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Preface: I just reread my last post, written nearly a month ago. I love the optimism in the conclusion, my happiness at being home amidst all my fixed points. Alas, within a few days I had somehow suffered an injury that left me with a pulled piriformis muscle and a resulting pinching of my sciatic nerve. (I know, this is too much information for most of you!) The result has been intense pain such that I have rarely experienced (48 hours of labour outdoes it but that was long ago, and with an excellent result!) It’s given me a new perspective on pain, on how exhausting and debilitating it is – and yet how largely invisible pain is, and thus people can assume (wrongly!) that it’s no big deal.

Many times over the past weeks, I’ve thought about how people reacted to my sister’s pain – suggesting she might be exaggerating or even making it up. I remember the orderlies who demanded that she “scoot over” onto their gurney from her hospital bed. Riddled with tumours up and down her spine, she could barely move, let alone “scoot over” upon command.

My sciatic pain was nothing compared to hers, which is why I hesitated to write about it. But as a nurse I worked with yesterday at hospice said, “it’s certainly not a lot of fun.”

All that to say, I haven’t been sitting at my desk for a long time – hence my silence here.

As readers may remember, yesterday was the 20th anniversary of my sister Carol’s death. As the date approached, I’ve thought a lot about the impact of her death on my life, and about what it means to lose a sibling. So I will share some of those thoughts here.

I fully recognize that not all siblings are close, often separated as they are by geography, age and even generation, by life choices, and historic grievances tracing back to childhood. Though my sister and I had had a few low points in her relationship (especially when I became a hippie and frequently criticized her for taking a “straight job.” I was insufferable!) But once I came to my senses and returned to university to become a teacher myself, our bond grew closer and closer.

When our mother suffered a massive brain aneurysm, Carol and I promised we would care for one another when we were sick or in need of help. And I was able to fulfill my half of that bargain when her cancer (originally diagnosed in 1978) returned with an unstoppable force in January 1997.

As often happens when someone is seriously ill, we became closer than we had ever been. Spending hours together, watching videos and bad daytime TV, remembering our childhood antics, talking about hopes and dreams (and fears).

When she died on July 4, 1997, I was devastated. Even though we all knew the end was coming, we had focussed on the immediate – tests, blood transfusions, medications – anything to make her more comfortable. My days were taken up with helping her, organizing her care, and commuting back and forth between Toronto, where she lived, and Ottawa where my immediate family resided. And then, suddenly, all that was gone. After months of thinking about what Carol needed, I had no idea how to carry on.

One of my strongest memories from that period was my desire for some sort of visible sign of my loss. A black arm band, a long black dress (as worn by widows in the Portuguese and Italian communities where I had lived for many years) – something to indicate that I was in mourning.

Though friends and colleagues sent cards and flowers immediately after Carol’s death, soon enough (far too soon for me) they began to carry on as if nothing had happened. Yes, I had a brand new job as the Director of Women’s Studies, and there were responsibilities I had to fulfill. But I still needed consoling.

What I found so difficult was the silence. Perhaps people didn’t know what to say.  Perhaps they found my bereaved state frightening. I had certainly been in their shoes before Carol died.  But now I experienced first hand the impact of avoidance and silence.

One factor, I think, was that most people my age had not yet experienced the loss of a close contemporary, be it a friend or relative. I was only 47 and Carol, just 51. While most of us experienced our grandparents’ deaths, and some of us, parents, siblings were part of the fabric of our lives, people who knew us from the very beginning (or soon thereafter), people with whom we could still consider ourselves young and more or less invincible.

At hospice, I see many people who are faced with the death of a sibling. I can still vividly recall the first person – her sister was a teacher, as Carol had been, her career and life now cut short by cancer’s horrible force. Her sister brought in baked goods almost every time she visited, and she would share the lemon bread, blueberry muffins, and other treats with the staff and volunteers. It was something concrete she could do, when there was nothing she could do to prevent her sister from dying.

Though we are not supposed to talk about our personal lives, I told this woman that my sister had died four years before. We didn’t discuss details, only that I, like her, had been her caregiver. She thanked me for telling her about my loss, and I could see her shoulders relax as she realized that she was not the only one.

Several years later, I bumped into her on the street.

“You know what I tell people?” she told me. “I tell them that when I met you, and I could see that you had lost your sister and you were still standing, and volunteering even, I knew I would survive the loss of my sister too.”

After Carol died, I searched for books that might help me deal with my loss and grief. While there were many books on parental and spousal loss, I found virtually nothing about losing a sibling. It’s one of the reasons I started writing about Carol around the time that I took the hospice training. Not only did I want to honour her with my words, but I wanted to let others know that I understand what it means to lose someone who has known (and put up with) you your entire life.

The death of a sibling can leave a deep and abiding void in one’s life. There will never be another Carol in my life. But I am grateful beyond words for what she taught me. And for the ways she has enabled me to help others through their loss and grief.

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As anyone who knows me (and that includes readers of this blog, of course), I am not a person who believes that everything happens for a reason. Whether it’s a death, the loss of a close friend, a job, or a house, the onset of a serious illness – the list is long for the events for which some people are determined to find a “silver lining.” When my mother suffered a massive brain aneurysm, when my sister was diagnosed with terminal cancer, and on many other occasions in my life, well intentioned friends and acquaintances would attempt to console me with the thought that even these devastating events happened for a reason.

