I was walking on eggshells. I’d been sworn at enough the previous night to make me more than a little careful around my husband. He was dying—days from it at most, as far as I could tell—and he wasn’t himself. But I was weary of being the bad guy. While he had been the quintessential noncompliant patient for some time, I had been the annoying person trying to persuade him to comply, arguing against his attempts at doing things he could no longer do—things that would require me to call for help. I was the annoying person who knew how close to death he was and wouldn’t pretend it wasn’t so. I was the annoying person who was seeing him at his most vulnerable on a daily basis.
My tactic of the day was to walk on eggshells with him. Unfortunately, he was still lucid enough to know that something was off between us. He wanted to know what was wrong. I demurred. He conjectured that I was upset because he wasn’t dead yet.
That was downright cruel. I knew he was close to death and I wanted the release of death for him, but I didn’t feel impatient about it. There had been times over the nearly four years since he’d been fighting the metastasized cancer that I had certainly wondered when it would be over and fantasized it being over. But as his death drew near, I’d felt the sacred quality of it and felt honored to be witness to it. I wanted the release for him, but felt in no hurry for me.
I didn’t feel honored to be on the receiving end of swearing and cruelty, though.
In tears, I told him I couldn’t comply with his wishes to leave the door to his room closed, now that the commode was in it. He looked at me as if completely confused and said, “I don’t understand you at all.” And in that moment, he meant it. In that same moment, I considered the possibility that this statement might be true of the entire relationship between us.
He said he wasn’t hungry, but changed his mind and decided he wanted scrambled eggs. I made the eggs. He pulled himself up in the bed by grabbing onto the covers and ate a bite or two. Then he sat there for a long time, as if he’d forgotten he had a plate of eggs in his lap.
I said, “Your eggs are getting cold, Dear.”
He replied, “Shut the !&%$ up.”
I left the room in tears.
The hospice nurse had asked what we usually did on Christmas and suggested that I follow our traditions, to the extent possible. Not much of what we usually did was actually possible, but it was Christmas Eve and I decided to make a grocery run to buy some of the things we usually had on Christmas morning as we opened gifts: shrimp, caviar, smoked salmon. Against all reason, I also bought a standing rib roast, which I found in the reduced section. We’d often had standing rib roast for Christmas dinner and even though I knew he would not want it—any more than he would want the shrimp, caviar, or smoked salmon—I decided to buy it. At least he would be able to see that I was treating Christmas as I usually did and wasn’t exactly on death watch.
He was quiet that evening. I climbed into bed with him for a bit and lay there, allowing my mind to wander to our life together. Here we were at the end of it. And it was, for the moment, peaceful. I kissed him and told him I loved him when I left the room. And he said, “I love you, Dearie.” That erased any hurt I had sitting in my gut from earlier in the day.
The next morning I came into his room and said (with all the Christmas cheer I could muster), “You made it to Christmas.”
“When was the last time I did that,” he replied.
I could have taken it as just another bit of wry humor from him, but he had said it wistfully and a few days earlier, he had commented that he felt as if he’d been through all of this—this process of dying, in this body—before. I had suggested that he was describing déjà vu and he allowed that it might just be that. I’d told him I had a couple of theories about déjà vu and asked if he wanted to hear them. Surprisingly, he did.
I suggested that he might have planned all of this before he came into this body and that he was experiencing what he had planned out. An alternative theory was that he was leaving his body some of the time and coming back in (something I knew, in fact, was happening), so he was sometimes watching himself from outside his body.
I might have proposed other theories—I had them—but left it at that. He had little to say but seemed to be considering what I’d said.
I brought out our usual Christmas fare, though he had little interest in eating any of it. He seemed to like the smoked salmon more than anything else, but that only meant he had three bites of it to the one nibble of shrimp and no nibbles of the caviar. Nothing had tasted right to him for months, and over the past week he had eaten and drunk so little, I knew he was edging closer and closer to death.
I brought the few gifts to be unwrapped—all for me because everyone finally understood that he wouldn’t be around to use anything they would give—and opened them on the bed, commenting on each. He could barely stay awake for it, but he made an attempt and managed it, just barely.
He slept most of the rest of the day, though his sleeping was interrupted at least once by an attempt on his part to leave the bed to make his way down the hall to the bathroom. I could not let him even try at this point. I told him that if he needed to go to the bathroom, he had to use the commode. He objected. I pressed. He objected. I finally told him that if he made an attempt to get to the hallway bathroom, I would pick up the phone and call hospice or go next door to ask for help because I knew he would not be able to make it there and back and I was smart enough to know that I could not restrain him. I knew he was royally pissed about this and told him that I couldn’t let him hurt himself, that I was not his enemy. He insisted that I was his enemy and I told him that he would rethink this position at some point. What I didn’t say was that he might rethink it once he was on the other side and had some perspective.
His body was fading and his mind was fading with it. One moment he was sweet and peaceful; another he was irrational, agitated, and angry. He seemed to be losing sight and hearing, too, and I was unable to tell how much of his behavior had to do with what must be the alarming fading of these senses and how much had to do with the malfunctioning of his mind. But I did know that his mind was abandoning him rapidly.
Christmas night he struggled to the commode and was on it for an hour, then two hours more a little later. He now had no energy to lift himself from it and slide back onto the bed. I attempted to help him, against his wishes, and failed. I knew I couldn’t leave him there all night. I had not option but to call hospice. He sat on the commode babbling, “Blueberries, blueberries, blueberries.” I wondered if his mind had left him completely or if he was trying to avoid swearing. It was frightening to see this brilliant, virile man in this condition—even though I’d been present during the entire downward slide.
Kristen, the hospice angel of a nurse on call on Christmas night, came from the other end of the metro area. Together, we managed to get him settled.
He was not only on morphine at this point, he was on Adavan, a drug meant to reduce anxiety and/or depression, often prescribed to people who are at the end stages of dying. I had come to understand, both from my online research and from my conversations with his hospice nurse, that patients who are dying are often restless and disoriented. Adavan helped with that.
But what I was experiencing with my husband had been confusing over the past week or so. According to what I’d read, there was a pre-active phase of dying and an active phase of dying. The former could last a couple of weeks, while the latter tended to last three days or so. These were, of course, averages. I’d seen his lower legs and feet swollen (pre-active phase) and blue (active phase) one day, then fine the next. It was crazy making. He had the restlessness and confusion of the pre-active phase, along with prolonged periods of sleep, overall withdrawal, coolness of skin, decreased intake of food and liquids, and comments that suggested to me he was trying to resolve anything unresolved between us. But he had been lucid most of the time and had not shown other signs of being in the active dying phase . . . for the most part. He was becoming incoherent, was losing his physical senses, and was—the shaman in me saw—mostly gone.
Sometime earlier, I’d intuited that he would be gone by Christmas. It hadn’t occurred to me that his essential nature would be mostly gone by then, but his body would still be with me.
Yet, I knew time was very short.
Copyright 2011 by Melanie Mulhall