Deloris and I live beside the Salish Sea, which like all bodies of salt water, has daily tides. The time and size of each high and low tide varies in a regular rhythm throughout a monthly cycle. Deloris’s and my life seemed to be in a similar ebb and flow but in a substantially more erratic pattern. Certain events, however, were almost certain to take place daily; some of these were more likely to happen in the daylight hours, others were nocturnal. In many ways, especially in the years immediately after Deloris’s return home from the hospital, the nights were the hardest, if for no other reason than that the nighttime events were interruptions to my sleep. I always seemed to be tired.
Many nights, I dreaded going to bed. No matter how soundly Deloris was sleeping, as soon as I approached the bed, she was wide-awake, thinking it was time to get up. And she wanted to go to the bathroom, regardless of any identifiable physical or biological need. Her need postponed my bedtime by at least a half hour and often longer, as it took time for me to help her to get out of bed and over to the potty seat next to the bed. While not the most handsome piece of living room furniture, the potty seat (Deloris informed me commode is the proper term) seemed to fit in with the décor of a queen-sized bed (ours) and a single hospital bed (Deloris’s daybed) in the same room. And it was easier for Deloris to use than going to the powder room down the hall.
I don’t know why, but late night potty trips always took longer than daytime bathroom visits. I became easily frustrated when I was tired and wanted to go to sleep. While Deloris sat on the potty chair, however, all I could do was wait until she was finished so I could help her back to bed. I couldn’t go to sleep, even though she encouraged me to do so. If I did, she might well sit on the potty seat for hours, as she did one night, when she awoke at 2:30 a.m. to go to the bathroom.
“Do you need help?” I asked one night, while still mostly asleep. Deloris was sitting on the side of the bed, gazing at the potty seat.
“No. I can do it.”
I knew she was often capable of standing up and moving the foot or so to the potty seat, so I rolled over and went back to sleep. Several hours later I awoke to find her still sitting on the side of the bed, in the same position as I had left her earlier.
“Why are you still sitting there? Did you use the potty chair yet?”
“No. I was just sitting here, waiting to get up.”
“Hunh!” I grunted, tossing the covers off my body. I struggled to my feet, walked around to where she sat, and helped her up and to the potty chair. I then went back to bed. Within minutes, she was finished, had gotten up, and joined me in bed. She, of course, fell right back to sleep. I remained awake for nearly an hour.
Then there were nights when, after sitting on the potty chair for thirty minutes or so, she wanted to talk. I love talking with Deloris; I just didn’t want to do it at 1:00 a.m. when I needed sleep. I finally decided that if I programmed my mind to include a half-hour interlude between the time I got to bed until I was actually able to sleep, helping Deloris to make a middle-of-the-night potty run might be less frustrating. It would be part of my nightly routine, and talk might even be acceptable.
One night, I came to bed shortly after 1:00 a.m. As I approached the bed, Deloris said, “I can’t believe I woke up to the sounds of grand opera coming from your office.” She knew opera was not a musical form I enjoyed.
“It was actually Gilbert and Sullivan on TV. I was watching Linda Ronstadt and Kevin Kline in The Pirates of Penzance.”
“That’s one of my favorites. I was in it years ago with the Seattle Gilbert and Sullivan Society. How was it?”
“It was good. I liked it. Of course, I’m a Linda Ronstadt fan and I haven’t seen any other production, so I am probably not a good critic.”
Our conversation continued for ten or fifteen minutes while Deloris got up, used the potty chair, and returned to bed. It was fun, despite the time. Deloris was alert, aware of her surroundings and the topic of conversation, present in the moment. It was like the conversations we used to have. And she didn’t dawdle on the potty chair. Maybe the key was to engage her in stimulating conversations so bodily functions happened automatically without her attention focused on them.
My patience was again tested several days later when I awoke about 3:30 a.m. and saw Deloris walking (I use that term in the most generic sense) to the bathroom. Sometimes, even though the potty seat was close by, she decided to walk the twenty-five feet or so to the bathroom. Surprised she had gotten as far as she had on her own, I saw she was not stable enough to make it all the way without assistance. I sprang out of bed to help her and my presence triggered a common middle-of-the-night discussion about how it was too early to get dressed or eat breakfast. She was considerably more awake than I was and voiced a desire to stay that way.
“It’s the middle of the night. You need to go back to bed.”