Most of the time I’ve managed to control myself enough not to lash out (or worse) at these people. Instead, I point out that terrible things rarely if ever happen for a reason. Rather, what matters is what we make of the situation – how we come to terms with it, how we respond, how we make meaning in our lives. Readers here will know that the experience of my sister’s death transformed me in ways I am still coming to understand. My ability to be with suffering and death, my passion for hospice palliative care, my commitment to helping others deal with illness and dying, all stem from caring for Carol when she was dying. So too do my meditation practice, my writing and speaking about caregiving, and my heightened intuitive sense of the suffering of others.

Carol’s death didn’t create these things, of course – nor are they the “reason” she died. But they are part of the meaning I found in the aftermath of losing her.

On July 4th, it will be the 20th anniversary of my sister’s death. I’m not sure yet how I will honour her  (though I do know I have a hospice shift that day, which seems like a fitting way to celebrate her!) No doubt, I’ll write something, as I have so often in the past 20 years. And I’ll remember, with enormous gratitude, all the things my big sister taught me in our 47 years together.

 

 

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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://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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Last Thursday, October 13th, was International Hospice Palliative Care day. And in Canada, this is national Hospice Palliative Care month. Each week, the Canadian Hospice Palliative Care Association is reminding us of the importance of talking about death and dying, advance care directives, and the need for access to hospice palliative care.

Last Friday, I gave a keynote address to the Bereavement Ontario Network at Geneva Park near Orillia. It was wonderful to have the change to talk about the history of death and dying and current and future trends in death, dying, and bereavement. (In case you were wondering where I had disappeared to, I was madly writing my talk right up until the deadline!)

Before I head off to my hospice shift today, I wanted to share this article, written by an Irish woman, about she and her family’s failure to talk to their mother about her impending death. It’s a great reminder to all of us to talk about what we and the people we love want at the end of our lives (and about the fact that death can happen at any time, not just many many years from now when we are very old!)

‘I regret not talking to my mother about her death, don’t do the same thing’

Talk to the people you love – your children, your parents, your siblings, your friends. Don’t wait until it’s too late!

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This letter, by writer Peter DeMarco, to the people who cared for his wife in her final days, reminds me of the quality of care we provide for dying people and their families in hospice.

http://www.nytimes.com/2016/10/06/well/live/a-letter-to-the-doctors-and-nurses-who-cared-for-my-wife.html?_r=0

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Yesterday, I had the opportunity to be part of the first annual Provincetown Book Festival. There were wonderful readings by poets, novelists, memoirists, and others, great discussions, and a book fair, where authors displayed and sold their books. Along with 14 other authors, I spent the beautiful sunny day sharing my work and selling and signing my book.

I was a little concerned that people in a vacation spot like Provincetown might not be interested in buying a book about caregiving, death and dying. What surprised me was how many people shared their own stories with me – deeply personal intimate stories of illness, caring for parents, and coming to terms with death.

Many of the people who approached my table shook their heads when I told them what the book was about – not because they weren’t interested, but because their parents were dead. “I cared for my parents into their nineties,” one woman said. “And we cared for my partner’s parents too. It was a long stretch.”

Not surprisingly, given the fact that daughters by far and away do the work of caregiving in comparison to sons, most of the people who stayed to talk with me were women. Now in their 60s, they were beginning to think about their own aging process, and who might care for them. “I better give that book to my kids,” one woman laughed. “It’ll be their turn soon.”

For those women who don’t have offspring to whom they can turn, the options may be more limited. Nieces (and nephews) may be willing to take up the task of caring for their aging aunts (and uncles) – but it’s likely they’ll have their own parents to worry about already.

As Baby Boomers, many of us are fiercely independent, and dread the thought of becoming a burden on our children or family members. I urge readers of my book to begin talking about these issues now, before it’s too late, and we find ourselves in a state of emergency. What heartened me about yesterday was how many people were more than willing to have these discussions – with one another, with other people who approached my table (and my fellow writers, and with me.

A couple of women who came by the table said that the topic of my book was just too close to home. Two women had recently been diagnosed with cancer, and were undergoing treatment. A stark reminder of how present cancer and other illnesses are in all our lives.

This willingness to talk openly about life and death is one of the reasons why I love being in Provincetown. Yes, lots of people are here to spend their days at the beach, before relaxing at the tea dances, restaurants, and bars, but many others still carry the memories and images of how AIDS devastated this town in the 80s and 90s. Provincetown has a higher proportion of people with HIV/AIDS than the rest of the country, and year round Provincetown residents work with and support the services that sustain people with HIV/AIDS. They are more than willing to share their stories with me over a glass of wine at the bar where I love to write.

Sometimes I worry that too many people have their heads buried in the sand when it comes to illness, death and dying (as in, if I don’t talk about it, it won’t get me!) Being able to have talks such as the ones I’ve had here in Provincetown give me hope that some people are embracing the opportunities to talk.

PS: The book fair got terrific coverage in the Cape Cod Sunday Times!

Here’s the link to the story:

http://www.capecodtimes.com/news/20160918/authors-drawn-to-provincetown-book-festival#ReaderReaction

 

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