Howard had accepted morphine. He’d also accepted oxygen, though he hadn’t used it much. Trisha, his hospice nurse, had managed to convince him to accept things I couldn’t have gotten him to even entertain. I wasn’t a doctor or a nurse—just a shaman. His faith was in allopathic medicine, and he trusted Trisha.
That said, he didn’t trust his hospice nurse assistant much. He felt treated like a nursing home patient with Alzheimer’s by her: disrespected, assumed to be losing his mind, treated like a child. The first time or two she came to the house, she’d gone into his room, bent down over him, greeted him, and asked him if he knew who she was and what day it was. It had infuriated him. He’d finally barked at her—and even dying, his bark could turn a pro football player into a shriveling nincompoop.
What he hadn’t accepted were a walker and a commode in the bedroom. He’d fallen multiple times, once in the middle of the night and another while I was out for a quick coffee with my friend Lisa Niederman, at his strong encouragement. Not only did he feel hovered over, he also knew I hadn’t left the house in days, and he wanted me to have an hour of freedom from the hovering.
The first fall happened in the middle of the night. I’d been awakened by what had sounded like porcelain being crashed into but didn’t intervene, knowing that doing so would only make him angry. In the morning, I discovered that he’d kicked the ceramic wastebasket as he went down. He’d managed to get himself back to his bed and hours after the event, as he told me about it, he made light of the whole incident. The second fall, the one that happened while I was out with Lisa, had left him so weak he had to crawl his way back to the bedroom. This he admitted sheepishly when I returned home.
I wasn’t the only person who hovered. Diana Wilson was coming on a regular basis and on one visit, she asked how he was eating and was very concerned when I admitted that he was eating very little—the occasional bottle of Ensure, the rare carton of yoghurt, and little more. She seemed to think that he could not build strength if he wasn’t eating when, of course, it was no longer about building strength, it was about the body going into dying mode.
On another visit, she saw music CDs next to the bed and seemed to think she could cheer him up if she played some music. I wanted her to back off. He would fall asleep within minutes of her leaving and any music playing would inhibit my ability to keep track of how he was doing through the baby monitor. Besides, the look he gave her when she offered to put music on was his if-you-insist look, the one he used when he was agreeing to something he didn’t want, just to please the other person.
But when she suggested that they do some drawing together on her next visit, I’d pretty much had enough. He weakly went along with the idea, as if it were a possibility when, actually, he could hardly find the strength to pull himself up in bed to talk with her. It appeared to me that she wanted to believe he wasn’t as bad as he was. As she was leaving, I asked her not to bring up drawing again because he was closer to death than she realized and had barely enough in him to receive visitors, let alone draw. I knew what I was saying pained her, but it needed to be said. And she conceded.
On yet another visit, I found myself eavesdropping on their conversation through the monitor. I couldn’t hear well, but the conversation seemed to have turned to dying. He told Diana he thought he knew what it was like to die. He had her attention on that one, I was sure of it. Later, he told me she’d moved in closer to hear what he had to say. “I think you just forget everything. You forget the next thing you were going to say.” Listening from the kitchen, my heart lurched.
Diana then said that some people who’d had near death experiences had reported being in a tunnel and seeing a while light. This was certainly not news to Howard. Not only was he married to a metaphysician who spoke freely of such things, but he had a strong—though strongly denied—metaphysical side to him, too. She asked if he could see a white light. His reply was, “I forgot.”
He was making a joke with this statement. He’d already said that he thought the dying person forgot the next thing they were going to say and he’d delivered the punch line like the standup comic he’d been in his youth. I had no idea if Diana had gotten the joke.
But I could also see beneath the joke. Howard was losing cognitive function and occasionally forgetting what he was about to say next in mid-sentence. When it happened, he first got a confused look on his face, then confusion morphed into fear and fear morphed into annoyance—all within the space of a few seconds.
The falls became more serious. He took out one of the towel racks and a bit of drywall with him during one. I couldn’t get him up without help. Howard swore at me when I said I was going to call hospice. He did not want them coming; did not want them to see him in that condition. I told him that if I couldn’t call hospice, I was going to call Antonio. He swore at that, too, but I knew he would view help from Antonio as less humiliating than help from hospice. Antonio not only came to the rescue, but returned the following day and repaired the wall and remounted the towel rack. During another fall, the combined strength of both Antonio and me could not get Howard up and I ran next door to beg my neighbor to come help us. I was sure my neighbor would be shocked by the state of things, but he pitched in without a flinch.
Finally, Howard accepted the idea of a walker and a commode in his room, though he wouldn’t promise to use either. Within twenty-four hours of their delivery he said to me, “I think I’m about done. I can’t get to the bathroom and I can’t use this.” He pointed at the commode.
“I know,” I replied. I did know that he was, as he put it, about done. And I wasn’t going to pretend otherwise.
One night, after I crawled into his bed to nuzzle him, he was weeping a little and taking deep breaths in an attempt to quell it. I said, “You know, you waste a lot of energy trying to keep from crying,” to which he replied, “I know.”
Clearly, we both knew a few things we weren’t talking about much. But one thing he said stopped me in my tracks. “I’m going to miss you when I die.”
I laughed in response and pointed out that he’d be on the other side; he wouldn’t be missing me. On the contrary, I would be missing him.
But later—much later—that comment reverberated through my mind. Could he miss me when he was gone? Would he? And if so, what would that be like?
Copyright 2011 by Melanie Mulhall