“I’m awake. I need to get dressed.”
After several rounds of this exchange, with my voice increasing in volume along with my frustration level, I reached my limit. I yelled, “Go to bed. I am really damned tired of going through this every night. You wake up in the middle of night and want to stay up. That’s not going to happen. You need to go back to bed!”
“No, I don’t.”
“Yes, you do. We’re both going back to bed.”
My anger began to ebb and I saw how controlling I was being. This was partly due to my exhaustion and partially out of concern for Deloris’s safety. I didn’t want to stay up, and I didn’t think she could be up alone safely. I took a deep breath, centered myself, and took a different approach.
“Look. I am exhausted and I have to get some sleep.”
“So, go back to bed,” she said.
“I’m not comfortable with you being up and about if I am in bed. I’m worried something might happen and you’ll hurt yourself. So, if you’re up, I have to be. And I really don’t want to be. So, come to bed.”
“I understand. But I’m okay being up by myself. Nothing is going to happen. Go back to bed. I’ll be there shortly.”
I gave up, too tired to argue, and went back to bed.
Twenty minutes later, I was still alone in bed. I got up and returned to the bathroom. I found Deloris sitting on the toilet, reading a magazine, comfortable in her “library,” the water running in the sink as she waited for it to warm up so she could wash her face. She was preparing to dress and have breakfast.
Tired, frustrated, and upset, I said, “Get up and go back to bed,” and then walked away, attempting to control my emotions. A few minutes later, I returned and helped her to her feet. She stood, hunched over, her hands grasping the grab bar, her head touching the wall, unable or unwilling to move.
“Stand up.” I tried to be encouraging.
“Hold your head up. Straighten your back.”
“Okay.” She was mumbling now.
My coaching triggered no movement. It seldom did when she got stuck like this. It was as if no connection existed between her brain and her legs. As I realized the futility of my words, I had the image of the two of us standing in this position night after night after night after night after night . . . with no end or progress in sight. I lost it.
“Stand up straight, dammit!” My voice hit a totally inappropriate volume. I figured the louder I spoke and more insistent I was, the more likely Deloris’s brain would hear and transmit the appropriate message to her legs, which would then move. The reality, of course, was something else. Deloris heard my raised voice and resented my yelling at her. I walked away again, this time to hide my tears. I was exhausted, frustrated, and upset with myself for yelling.
When I finally got her back to bed, almost an hour after this episode began, I lay in the darkness, holding her in my arms, hoping I was able to hide from her my tears and quiet sobs. I may have succeeded in protecting Deloris, but I couldn’t shield myself from the painful sense of futility. I was overwhelmed by the thought that this was as good as our life together was going to be for the foreseeable future. I finally fell asleep, some time after she did.
I was beginning to understand the foundations of verbal and psychological abuse and the realization scared the hell out of me. I did not perceive of myself as an abuser. Was there another explanation for my actions? Was there a label less emotionally loaded I could apply? While there is no justification for abuse, no matter the nature, there were triggers which could be identified. Perhaps being sleep deprived was one reason I found myself losing patience almost daily. Some of my reactions were motived by fear. Deloris’s falls almost always put me over the edge. I visualized her unable to get up, having broken a hip or with blood streaming from a crack in her head. The memory of her sitting in the entryway that dark January morning several years before, her face covered with blood, was never far from my mind’s eye. Yet that midwinter excursion to the mailbox was the only time she had really hurt herself when she fell. So, looking back now, I have to acknowledge that my fear that Deloris would be hurt was only a part of my response. I had other fears as well, and staying free of these had long required me to be alert, to have my rational mind as well as all my senses operating efficiently.
For over twenty years I was a criminal defense attorney. Throughout that time people’s lives, or at least their freedom for years to come, might depend on my being alert and awake, able to respond quickly to what was happening in the courtroom. I had to be able to discern meaning in a person’s tone of voice, body language, the words being used, whether by the judge, the prosecutor, a witness, or my client. My mental acuity was a tool I saw as vital. It was something I’d needed once to succeed professionally, something I needed now to protect my wife, something that was basic to my being me—and it was being seriously compromised by my inability to sleep. At some subconscious level I knew this and I blamed Deloris, or at least her condition, for the loss of something I found to be essential.
Daytime brought its own rhythm and concerns. Some were variations on the same themes that played out at night; others were unique to the day.