Ch.65 A Feeling of Helplessness
August 2020.
“Ron, what’s going on in the room above us? There’s crashing sounds and I don’t know what’s happening.” Pat says this to me on a Wednesday morning just after I step out of the shower. She looks scared.
The problem is that there is no room above us. Just the roof of our home. I try to tell Pat this, but she becomes angry with me. There is no doubt in her mind that there is a place upstairs from which ominous sounds keep emerging. We sit uncomfortably with each other for half an hour, repeating ourselves. Finally, Pat says “I am not crazy!”
“I know you’re not crazy, honey,” I reply. “Could this be Lewy Body affecting you?” (I can predict from past experiences that this inquiry will only result in angry denial, but I am feeling desperate). “No, Ron, absolutely not,” Pat insists. Fifteen minutes later we’ve moved out of the bedroom and to our dining room table. In the meantime, Pat has gone outside to look up at the roof. We are at an impasse.
I am feeling utterly helpless. Pat is suffering emotionally; anything I say only makes things worse. She needs me to believe and support her, to agree that there is an upstairs room where people are throwing things around. I could do that. Rather, I could have done that 45 minutes ago. Pat wouldn’t believe me now if I said it; she’d accuse me correctly of trying to placate her.
There is only one option I can think of, namely to break the impasse by doing something else. Fortunately, we do need to pick up a book from the library to show to our book club members. The club is meeting later this afternoon. Pat accepts my invitation to ride along. By the time we reach our car I’m feeling better. The ride to the library turns into a country drive just at the start of fall and together we admire the bright red leaves that always emerge first as the woods begin coloring themselves. Our day brightens too.
Let me return to the sense of helplessness mentioned above. I am aware from many conversations with care partners that this is an all too common sensation. Helplessness, for me, is a combination of empathy because I feel my loved one’s anguish, frustration because I can’t help the person I love, despair as problems spiral out of control, and shame about not being wise enough to help my partner.
Acceptance of one’s limits is one antidote for helplessness. However, that kind of self-awareness and self-compassion is difficult to achieve when the person you love is hurting a lot. I’m feeling some acceptance now as I write this passage, in retrospect, but I couldn’t get there in the middle of Pat’s pain.
Pat’s comments on A Feeling of Helplessness: Dealing with an issue like this, repeating ourselves and disagreeing and becoming at an impasse I feel utterly helpless as well and I feel anything I say will only make things worse. I don’t want you to placate me. I think the idea of doing something else is a good diversion and our day can brighten that way. I know I feel helpless because I’ve been hearing things that are loud and I can feel your anguish. I feel helpless and shame about not being wise enough to shut up.
Where is the upstairs noise coming from? Who is causing it? Somebody’s throwing stuff around. It isn’t me or you. It’s an unknown. I can’t come up with any satisfactory explanations so basically I feel awful, you feel awful, we both think the other person is lying although that’s probably not true. I don’t know what to do so I go inside myself to cry quietly – feeling dumb and helpless when I have no idea what to do. Why would I have any idea what to do?
I don’t want to argue. If you can prove there isn’t another level I’ll believe you. Except there have been people outside our room on this level and they are outside this door on our level. But that happened after I heard all the crumbling. Maybe that’s me crumbling. Sometimes it feels like it is.
ADDED NOTE: January 2021.
Pat and I always read our essays before placing them on the Lewy Body dialogue website. This time we agreed that the theme of helplessness above is a little too strong and dark. We have decided to add a more positive note.
There have been no roof episodes like the one mentioned above in the last five months. That’s good. But what is better is that Pat and I can still discuss what’s happening in our lives, including the occasional disruptions caused by Lewy Body. I think the main message in our blog is that we are still a team and nothing, not even Lewy Body, can separate us