Undigested — Part II

Guest author Elaine Jackson concludes her post on the death of her father-in-law.

 

by Elaine Jackson

The surgeons we met there were kind, and pleased that Dave and I were in attendance. They removed the wound dressings to take a look and Dave and I reeled. All of the flesh on the left side of Kevin’s face was gone, leaving a gaping hole the size of a fist. I could see his jaw bones. It took everything I had not to turn away. The wound was clean, not infected, and the cancer was gone.

We talked about options and there were only three: do nothing, amputate his ear and try to pull the tissue from the side of his scalp around to cover the hole, or take a chunk of muscle from his thigh and attach it to his face. The surgeons were pretty sure that the last option would kill him. We opted to do nothing. We talked about feeding tubes and Kevin was firmly against the idea. As we took the glass elevator back down to the lobby he said, “Well I guess that’s that.”

I called Debbie in PEI and explained that there was nothing to be done. She was horrified and came home within the week.

Dave and I had thought that Kevin would gradually deteriorate to the point where he would accept more help from nursing, or maybe end up in the hospital. He liked the nurses who came in to dress his wound, and I called the Community Care Access Centre to ask about more assistance. Debbie’s arrival resulted in some fireworks. She insisted on taking Kevin back to the doctor and demanded a feeding tube. Kevin had acquiesced under pressure and an appointment was made at the local hospital. In the interim, the VON nurse, who had gotten to know him quite well, intervened. She took him into his bedroom and talked to him privately. When she emerged she called the hospital and cancelled the feeding tube, and then explained to Debbie that he was still competent to make his own decisions. They had decided to let him stay at home, and not to do anything further medically.

Debbie was not okay with the plan, which in essence was to let him starve to death. She called at 4am to tell me he’d fallen a couple of times during the night and that we needed to come and help. Kevin was becoming more confused because of dehydration and malnutrition. He would sip a little water and drink a little Ensure but ate nothing else.

Debbie was in anguish. She is a cook, a vegan, and an amateur nutritionist. “His body is consuming itself, we have to DO something!” she would say. And then I would explain that he had the right to choose. That he didn’t want to go on like this anymore.

“But he doesn’t WANT to die!” she would argue, and it was true; he never once said that he wanted to die. He wasn’t going willingly, but he also wasn’t going to the hospital.

As he got weaker he also got deafer. His speech became slurred to the point where we couldn’t understand him at all. He was too wobbly to walk anymore, but he wouldn’t stay in bed. He kept trying to get up to the bathroom and then he’d crash down to the floor. We’d pick him up and put him in bed, and the whole cycle would repeat again ten minutes later. The Registered Nurse came for an hour in the evening and an hour in the morning. We were granted a personal support worker for overnight, but she couldn’t handle him on her own.

At this point my memory gets fuzzy because none of us were getting any sleep. The nurse thought that some of Kevin’s restlessness might be pain-related, and she inserted two port-catheters. One was in his arm so that Debbie and I could administer pain medication; the other was in his thigh and was for a calming medication. We were warned not to mix them up. I was not convinced that Kevin was feeling a lot of pain, but I wanted him sedated.

Kevin kept tearing off his clothes. He refused to stay covered, and kept demanding to get up for a pee, but when we lifted him onto the commode nothing came out. I taught Dave how to lift him, because when I tried to help he would strike at me. He was embarrassed by my presence but Dave couldn’t do it alone. I would kneel behind him on the bed and do the best I could out of striking range. At times Kevin sat naked at the edge of the bed, dabbing at his penis with a wad of toilet paper, as if confused by the non-cooperation of his bladder. He wouldn’t lie down, and he wouldn’t get up. I was surprised by Dave’s patience, gentleness and composure. He’d had very little exposure to dying, and yet he was a rock.

Although the drugs helped, the duration of their effect was unreliable and changeable so that we were constantly on edge. Kevin would try to bat us away from him, so Debbie would hold his arms down while I injected the sedative into the port. During one of these sessions she looked at me and said, “I wouldn’t do this to my dog!” We both gazed longingly at one of his pillows. It would be kinder, I thought.

