As Edward’s caregiver I often think about death; especially when his mom is away for a couple of days (like she is right now) and it’s just the two of us.
It’s not that I worry about a dangerous dip in the quality of Edward’s care when she’s gone—I do a good job keeping him alive—but I wonder what would happen if something happened to me and there was no one else in the house to take over. If I had a heart attack in the middle of the night, what would Edward do? He doesn’t know to call for an ambulance or how to use a phone. He likely won’t understand what’s happened.
Last night I imagined how it would all play out. Edward would stay in bed late into the morning because no one had told him it was time to get up. Then he’d go to the bathroom because he couldn’t wait any longer. After that he might open my bedroom door, see me, and maybe think I was still sleeping. Because I’m the one who always makes breakfast, I suppose he’d then go back into his room and watch a movie and wait for me to call him. Eventually, when that didn’t happen, he’d find his way downstairs and into the kitchen and grab something to eat—some milk and a banana I’m thinking. And then what? How long would it take for someone to know that Edward was on his own? What would he do?
It's the thought of Edward left unattended that breaks my heart. I know that, logically, he’d likely be okay. But because caring for him has been a 24/7, decades-long job—for me and his mom or his caregivers at his program or his siblings—the thought of Edward being left on his own is deeply unsettling. He is made to be cared for and protected. I’m here for him. The thought of him being uncared-for is unbearable. For all his life, I’ve tried to provide the best care possible. To not do my job would be abandoning him. A psychologist might say I’m a little too enmeshed with Edward and don’t have proper boundaries. Perhaps they’d be right. But part of me thinks that this very deep passion is a very human thing to experience—it’s right to feel a love that can’t bear to leave another alone.
As I lied there in bed, running my little scenario and feeling the pain of never wanting to abandon Edward, I wondered if God felt the same toward me. Technically, I suppose, God is always with me. But then I remembered that Bible passage where God talks about moving mountains to get back to his people, and I recalled the promises he made to never leave or forsake them (were that even possible). Could it be that God can’t stand the thought of leaving his loved ones alone either? So, maybe, when I feel this way toward Edward, I’m feeling a very God-like thing. Of course, my heartache is exacerbated by Edward’s vulnerability—he needs me. Given that we all have needs, I wonder if God experiences a caregiver's ‘I can’t leave them alone’ passion all the time.
This is a comforting thought—for that day when I can’t care for Edward anymore.
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