Archive for the ‘Family’ Category

An article I wrote was just published on a wonderful site called KevinMD. Here’s the link:


As always, I’d love to hear your thoughts.

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When my father was dying, I often found myself saying, “I wish someone would tell me how this ends.” It wouldn’t take more than a minute before I’d catch myself. I knew very well how it would end. I knew it would only end when my father died. Whether peacefully (as it mercifully turned out) or with enormous suffering (as I rarely see at hospice), it ends in death.

And the fact was, I wasn’t ready for him to die yet. He was still of sound mind – at 94 – though his body had begun to fail. He was no longer able to go to a restaurant to eat dinner – one of our favourite activities. Eventually he stopped having “cocktail hour” with me – the only one of his four daughters who enjoyed this ritual with him. Still, we could sit and watch television together – Who wants to be a millionaire? Golf and curling – things I relished with him and would not be caught watching otherwise. I clung to those shared rituals like a drowning woman. Indeed, most days I felt like I was drowning.

Anything was better than losing my father – this man of wisdom, of knowledge, of family history.

Like the families I meet each week at hospice, I knew all too well where this was leading – but the routines of caregiving, be they cooking or grocery shopping or making phone calls, can distract us however briefly from the ultimate point of this journey. The person we love is dying. The person we love will no longer be in our lives. The person we love will leave us – forever.

Somehow we have to balance that knowledge along with carrying on the activities of caregiving. In fact, those activities are essential to providing care and maintaining our own sanity.

Soon enough we will experience what one family recently termed a “wake-up call.” When I asked him what he meant, he spoke eloquently about the impact that another patient’s death had had on him. “This is why we’re here,” he said. Not that he had really forgotten. Not that any of us is likely to forget for long.

And so we do our best, showing up as our best selves. This is what I hope I did for my father. And it is what I see families doing, week after week, at the hospice where I volunteer.



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When I was first training to be a hospice volunteer (in 2001), one of the most important lessons the leaders drummed into us was the centrality of boundaries. We were reminded repeatedly that we were not a family member, a close friend, or even a not-so-close friend of the residents. In short, we were not in the “inner circle.” That space was reserved for those who were closest to the person who was dying, be they family of origin, by marriage, or by choice. As death grew nearer, we were to maintain a distance, making room for those in the inner circle to spend time with the resident before they died.

I had no problem with this lesson, since I had struggled with boundary issues when my sister was dying and a woman we had hired to assist with her care started to feel that she was as close to Carol (or perhaps even closer!) than we were.

We were also repeatedly instructed about confidentiality and never speaking about what happens in hospice with other people. What wee weren’t really prepared for is how to be when we know one of the people who is admitted to the residence.

As someone who lives in the same neighbourhood as the hospice where I volunteer, it’s perhaps inevitable that people will be admitted with whom I am familiar, whether as neighbours, colleagues, or local activists. When that has happened, I’ve made a mental note in my mind, mostly by way of acknowledging the sorrow and loss they must be facing. I make a point of not indicating I’m familiar with them, out of respect for their privacy and the tremendously challenging circumstances they are facing. I hold them in my heart, and continue with my work both inside and outside of hospice.

A while ago, a woman was admitted with whom I had more than a passing acquaintance. We had been colleagues once upon a time, members of the same neighbourhood, and friends of friends. I was saddened to see that she had been admitted and wondered how I should be. Should I avoid her room as much as possible out of respect to her privacy? Or should I go and greet her and help make her feel welcome?

I chose the latter option, as I knew in my heart it was the right one. I knocked on her door, came to the side of her bed, and said something like, “I’m sorry to see you here – though I’m glad you can be here.” She asked how long I had been volunteering and I told her. And she told me what a wonderful place it was. We spoke for perhaps five minutes, then I left her to rest while her family went to lunch.

For the rest of my shift, family and friends visited her, and I steered clear except to respond to the call bell.

The following week, as so often happens when someone decides to come to hospice, she was much weaker, and a note in the book indicated that only wanted to see her family. Despite my desire to go in and say hello, to offer my “expertise” or “wisdom,” I knew that was much more for my own needs than hers and I resisted.

