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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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It’s 2017, so they tell me, though I have been laid up in bed since late December with a nasty virus, and have trouble remembering which day of the week it is.

In a few days it will be 20 years since my sister Carol was diagnosed with the virulent cancer that would take her life 6 months later, on July 4, 1997. I had just begun a well deserved and much needed sabbatical and was busy making plans for a research trip when my sister called to say that the cancer was back.

“Fuck, Fuck, FUCK,” I said, when she told me.

“Don’t say that,” she said.

“But it’s just not fair! You’ve done so well! Fuck, fuck, fuck,” I said again, the only words that seemed to capture the extent of my anger and grief and shock.

“Don’t say that,” she said. “It just makes it harder for me.”

“OK,” I agreed. “I’ll be on the first train tomorrow to see you.”

And so it began. The 6 month “journey” in cancerland – through endless visits to doctors and hospitals, CT scans and MRIs, biopsies, and surgery. Vomiting and K-basins. Fear. And always pain. And finally death.

So many of the details of those six months are still vivid in my mind and my heart. The endless waiting for results, the parade of PSWs and “sitters.” Dozens upon dozens of phone calls on pay phones, in the days long before cell phones. And countless conversations with Carol about what she wanted and needed. I would have done anything I could have for her. And in the end it was never enough.

Shortly after she died, I began to tell people that I had been transformed by Carol’s death. I didn’t really know what it meant, but I knew it was true. I was no longer running away from death. Four years later, I would begin what became my 15 year journey as a hospice volunteer. “My sister works through me,” I would tell friends when I first began my volunteer work with dying people and their families. Sometimes I could almost hear her telling me, “Slow down. There’s nothing you have to do. Just listen to their stories.” And I did.

And I still do, all these 20 years later. I also write and talk and speak at conferences and churches and meeting halls. I look for opportunities to share my book about caring for my sister and my elderly parents, in hopes that I can help others who are facing this challenging time in their lives.

When I first began volunteering at hospice, friends would look at me strangely as I would wax eloquent about my volunteering. Some thought it morbid, others that I was courting depression in being with dying people week after week. Few would believe me when I told them my time at hospice was the most hopeful part of my week.

More often now, people ask me what I do at hospice – what it’s like giving care to dying people, and talking with their families. More and more, of course, friends and strangers alike have experienced the death of someone they love. Or they are watching their aging parents coming to terms with their loss of independence and failing health. Perhaps they have received a difficult diagnosis themselves. Now they too want to talk about death and dying.

And so I will continue to write, here and elsewhere, about life and death. I’ll read the latest books on the subject from the library, and watch movies about “d and d.” I’ll continue to give talks wherever I can,  and I’ll look forward to hearing other people’s stories.

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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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A piece I wrote about my sister Carol was excerpted in The Caregiver’s Voice today.
Here’s the link:
http://thecaregiversvoice.com/avadian-musings/we-will-remember-you/

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….
Katherine

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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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Last week, at a meeting of the Inter-professional Council of the hospice where I volunteer (and of which I am a member), the clinical care director began her report on recent events by introducing the term “families with a lot of love.” Such families were often referred to as “difficult” or “complicated” families in the past (not “dysfunctional” as that’s another type altogether) – I’m not a big fan of any of those terms to be honest, and I’ve been heard to say, many a time, “every family is complicated.” But I do like the term families with a lot of love. It’s used to denote families where there are many people who want to visit and accompany the resident who is dying. That can often mean there are a lot of people in the patient’s room – and sometimes in the sun room, kitchen, and other public areas of the hospice.

While it can sometimes make for a lot of activity – especially in the kitchen – I love seeing lots of family around. To a certain extent our role as volunteers shifts to engaging with family members rather than caring for the patient, but to me it is so wonderful to see families taking time off work, bringing the grandchildren to visit, and supporting one another as best they can, through the death of someone they all love. What of better way to leave this world, I think, than to feel the love of so many people.

The discussion made me think, once again, about the language we use (with one another and in our charting and other forms of communication). It’s all too easy to refer to one resident as a “sweet lady” or gentleman, while another becomes “particular,” “fussy,” or “demanding.” Similarly, a family that’s been through the wringer with their loved one’s cancer journey may well feel exhausted, frightened, even cantankerous. And finally we need to resist speculating about why a patient might have no family members visiting them. We really don’t know people’s stories or what happened to them before they arrived at the doors of the hospice. Most of us do a great job – but for me at least it’s always good to have a reminder to bring my non-judging self to my weekly shift (along with my beginner’s mind!)

 

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Though I doubt that anyone was waiting with bated for a new post from me, I didn’t want anyone to think that anything had happened to me (and given the year I’ve had, that would not be a surprising concern!) In fact, I took a much-needed break from reading, writing, researching and thinking about death and dying – by the ocean in Provincetown. I walked (a lot!), read poetry and fiction, wrote in my journal, attempted to draw, took photographs, visited art galleries, and talked to strangers at my favourite bar overlooking the bay. Now I’m back home, and enjoying the beautiful fall weather (though I have to remind myself each morning than it’s far too cold to wear shorts and sandals any more!)

In an hour or so, I’ll return to hospice, after a three-week absence. It’s likely that many of the people I spent time with will now have died and I’ll absorb that fact and honour their memories, even as I clean up the lunch dishes and figure out who needs what from me. Writing this post will help to remind me to enter my shift with “beginner’s mind,” something I’ve talked about before on this blog. Even if I do know some of the residents, no doubt their circumstances will have changed, and I shouldn’t assume that I “know” what they might need or want from me. I need to let go of my preconceptions, my need to “get on top of things,” to “do a good job,” and remember that being present is the most important quality I can bring to my work. Being present without judgment, assumptions, my own need to be of service or to make things better somehow.

Simply being, that’s what I’m called upon to do at hospice. And as I write this, I can see that my time in Provincetown was perfect preparation for my shift today.

I wanted to share a link with everyone to an article I read yesterday – a blog post by a hospital chaplain who is herself dealing with the second recurrence of cancer. A day later, I’m still thinking about what she has to say about “meaningful conversations.” I think many of you may find it instructive as well. As always, I’d love to hear your comments!

http://palliativeinpractice.org/2013/09/23/diagnosis-meaning-fatigue/

I wish you all a wonderful fall day (even if I am still shocked that it’s arrived so soon!)

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