I had thought that, since I lost one parent already, there would be a sense of familiarity, of deja vu, of “been there, done that” when I lost the next one. Not in a dismissive way, just an “ok, I’ve got this, I know what to expect” kind of way.
Dad was diagnosed with lung cancer. He told me early on, I was there to listen, I went down when he had surgery to remove part of his left lung and some lymph nodes, I let him bounce ideas off of me for future treatments. We weren’t certain of the timeline, but we knew he was sick and he was absolutely honest with me about how sick he was. It was excoriatingly, skin-flayingly, teeth-grindingly painful in the last week to watch him suffer. He knew me until the minute he died in my arms.
But Alzheimer’s or dementia or whatever the hell this is that Mom has is a completely different animal. She isn’t having some diseased cells cut away. She isn’t calling me to tell me about the latest drugs or therapies her doctor has offered. She might live for six months or six years. She has no idea who I am.
This one-sided relationship is teeth-grindingly painful in a completely different way. When Dad took a turn for the worse, it was obvious. Over a period of several days, he began having pain in his legs and hips and when they took x-rays it was clear that the cancer had spread to his bones. An MRI showed it was in his brain, too – the cancer cells lit up like the night sky I once saw in the middle of nowhere, New Mexico. From that point forward, we knew there was no rallying, no bouncing back.
Mom’s slide has been gradual except when it seems to leap forward, and there have been many times over the last year when she was almost able to snap out of it and recognize me and have a conversation. The cruelest part of that is that it gave me hope. It made me wonder how we could capture those lucid moments and prolong them, whether there was some magical drug that she could take that would clear the way for a return to herself. Those moments, when they are gone, are all I can hope for and envision, but they are much fewer and farther between and I know I won’t get a signal that tells me I’ve seen the last one. I didn’t get a sign the last time I spoke to Mom on the phone that said it wouldn’t happen again. I didn’t get a warning the last time she called me by name and knew I was her daughter so that I could savor it.
There is a part of me that wonders if I am a little bit narcissistic in my grief. A part that thinks maybe it shouldn’t matter so much whether she knows who I am, that tells me to just get on with caring for her the best way I know how without worrying whether she remembers I’m hers. Because somehow, I want to be special. I don’t want to be just one of another cast of characters who comes through to visit and smile at her. I want to be her daughter, not for any sort of recognition of my efforts, but because I mean something more. There is something about the reciprocity of a loving relationship that makes it feel whole. When I sat with Dad during his last days, holding his hand and telling him stories, even though he couldn’t speak, there was a familiarity. He squeezed my hand and his eyes danced during the funny parts, and his rough, calloused thumb rubbed back and forth against mine when I was being serious. We had a history that was fully intact until the moment he took his last breath and when I grieved for him, I grieved for all of it simultaneously, the loss of his body, his Self, and our relationship.
This time, I am grieving in stages. While there are parts of Mom’s Self that are still fully intact – her sarcasm and playfulness comes out sometimes with her husband – I have lost the history of our relationship as mother and daughter. She knows I am familiar, but she doesn’t know why. Our inside jokes now belong to me, even though she is physically still here. When we sit together, I can’t tell her stories about my kids or my husband because it confuses her – she doesn’t know these people, why am I talking about them? We can’t reminisce or look forward to sharing family holidays together or significant moments in the future because she isn’t coming to my girls’ high school graduations or weddings. There is a quality of suspended animation to it all, a sense that I am walking without a foundation beneath me.
I wish I had a succinct ending to this post. I usually am able to close the loop with some sort of insight, but maybe the fact that I can’t this time is an apt metaphor for how all of this feels right now – loose and unfinished.