Our guest blogger this week is Anya Humphrey. Anya’s story is long and complex, but we thought it important enough to share in full. As a result, we’ve broken it into three parts — each an aspect of the same experience, but each distinct facets of that experience.
N.B. The details in this piece are honest but quite visceral. It makes for difficult reading at times. Anya’s story stole the breath from my body the first time I read it, in addition to filling me with outrage at the way the system failed her. But if we don’t confront these issues, if we mask them with idealized pictures of how we die, we do a disservice to our loved ones, and the deficiencies in the system will never be corrected.
by Anya Humphrey
I wear too much black, I thought. Maybe it would be possible, or even a good thing, to wear more colour. So I went to a store with a pretty good likelihood that I could find a plain, comfortable, long-sleeved, washable, casual-but-slightly-chic, not-easily-wrinkled shirt. I only found one candidate, which came in either a lovely mixed turquoise or black/gray. I tried them both on and decided that I looked much better in the black. But I came to buy colour. Back and forth, back and forth, couldn’t make up my mind. I took them out to the clerk and asked for her advice. She said, “Because the rest of what you are wearing is black, I’m guessing that’s what you usually wear, right?” Well, yes. I explained that I was grieving the loss of both my husband and son, didn’t exactly mean to wear so much black, but it seemed to be what I chose. My life was not colourful. And I didn’t know how to make it so anymore. And I didn’t exactly feel like it would be true, or fair, or might it even be disloyal…. And so the tears came. The clerk told me her mother works in a hospice, she’s learned a lot from that. And then she said, “You could still grieve in colour.”
I thanked her and put the black shirt back on the rack. As I walked down the stairs to the checkout, the tears kept streaming down my face. The very young cashier asked me if I was okay. I explained as well as I could. Then she said, “I’ve lost four people in the last year, so now I’m training to be a death doula. Would you like a hug?” She came around the counter and held me in her arms while I sobbed for a while. And gave me her name and phone number before I left.
This is not my typical experience of buying a shirt.
And so, with this cosmic nudge, in turquoise, I begin.
I thought if I was ready it would all just come pouring out. But no. As always, it’s stuck in my throat, a big lump that has to be extracted a bit at a time. Pulled out. Awful. And what emerges isn’t exactly a story. It’s more like testimony. Maybe someday I will tell it differently. But for now, what I need is to just say what happened.
The palliative care team arrived two years after we knew that my husband Fred was dying, three weeks, as it turned out, before he actually died. There were four people, three of whom we never saw again. We were told that nearly all deaths are peaceful, that they would be there to support us as Fred died at home, that now we had Alice, who was to be our main contact, our navigator, our point person. After they left Fred told me he didn’t like these people; he said he felt they didn’t have his best interests at heart.
The next day – a Saturday – Fred had a pain crisis and I called Alice, so grateful to have help since the doctor’s office was closed. She said she would get back to me. When she did, she had arranged a conference call with Telehealth Ontario, herself, and me. The nurse at Telehealth began to take information from me. First the nature of the crisis and the official data, then moving into medical history. I tried to condense that, but the questions went on and on. I asked why and was told they needed it and I’d better hang in with it because if I stopped and had to call back later, they would start all over again. After forty-five minutes I said it was ridiculous, that I had a way of contacting Fred’s family doctor and I was going to do that. The nurse was huffy and hung up. Alice apologized, said she hadn’t known it would go this way, but it was the only thing she could think of. Our navigator. Fred was so disgusted that he didn’t want me to pursue anything else and said he would rather just suffer. Which he did. Neither of us slept much that night.
The next morning, now Sunday, we were both haggard and by noon it was clear to me that we had to have help. Dr. S. had said if we needed him, we could call the local hospital emergency ward, where he would put Fred’s name on a list. In an emergency the ER would call Dr. S.. So I called the hospital and got a FAX machine. I rechecked the number, which was correct, and is the only public number for the hospital, so I called again. FAX machine again. I asked Fred if I could take him there. But he didn’t want to go. Too sick, too miserable, too disappointed, too gone. So I kept calling. Eventually I reached a person who said the phone had been broken. The Emergency nurse looked on Dr. S.’s list, but Fred’s name wasn’t on it. I explained our situation in some distress and the nurse reluctantly said she would call him. She called me back fifteen minutes later to say that he was out, but would be back within the hour and his wife would have him call.
We waited. Two hours later Fred was so miserable I felt I had to do something else. The palliative care doctor had given me her business card and written a personal number on it, saying we could call her in an emergency. I called that number. There was a female voice on the answering machine saying to leave a message, so I did. We waited.
By late afternoon I was getting frantic, Fred was deteriorating. At that time there was a twenty-four hour number at the cancer centre that we had used a couple of times in the past. Fred was not a patient there anymore, but I thought they might not realize that, so I called. Fifteen minutes later the oncologist on call responded and told me what to do for Fred. By nighttime he was able to sleep.
At 11:00 p.m. the family doctor called. His wife had forgotten to give him the message.