The support worker came to bathe him, and eventually, to our great relief he started to pee in the bed. He was still agitated and crying out. The nurse had the dosages increased. We injected more and more morphine. He tore off his wound dressings, leaving blood and drainage all over the sheets. At one point I inadvertently injected morphine into the wrong port. I was mortified, but Debbie looked at me and said, “At this point, what does it matter?”

Kevin began to choke and cough every time we gave him morphine and it was horrible to witness. We propped him up on some pillows and called for the nurse to come back. She was in the middle of another crisis and it took a couple of hours. Once she arrived she administered a different drug that seemed to take care of his choking.

After the four days we realized we couldn’t go on. Kevin was sleeping for longer periods, but his vitals were strong and I realized his death could take another week or two. Barb, who had reached the end of her rope long before we had, kept creeping into the bedroom with her wheeled walker to ask “Is he gone yet?” It was with a sense of anticipation, not dread. We had a bit of a giggle when she started pulling out clothes that she wanted to pass on to David. He said, “Mom, he’s still here. He might still be able to hear you!”

We decided that we were going to pay for a private nurse to help us. Kevin had had a good health insurance plan and Dave and I resolved that we were going to go ahead even if we had to pay for it ourselves. We called several agencies looking for a night nurse on short notice. When we did find one she was a godsend. She was experienced and knew exactly what to do. She added another anxiolytic to the mix and Kevin seemed to finally relax. He stopped tearing at the ports, the covers and the wound dressing. We all got to go to bed for a solid eight hours.

I woke up in the morning and decided to drive home for the day. We’d left our house quickly. The neighbour was coming in to feed the cats, and I had cancelled all my classes and clients. I needed to make some arrangements for the rest of the week and to cancel our vacation, which was supposed to be starting the following weekend. The day alone was a guilty pleasure. I checked in and was told that all was quiet. I planned to see a couple of clients, return a few calls, and head back over the following day.

Kevin passed away during the night. By the time Dave called me the funeral home had already come to collect the body, and there were no plans for a ceremony, just cremation.

I went to work the next day and couldn’t make my body stop shaking. The whole experience had been so traumatic, so unexpected, and so violent. We had been forced into such intimacy—an intimacy that none of us had wanted. My respect for nurses, which was already high, had been transformed to a whole different level.

Kevin’s death was a string of confused, discontinuous moments in time that had no heartwarming emotions or sense of contentment or peace— just helplessness, embarrassment, discomfort and sorrow. And I have yet to digest the revelation that in the midst of it all I contemplated homicide, because it felt like it might have been easier.

About the author:

Yoga_Final-101Elaine Jackson is a writer, yoga and meditation teacher, occupational therapist, reader, wonderer, day-dreamer, eavesdropper, dish-washer, friend, and servant (to two cats with over-blown senses of entitlement). She and her husband Dave live just outside of Mount Albert, Ontario.

Phil Dwyer

2 Comments

  1. Wow. What a powerful story. The comment about how the narrator was unprepared for the trials she had to face – how none of them were prepared – makes me reflect again on how important these conversations on dying are. It’s such a relief to know that there was a nurse who seemed to know what to do to ease Kevin’s foggy distress. And how lovely to read of Dave’s “rock” quality. Bravo for courageous men like that.

    This piece is going to stay with me for a long long time. Thank you Elaine.

  2. Beautifully, searingly, fearlessly told, leaving me weeping for a man and a family I don’t even know. I’m moved by the decisions that hide behind other decisions, such as when Kevin refuses to go to hospital. I’m moved by the denial but mostly the hope that conceal themselves behind the choice to make a difficult topic off limits. I’m moved by the gorgeous prose: poetic in places, spare in others and yet achingly emotional. The VON nurse who championed this unlucky man’s right to reject a feeding tube has all my respect; that story is important to me. Stunning piece.

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