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Posts Tagged ‘mystery’

I have a very difficult time dealing with people who are exhibiting signs of serious confusion or dementia. Perhaps it’s because I’m what I often describe as “pathologically honest” –  the result, no doubt, of being a judge’s daughter.  So when someone asks me a question that seems to come from way out in left field, I have a hard time not responding with what I see as “the truth.” Whether or not that’s the right thing to do, however, remains an open question.

I’ll give you a couple of examples.

One of the first times I faced this challenge in hospice was with Margaret. She was a woman in her 80s with a large, loving family who surrounded her with music and laughter, grandchildren and treats. One morning, when I approached her bed to ask if she wanted anything, she beckoned me closer.

“The air is changing. Can you feel it?” she whispered.

I was at a loss as to how to respond. I certainly couldn’t perceive any change in the air.

“No, I can’t,” I began.

“Well, you should be able to. It’s going to be in the Toronto Star.”

Before I could ask her precisely what the air felt like, she began talking about a complex machine she’d been asked to work on. She described gears and levers and a fantastical operating system that she seemed to understand perfectly.

“That’s amazing!” I said, in all honesty.

A few minutes later, I found myself chatting with her adult children who were relaxing in the hospice sun room. I mentioned Margaret’s comments to me and they smiled knowingly.

“Yes,” her son said. “It’s hard to know what to make of it.”

“Some people might say it’s the result of the medications she’s on. Or a lack of oxygen in blood stream. But somehow it doesn’t feel like that to me. Any way, I’m not about to ‘correct’ her,” I said.

“Neither are we,” a daughter chimed in. “And you know what? The workings of that machine she’s talking about are far too detailed to be the result of confusion. Mom never had any interest whatsoever in anything mechanical, and now she’s talking about complex mechanisms she has no business understanding.”

We settled on it being part of the mystery and left it at that.

All these years later, I can still see Margaret, sitting up straight in her bed, pointing towards the gardens and the river beyond.

****

On the weekend before she died, my sister Carol had a clarity and drive we had not seen in months. That’s part of why I was so taken aback when she seemed so disoriented when I arrived at her house on Monday.

“What are you doing here?” she asked.

“Umm, I’m here to visit you,” I said, more than a bit unnerved.

“Katherine’s come to spend time with you,” her caregiver B. offered. “Just like she always does.”

The sound of my name seemed to jolt her back to the present. We chatted a bit about what I’d been doing and how she was feeling and things seemed back to normal.

Then, out of the blue, she asked if I still had her piano.

“Your piano?” I asked. “Of course I don’t have your piano. It’s right upstairs where it belongs.”

I’m sure she could tell by my expression that I was freaking out.

“Not that piano! My tape of the soundtrack from The Piano!”

“Yes, I still have it,” I said a little sheepishly. “Do you need it back?”

She shook her head, laughing. She always loved to tease me!

It would be the last time. The next day, we were faced with a medical crisis. And by Friday morning, she was dead.

****

I could provide many more examples of hospice patients who have exhibited everything from mild confusion to profound dementia. Some will ask the same question  over and over again, trying to make sense of their surroundings. “How did I get here?” “Why am I here?” “Where’s my husband?”

There is no simple answer to those questions, and I’m no longer sure that pathological honesty works in all circumstances. What use is it to tell someone who suffers from profound dementia that they are in a hospice, or that they are dying, or that their husband has preceded them in death? The greater likelihood is that they will repeat their question every five minutes, regardless of whether we provide an answer.

So what are we to do? I come back to the place where I always try to begin. Be with them. Simply be with the person as they are, with their confusion, with their suffering, with their sadness. It is by no means easy. But I believe it is a way to honour their humanity, in all its complexity and mystery.

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http://www.pallimed.org/2017/01/the-dying-dont-need-your-permission-to.html

A couple of weeks ago, I came across this article by hospice social worker, Lizzy Miles. She’s also a blogger, writer, and credited with bringing the first Death Cafe to the United States. This article challenges the widely held view that we should tell a person who is near death that “it’s OK to go.”

As a hospice volunteer for many years, I’ve often heard that advice given to family members and I know that I’ve offered it on a few occasions.

The first person I said those words to was my sister Carol. She was very near death and I was sitting at her bedside, singing softly, holding her hand, speaking quietly. “You’re safe now,” I told her over and over. “It’s OK to go.”

I was operating on instinct more than anything I remember being told.  It just felt right. She’d had such a long struggle, filled with pain and near constant nausea. She was safe now, at the hospital (though she had never wanted to be there), with me by her side as she’d wanted.

And much as I never wanted to let her go, I knew it was time. All the possibilities for a cure had been exhausted. Every remedy for pain relief had been tried. It felt like it was time to let her go. I told her I loved her, that she would always be in my heart, and, hardest of all, that I would be OK. The last thing felt like the farthest thing from anything I felt. I felt like I would never be OK, that I would never get over losing her. Yet, I knew in my heart that I had to tell her I would be alright after she died. That we would all be OK. And I had to let her go.

Recently a family member asked me if she should tell her father it was alright for him to die. She told me her mother had asked her to say that, believing that her father was holding on for her. “What do you think?” she asked me. “Should I tell him?”

I had just read the article a few days before and Lizzy Miles’ advice was fresh in my mind. Still I could hear the daughter’s suffering and I wanted to respond.

After a long minute of silence I said, “I think there does come a time when we need to let go. When we need to reassure the person we love that we’ll be OK, even though we don’t feel like that right now. I think they might need to hear that we’ll be OK, even though our hearts may be broken.”

I don’t know what she told her father, though I know she seemed comforted by my words.

In this world there is so much we can never know. Before my sister died, I called myself the least spiritual person I knew. I almost bragged about it. After she died, I began to speak of death as a mystery, the incomprehensible space between life and no life. My years at hospice have only strengthened that belief in the mystery of life and death.

I speak less now. I listen more. And I grow more at ease with not knowing.

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