Two days later I learned that the palliative care doctor had written down the wrong number.
We learned we were pretty much on our own.
At some point a hospital bed arrived. The only place to put it was in the middle of the living room, with all the other furniture shoved around the edges, now the centre of our world. For a few days, Fred could still get up. On one of them, it was softly raining outside and Fred said how much he wished he could go outside in it. There were three of us with him that day, and we looked at each other and said well why not? So we helped him run around the house in his pajamas, barefoot in the grass, utterly gleeful.
Sometimes he would sit in a chair to eat. By then a scrambled egg and an espresso were his preferred meal. But soon came a day when he couldn’t get from the chair back to the bed. He tried as hard as he could, but he just didn’t have the muscle strength, so he ended up on the floor. Somehow, a limb at a time, I was able to push while he climbed. There was no more getting up.
He began to get confused about things, whether from meds or the death process I didn’t know. But I wanted to help him understand, to explain, to soothe his anxiety, to listen. Our daughter Claire pointed out to me that I wasn’t helping, that his brain was muddled and he couldn’t understand anymore. I hated that. It was true, but I felt I was failing him by not somehow helping him to have a clear mind. He was a Tibetan Buddhist. He wanted to go to his death as consciously as possible. He also wanted not to suffer any more pain than necessary. I had no idea how to manage this tradeoff.
One day he wanted to put his head in my lap, so I climbed onto the bed and we arranged ourselves in a way that he could do that. Why hadn’t we thought of that every day for the last two years? After he had gotten a port implanted in his chest, there was no more cuddling because it would have been dangerous and uncomfortable for him to have my head there. And then his insomnia had gotten so bad he had to sleep (or try to anyway) in another room. It had been this gradual series of losses, each one unthinkable. But now we were at The Big One.
In some part of me I think I always expected that I could see Fred to his death by myself. It would be my last gift to him, to cherish and love him into whatever is beyond this without any interference. But it began to get clear to me that I couldn’t do it. This man, my companion for forty-three years, who knew every thought and feeling I had had during all that time, my beloved, was leaving me. And whoever I was with him was dying as surely as he was. I could make his egg and coffee, get dressed, answer the phone. But I was already in a Bardo realm, one that I have not entirely left even now, seven years later. I asked his sister Gingie, visiting from far away, if she could stay on, and mercifully she did. I was desperate for help.
In that last week a nurse checked in once a day, and three times a personal support worker (PSW) came to bathe and shave Fred. We were told that we could have someone stay overnight five times. We had to pick which ones. On what basis? We never knew. So we simply began on a Monday, at the point when we were too short on sleep to cope. Mary, the nurse, said she wasn’t afraid of death, she had seen a lot of it. I was to try to sleep and she would call me if something happened.
Friday morning she said that Fred had made strange noises for a while in the night, but then they stopped. Was it that morning that he was awake, that he took my face in his hands and smiled intently at me and said I love you? I feel ashamed that I can’t remember which day, which hour, if those were his very last words. You don’t know which things are the last ones until later, and my memory wasn’t functioning very well.
Friday night was Mary’s last. Gingie and Claire and I were the ones there, expecting to be with Fred when he died, feeling that it wouldn’t be long now. But we wondered what we would do when there was no more support. At 2:30am Mary woke us, saying she thought the end was near. Fred was making a horrible sound. Every single exhalation was a moan. An unearthly identical moan. A sound none of us had ever heard before. Mary had no idea what it was, what it meant, what – if anything – we could or should do about it. It seemed impossible that it could continue, so we chanted Om mani pad me hum, the Tibetan Buddhist mantra that we hoped would send him to the best possible state. There was a slightly nauseating sickly sweet smell to his breath that must always accompany death.
The minutes ticked by, but nothing changed. We continued with the schedule of pain medications, but with some debate since we felt it was affecting his mind. We couldn’t tell if he was in agony or not.
We chanted and watched. It was hard to breathe listening to him. Hard to fathom that we were waiting for him to die. Excruciating in every way. But every breath was like the last, and they kept on. Ten minutes. Half an hour. An hour. Another hour. And another. Another.
The only thing changing was our ability to cope. Was this a peaceful death? No. Was it what we had anticipated? No. Did we have any idea at all what to do about it? Well, one, which none of us admitted until later. If we could have called anyone, it never entered our minds. That hadn’t worked for us before and it was inconceivable that this could continue, but it did. At dawn Gingie went for a run. Although the sky was clear, there was a rainbow, a Tibetan Buddhist omen. At 7:00 a.m. Mary’s shift was over and she went home. Maybe now there would be some blessed change; the holiness of a transcendent state would envelop us all as Fred travelled to the next world.
Soon after that I noticed that Fred’s teeth looked a little brown. I wondered how that could be, but felt guilty that I hadn’t thought to brush them. Then they got a little browner and I wondered more. Then there was a slight foam there. I got a piece of Kleenex and wiped it off. Then there was more brown foam, and more, and we took turns wiping away what we began to realize was blood, awful foamy brown blood. Was that causing the moan? Was he drowning? Claire said that this now topped the list of things she hoped never to see again in her life. We used towel after towel, rinsing them out over and over.
