returned her phone messages within a few hours; by that time Lily was running a fever of 104F. I went about my business, even having fun with some of the new things I was learning and seeing, but it was in the back of my mind and every so often would make me fidget in my seat as the worry became a full-on distraction. (I was in another time zone, which made me feel even more helpless than normal; I was awake while they slept, giving me that many more hours of unease.)
The doctors finally did return my mom’s call, and ordered antibiotics for her. (I am also less mad at them now than I was; they are, after all, human, and have other patients and their own lives to attend.) Lily’s sounding much better on the phone, and her fever seems to be dissipating. Her normal staff are still working with her, but Lily is staying with my parents right now. (This is actually a huge relief to me – it means that there’s a fresh set of eyes, ears, and hands that can provide some respite for my parents. They’re able to take naps and run errands or do chores as needed because of it.)
That I reacted with such strong emotion is not a great thing. I am not my sister’s anything…except sister. My righteous indignation, or just plain anger, do not have a significant place in the legal and medical framework of her care. My own depth of education into the biology of disease thus becomes a burden; I know enough to become worried or to recognize problem areas, but I don’t have the power or knowledge to help. For both of our sakes, I need to learn how to let my family have their lives continue without me immediately available, if only to be stronger and more capable at a later point when our daily lives can or must be rejoined. And I think I have to give myself permission to treat letting go as a difficult goal to achieve, and not feel bad that I haven’t mastered those emotions after ten years of living away from them.
I have NO IDEA how other people can be primary caretakers for their sibs with special needs. I simply admire them and hope that they get everything they need to remain healthy and sane at the same time…