If you have read any of my other blogs, you’ll know that I have a daughter who has become increasingly more ill over the last 3 years. She has a condition called ME/CFS and she is severe. One of the first things I did after realizing that her condition was chronic and likely to get worse, was join a support group. I found myself feeling really angry at small requests, resistant to spending time in her room, and resentful of my ever increasing responsibilities. I wasn’t alone. Post after post hosted confessions of frustration, anger, and defeat.
There are a million reasons why any caregiver feels these things, and they are completely normal. Because of this, at first I just shrugged off all those feelings as “par for the course” for a caregiver. Here’s the thing though: My daughter is persistent. She cares deeply about our relationship, and so do I. So, she calls me out and we talk about it. To my surprise, I am learning that much of the anger and resentment I feel go way beyond the circumstance. And I am wondering, how much of what we feel as caregivers is birthed from our own traumatic experiences?
Example one: My daughter is alone all the time. This is because of light/sound sensitivity, so it is unavoidable, but it is lonely. When she asks for me to come spend time with her, two things happen that trigger (inner) responses of resentment and frustration. 1. She wants me to put a hand on her face, or hold her hand, or touch her back. 2. Even though she cannot always communicate or interact, she wants my undivided attention. This means that if I want to look at my phone or read, she will ask that the hand I am using to scroll or flip pages is the one she wants on her head, back, or hand.
One night she could sense my frustration — because I probably audibly sighed, and asked me to explain why it was so difficult to just spend time being with her without being distracted by some form of entertainment. I was frustrated with the question at first, feeling like it was obvious. I want to relax and enjoy reading. I don’t want to sit in the dark and do nothing. But those things weren’t entirely true. There was an agitation that went much deeper. The more she pressed, the more I really thought about it. I realized that part of what bothers me about my caregiving relationship with Megan is that she is completely reliant on me and…