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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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While the Hollywood image of dying often features a loving family gathering around the deathbed, life often presents a very different reality. In a chapter in my book – entitled “One Big Happy Family” – I talk about some of the challenges families may face at this difficult time. I often say that each of us, when the faced of a parent, becomes an exaggerated version of ourselves with both our best and worst characteristics showing up in spades. As well, conflicts that might have occurred decades before may resurface as siblings vie for attention and recognition.

End of Life University

What do you do when a family (your own or a patient’s) is crumbling due to unhealed resentments and irreconcilable differences? Find out now.

conflictpodcast

In today’s episode I’ll share my best tips for helping families move through conflict toward resolution during stressful times like the death of a loved one. I’ve had lots of experience with this work during my years as a hospice doctor so be prepared for a longer-than-usual episode!

Announcements:

slide01My new course Step-by-Step Roadmap for End-of-Life Planning is almost ready for release (just a few days away as I record this!) The course is simple yet comprehensive and will help you examine your mindset, values, beliefs, and fears about death before you make decisions about your end-of-life healthcare. Go to eoluniversity.com/roadmap to learn more and sign up to be notified as soon as the course is released.

Sponsorship:

supportonpatreon-e1412764908776This podcast is sponsored through the EOLU donation page…

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http://passing-on.org/

I just found this PBS film narrated by Scott Simon on dying (primarily in America, but relevant to all). It includes some excellent resources as well.

 

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A great reminder of the importance of talking about what we want (and don’t want!) at the end of our lives.

http://montrealgazette.com/life/opinion-its-important-to-have-a-mandate-to-make-your-dying-wishes-known

(and my book is mentioned as a resource!)

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My family has been sharing a nasty flu bug for the past month of so. I have to admit that I was the first – but I like to think that I didn’t pass it on to my partner, who got sick a full week after me! Regardless of its origin, it’s now spread to my son-in-law, daughter, and grandchildren. Good times! And it’s not even time to get my flu shot yet!

I have to say that working in hospice has taught me a lot about patience in the face of the relatively minor illnesses we’ve had. Being with people whose illnesses are terminal certainly put things in perspective, even if it doesn’t stop me from whining occasionally!

I still vividly remember an experience I had at hospice a couple of years ago. I was helping a staff member to reposition a patient who had suffered from a neuro-muscular disease for several years and now was dying of cancer. I noted that the staff member seemed to have a bad cold and offered my commiseration. She replied, “I know, and I really don’t have time to be sick!”

After we had finished and the staff member had left the room, the resident said to me, with a strong note of anger in her voice, “Do you think I have time for this? I have no time.”

Her comment has stayed with me – in fact, it’s one of the things that led me to entitle my new book “I don’t  have time for this! A compassionate guide to caring for our parents and ourselves.

And I’ve thought about her, and all the people I’ve met, whose time has gone, in so many cases, far too soon.

 

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