This is often the litmus test for me when I am facing such a decision at hospice. I ask myself this question: “Are you going to see the resident (or say this brilliant thing) because it will support or help them? Or are you doing it because of a need of your own? To feel helpful and needed. To be validated in some way. To feel connected.”

I really do ponder those questions before going to a room or saying or doing something, especially as a patient nears death. Most of the time, the answer is that I can be of service to the patient, whether by sitting at the bedside when they are alone or singing songs or reading the Bible (or poems or any book that’s evident in their room). And I can feel certain that I am not breaching any boundaries and getting myself “in trouble.”

It’s inevitable that we will meet people we know in the hospice work that we do. Indeed, in rural hospices and small communities, it is unavoidable. The important thing is not that we avoid people we know or pretend we don’t know them. Rather it is respecting the honour and privilege we have been given in being able to accompany people when they are dying. Sometimes that means doing the dishes or making up beds or getting more ice to make ice chips. And sometimes it means making space for family members (supporting them if we can) and respecting their time with the person they love.

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Yesterday was my father’s birthday – the 24th of May. When we were young, he taught us the poem that he grew up with: “The 24th of May is the Queen’s Birthday. If we don’t get a holiday, we’ll all run away!” I think of that little ditty whenever his birthday rolls around.

In honour of my Dad, I wanted to repost a piece from my book. It’s a story that I read whenever I am giving a talk – my way of reminding people to find the joy in the midst of caregiving, and to savour those moments, however fleeting they may be. It’s also my way of bringing my father with me wherever I go.

Finding the Joy

Bette Davis first popularized the observation that “getting old is not for sissies.” I would add that caring for your elderly parents is not for sissies either.

It is painful to watch our parents’ health and independence diminish with each new day. It is a struggle to maintain a calm, patient outlook when our lives feel overburdened and crazy.

Yet it is essential that we not let their situation overwhelm us. Though there will be times when we feel like we can’t go on, there are also moments of pure joy and delight, moments of tremendous meaning and poignancy that remind us why we are doing all this in the first place.

As I was writing about my father as he was dying, I was surprised by how many such moments existed. As I slowed down to his pace, as I opened myself up to what was actually happening, I was able to let go of my frustration and just be with him. (Hint: I often kept a pad of paper and pen on the couch beside me when I visited my father. The first page contained my to-do list. But I would often flip to the following page, and scribble down phrases and words and stories that my father would say. Since he spoke very slowly – all his life but even more so when he was in his nineties – I could actually record many conversations almost verbatim.

On the days when I rushed to my father’s apartment, dreading his “I thought you had decided not to come” greeting, I might miss the humor implicit in his instructing me where to find the money for my trip to the mall. Or the irony in his instructions regarding our choice of take-out meals. Or the combination of pathos and love in our efforts to pay his bills together.

These are the moments that become the memories which sustain us through the grieving process after our parents are gone. These memories will survive far longer than the sting of a sharp word. But we can only see them if we are in the present, not fretting about or dwelling on the past, or obsessing on the imagined future.

Sometimes these moments happen when we least expect them.

Each time I visited my father, we began the same way.

“Is there anything you need me to do, Dad?” I would ask. Usually my help involved a shopping trip to the mall. On this particular day, the request was very different.

“I don’t think so,” he said. And then, a long minute later: “I do have a request of you that I’ve been too embarrassed to make.”

“Oh,” I said, a little taken aback. “What is it?”

“I would like you to cut my toe nails. I can’t bend over to reach them anymore, and they’re getting uncomfortably long.”

“Where do you want me to do that?” I asked, trying to hide my unease.

“In the bathroom,” he said. “In the middle of the night, when I wasn’t sleeping, I amused myself with deciding that I would soak my feet while sitting on the bath seat.”

He preceded me to the bathroom to prepare himself. When he called my name, I joined him. I don’t think I had never been in the bathroom at the same time as my father.

When I walked in, he was sitting on the edge of the bathtub, his feet resting on a large brown towel. His grey cotton pant legs were rolled up above his knees to reveal dozens of purple and blue bruises on intensely veined thin white legs.