I am an asthmatic. Drowning in my own fluid is a horror for me. I had promised to do the best I could to make Fred’s death comfortable and painless and conscious. This was not the experience I bargained for.
I had reached my limit. Actually I was well past my limit. There was plenty of Dilaudid, and I was the one giving him his meds through the butterfly needle. Which would be harder to live with? An overdose or permitting this to continue?
At 9:30 a.m. a nurse arrived. She could see we were in trouble. We had never met her. She took charge in a perky sort of way. She gave him more meds, including the Scopolamine we had been avoiding since we knew it can make people more delusional. Had we changed his diaper? Surely we would want to do that. I was appalled at the thought of interrupting this sacred time with something so profane, but equally appalled that I hadn’t thought of it, that in not wanting to distract Fred from the hard work of dying I had neglected his basic needs. And perhaps had shrunk from touching him too much. She put her arms around him (I weep that they should have been my arms) and pulled him over in a motherly embrace while Gingie and I cleaned him up. Maybe a minute after we finished and were putting things away, Claire cried out, “Papa!” and we came running. There was a big breath and his eyes opened wide along with his mouth. A long pause. Another breath. And nothing more. He was dead. So clearly and so suddenly dead. Claire says I cried, that I “cast myself at his feet.” I don’t remember. The unthinkable thing had happened, and I couldn’t think it. My brain really couldn’t digest this in a normal way, and I wonder if that left a physical scar, a traumatic brain injury from which I can never fully recover. I carried on anyway, shocked that I could.
Part of the new dead reality was that Fred’s face had an entirely different expression from any he had – or could have had – in life. I tried to close his eyes and his mouth but it didn’t work. The nurse said if I wanted his mouth to stay closed I would have to tie it shut. No. I didn’t want that.
An hour or so earlier, we had remembered that Tenzin, assistant to the high Tibetan Buddhist lama that was Fred’s guru with whom he had gone to Tibet, had told us to call an hour before Fred died so that he could bring Lama Namse to do Phowa for him. This is the special ceremony that helps the spirit leave the body in the best possible way to enable it to become enlightened. We were bewildered at the idea that we were supposed to know when it was an hour before he died, but the three of us had somehow agreed at one point that it was time. Lama Namse and Tenzin arrived five minutes after he died. They took charge immediately, asking us all to be quiet, not to cling or cry or distract Fred’s spirit. They placed a special printed shroud over his body and sat at his head. I was allowed to stay in the room and everyone else had to leave. It is the greatest blessing a Tibetan Buddhist could receive at death, to have a high lama perform this ceremony. The chanting of Tibetans always has an unearthly quality to it in my experience, but the Phowa has extra elements of this, moments of explosive sounds that are supposed to eject the soul through the crown chakra. I was already in such an altered state that having this practice occurring over my dead husband in my living room brought a profound comfort. Here was the sacred opportunity Fred deserved above all else: that if the soul persists, all the hard work he had done to prepare for the next world would count for something and he would be able to enter a heaven realm, never again to have to suffer the agonies of this world.
It took at least an hour, maybe two. When we came out, the nurse was long gone and Claire and Gingie made tea for everyone. This ordinary social event. The lamas left and Ted and Gideon arrived. Unlike Claire, they had chosen not to be present when their father died. I asked them if they wanted to see his body, and they did. I turned back the shroud to reveal his face and discovered the only thing I have ever experienced in my life that makes me stay open-minded about the possibility of an after-life: Fred’s eyes and mouth were closed, and he was smiling.
The family doctor was away, so a different one came to sign the death certificate. And then it was time to take him away. The men from the funeral home were kind and calm, so comfortable with their daily job. Ted and I were in the room as they moved his body from the hospital bed onto the gurney. But I shouldn’t have been there. Blood, lots of bright red blood started flowing freely out of Fred’s mouth. I told Ted to grab a towel from the bathroom, which he did, and the men quickly swooped it around his neck to prevent it from pouring onto the floor. All this blood that had been drowning him.
Later, in the haze of that day, I was passing through the back room by myself when something happened to my mind. It was as though I was trying to remember a dream – an important dream that would help me comprehend life and death – but I couldn’t quite get it back. And then I couldn’t quite get reality back. And everything started to smear together into a psychotic mess that made me feel I was about to pass out. The phone rang, I answered it, and sobbed out my horror somehow or other to my sweet neighbor who simply said, “I’ll be right over.” She ran through the door and held me while I utterly fell apart.
As caregiver to both her husband and son through their deaths from cancer, Anya Humphrey witnessed a medical system populated by wonderful people whose good intentions were not enough. So she became a Patient and Family Advisor to the healthcare system. Her focus is on palliative and end of life care, with the goal of providing the patient and family perspective on what matters, how to provide that, and how to determine if it’s happening.