Ch.34. Pat Realizes She’s been Hallucinating.
(Originally written Autumn, 2019. Added Update at End of Essay.)
“Ron, I want the truth. Was anyone here in the house besides us?”
Mornings are the hardest time in our marriage since Lewy Body set in. Pat often wakes up in that in-between state some people call a waking dream. She is certain that other persons are in the house, often children but sometimes adults. She may believe we’ve begun doing something together that we need to complete, such as packing a bus full of belongings to take to others. If I suggest, much less try to convince her that she’s hallucinating (or being delusional may be a better term) she often becomes angry. I could say nothing and go along with her fantasy but that doesn’t always work either. For example, then Pat might insist we get up and find food for the kids. Basically, it’s a morning by morning situation in which no one approach always works best.
This morning Pat thought several other people were in our home. She was anxious that they would show up in our bedroom. “Don’t you see them,” she asked me. When I said “no, I don’t” she began to become upset. But then something unusual occurred. She sat in bed a couple minutes and then turned to me. “Are there any other people in the house?” I hesitated, frankly not eager to incur her ire with an honest answer. I told her that usually I would answer her question with a cautious “Well, I don’t see anybody right now.” “I want to know the truth, Ron. What is real?” So, I told her that we were the only people in our house.
Pat took in my response and its full implication: “That means I’ve been hallucinating, doesn’t it?” she asked. I nodded. She cried a little. She said she hated having Lewy Body Disease. She wanted to wake up in reality and not in some hallucinatory dream world. She wanted to know how often this happened. When I guessed maybe once a week, she looked somber and scared. For a few minutes all her denial and minimization vanished. We shared a glimpse both of our current situation and of an uncertain future.
Being in reality is a mixed blessing.
Pat’s comments on Pat Realizes She’s been Hallucinating.
I’m aware that all of memories may not be true memories but in general I think that what comes through my mind is relevant to where I’m at. I may still talk on the phone or think I’m talking on the phone but when I wake up and realize that Ron is not aware of it that doesn’t bother me at all. In fact, I hope he’s forgotten that I’d been talking on the phone in my sleep or whatever. My goal is to deal with our life as a normal life, not one with odd and weird things intruding.
UPDATE: June, 2020
When I reread this essay, I realize that our shared reality has changed dramatically over the last several months. We don’t discuss “hallucinations” anymore as if there is one and only one way to envision the world. Instead, we have largely incorporated into our lives a more flexible universe; here in this universe there can be more than one “Ron.” For example, we started our drive today with one Ron present. But then Pat asked later in the drive if the same Ron was still there. In this case the answer was affirmative, but at other times one Ron becomes replaced with another or both give way for a while to “Dad,” Pat’s best caregiver. Sometimes Pat becomes anxious; she worries, for instance, that one Ron or the other may be left behind when we go to the store. Sometimes I become anxious, mostly when I regress to trying to convince Pat that there is only one of me. But, mostly, we are learning to live with and participate relatively comfortably in our newly enlarged household.
Pat’s Comments on this Update: I agree with what Ron has written. It is thoughtful.