“Do you need anything else, Dad?”

“Bring me a bowl of water. You can use the dishpan under the sink. It’s not getting much use these days.”

I returned with the square brown plastic dish pan, which I proceeded to fill with warm soapy water. I set it down on the bathmat in front of him.

“Here you go, Dad,” I said. “Just like Madge.” The Palmolive woman from TV. “You’re soaking in it,” Madge would tell the customers in her upscale salon who always responded in horror to learn they were soaking their hands in dish detergent.

“How would you like me to do this, Dad?” I asked when he had finished soaking his feet.

“However you like,” he directed. “The nail clippers are there on the sink.”

I picked up the set of nail clippers and inspected his foot.

“Where do you want me to start, Dad?”

“Your choice.”

Some choice, I thought. The big toes were enormous and terrifying. The nails must have been an inch thick and hard and yellowed despite his efforts at soaking. I wondered how long it had been since he’d had his nails cut. I didn’t ask. I chose the baby toe. I began by facing him but soon discovered that the angle was too awkward. I moved my body between his legs, resting one arm on his leg. It felt strangely intimate. I proceeded, toe by toe, cutting and shaping, trying my best not to cut him. Left foot, then right. One toe at a time.

“Well, Dad,” I said, moving towards the door to inspect my handiwork. “I think we’re done. How do you like them?”

“Perfect,” he said. Then, not missing a beat, he added, “Do you paint toenails as well?”

All these years later, I still smile as I remember my father’s wry humour, relieving any discomfort I might have felt. It was his own particular, understated humour that I miss and cherish all at once.


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I first wrote this post at the Virginia Center for the Creative Arts. It’s a year later now, and I am back in Virginia, writing about caregiving, end of life issues, and – yes – dignity.

Much has changed in the past year. We elected a new government – one that is committed to working with the provinces, to reforming health care, to providing more palliative care and support for caregivers in the home.

At the provincial level (I live in Ontario), we’ve seen a commitment to build up to 20 new residential hospices, to provide additional funds for existing hospices, and to increase support for caregivers. These are important initiatives and I look forward to seeing them implemented.

At the same time, however, there has been very little discussion about what hospice palliative care is – what it looks like, what it means for families and for patients who are reaching the end of their lives. There has been little discussion about what we want and need at the end of our own lives.

I hope that readers of this blog will take up the call to talk with your friends and family, your neighbours and workmates, about the kind of care we need and deserve. I hope you will talk about dignity and what it means to provide loving, respectful, dignified care for the people you love. These issues go to the very heart of what it means to be human. Please join me in this vital conversation.

Hospice Volunteering

I’ve been thinking (and writing) a lot about dignity in the past couple of weeks – what it means and how the notion of dignity has been largely appropriated by the “right to die” movement. Organizations with names like “Dying with Dignity” and “Compassion and Choices” seem to suggest that the only dignified way to die is with the assistance of a physician (whether through lethal injection or the provision of a lethal dose of medication).

Yet, dignity and compassion have been core values of the hospice movement since Cicely Saunders opened the first modern hospice in 1967 and remain central to our work in hospice palliative care today. Compassion lies at the heart of how we deal with patients and their families. And the preservation of a patient’s dignity, integrity, and respect are central to how we care for each person who enters the hospice program, whether in their…

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Despite my best intentions, I didn’t manage to post anything new in December. Lest you think I was lost in a shopping mall or drowning my sorrows in red wine, I can assure you I was enjoying my favourite pastimes – a trip on a train with my partner, daughter, and granddaughter to see a friend’s photo show in Toronto (and visit the aquarium with my younger daughter and her partner); precious time with friends;  a drum-making workshop wherein I actually managed to make a real drum; Tuesday afternoons at the hospice; being silly with my grandchildren; watching non-seasonal programs on Netflix; completing an end-of year reflection.

I suspect this brand new year will see me engaged in many of the same activities – and hopefully some I’ve never undertaken before. Passing that magic marker of 65 seems to have given me permission to be as zany and silly and experimental as I want (although my granddaughter regularly chastises me with “Don’t be silly Granny!”) I can talk with strangers at Starbucks and on the street, without fearing that my daughters will accuse me of “over-sharing.” I can sing as often and as loudly as I wish in my house – accompanied by my ukulele if I want! And of course, when the spirit moves me, I can write.

I’m hoping to write regularly again, having spend the past few months marketing my book. In this new year, I want to continue to give talks on caregiving, aging, death, and dying – and hopefully to travel with the book. But I’ll also return to my desk on a more regular basis, to blog, to write articles on subjects close to my heart, and, perhaps, to work on another book.

I hope that the new year brings much joy, caring, and compassion to all of you. I look forward to connecting with you in 2016.



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When I was in the volunteer training course 14 years ago, we were taught that it was strictly forbidden to ever talk about our own experiences with the death of a family member. Since a great many people come to hospice volunteer after the death of someone they love, it was (and is) wise advice. For the same reason, we were (in my day) not allowed to take the course until at least a year had elapsed since a death in our lives. That period is now two years and it is designed to ensure that the prospective volunteer has time to come to terms with their own loss, before spending time with dying people and their families.

I began volunteering four years after my sister died, and, for the most part, I had no difficulty adhering to the prohibition about remaining silent about what had brought me to hospice. Understandably, both families and the patients themselves are focussed on their own situation and my intruding with my own story would be an unnecessary and unhelpful distraction from their own lives.

Occasionally, though, someone would ask me why I had started volunteering in the hospice. And as the years have worn on, that question has become more and more common. In part, it’s the corollary to my answer to their question, “How long have you been volunteering here?”  When I tell them I’ve been at hospice 14 years, they look at me in amazement, as if trying to imagine what would keep someone there for so long.

“What brought you here?” people increasingly ask me.

Each time I pause, remembering the rule against talking about ourselves. But increasingly I find myself telling the truth.

“My sister died many years ago, and I was one of her primary caregivers,” I say.

Sometimes they ask me if my sister died at the hospice. “No,” I say. “Not here. In Toronto.”

They rarely ask me anything else. Often they will tell me it must be a wonderful place to volunteer.

“It’s great to know that I can make a difference in people’s lives,” I say, as I set about to make another pot of coffee or load the dishwasher. (These conversations almost always happen in the kitchen, a place of brief refuge for family members before they return to their loved one’s bedside.)

I rarely talk about these conversations. I suspect they are still against the rules. And yet, I have come to feel that providing an honest answer can be very reassuring to people in this midst of one of the hardest experiences of their lives. My honest answer tells them that I have survived the loss of someone I loved deeply and that they can too. My answer tells them that something valuable can come from all this suffering. My answer tells them that I am the “real deal” – a person who has experienced death first hand. In some measure, I “get” what they are going through. And in some way that makes me safe.

I wonder how other volunteers deal with these questions. We don’t often have the chance to talk about such things. In my first few years, I was always buddied with another volunteer and we would sometimes talk as we went about our work. But now I work alone. Our meetings are taken up with other issues – and besides, I’ve always harboured a fear that I might be “fired” if I admitted to my honesty.

In the end, I look upon these moments as tender exchanges between human beings – human beings with feelings, I think I called us, a few posts ago. I am who I am at hospice because of my experiences with death and dying. As my sister used to say, “you’re going to be an expert at this by the time you’re done with me!” I’m not an expert at death, of course, nor do I want to be. I want to be a caring, compassionate human being, reaching out to help people at this difficult, transformative time in their lives. I wouldn’t have it any other way.

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A piece I wrote about my sister Carol was excerpted in The Caregiver’s Voice today.
Here’s the link:

I’ve written lots of blog posts in the past few days – alas, all in my head, as I’ve been caring for my sweet little grandson who is under the weather (with a fever! in this heat!)

More to come soon….

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I can’t help sharing my excitement! My book on caring for our parents is done and available on Amazon.com.

I hope it will be up on Amazon.ca, Chapters etc. soon.
Meanwhile, if you live in Ottawa, you can buy the book directly from me!

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A piece I wrote several years ago was just published in the online journal Hektoen International.

Here’s the link.


Let me know what you think!




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