It’s been more than a month since I last posted here! Had I known that was going to happen, I might have posted a “on hiatus” message, as some bloggers do. But the fact is, I didn’t know I needed a break. When I left for Provincetown for my annual writing trip in early June, I carried many boxes of writing along with me, certain I would blog, edit, and write up a storm. As it turned out, that wasn’t meant to be.
As we hospice volunteers know all too well, life happens. And so does death.
In early May, the husband of a close friend was diagnosed with terminal liver cancer. To say it turned their lives upside down would be an understatement. I was called upon to offer guidance, support, and advice about what things might look like and where they could turn for help. On a daily basis, my friend and I checked in with medical updates and the rapidly changing plans.
I’m certain I’m not the only hospice volunteer who is called upon to help a friend or relative deal with end of life care. Though most of us are not doctors or nurses, we have experienced death in our own lives and in the hospice work we do. We are able to offer counsel, support and understanding at a time when those things may be in short supply. Many days I found myself saying, “I’m not sure what will happen, but it’s likely that …”
“This is really hard,” I would tell my friend, as I do families and patients at hospice. I’ve found it to be the most reassuring thing I can say – it acknowledges the suffering they are experiencing, without judgement or attempting to fix anything. There are not “solutions” at this point in life, and support and comfort mean so much.
Three weeks after his diagnosis, my friend’s husband died – peacefully – in palliative care in the small town hospital near their rural home. In the days after his death, I was able (along with many other friends) to talk with her about the myriad decisions she faced, and to encourage her to do what felt best to her – not what others might think she should do.
I am grateful, as always, to my sister for the lessons she taught me as she was dying. And I am so glad I’m able to offer what I can to friends, family, and the people at hospice.
What I need to remember, though, is that sometimes this work takes a toll on me. I’m hesitant to even say that, because the toll is so much greater for the people experiencing the loss of someone they love.
Nonetheless, I too need replenishment (much as I might deny it!). As so often happens with me, it took my getting sick about a week after the funeral to realize that maybe, just maybe I needed to rest! (I blamed germs passed on from my grandchildren and that’s probably true, but I was definitely susceptible.) I cancelled commitments – including, alas, meeting the Governor General – all except the Conference where I was speaking about caregiving! (Yes, I’m aware of the irony of that!) By the time I arrived in Provincetown a couple of days later, I still needed to rest. And, it turned out, change the channel.
I walked along the beach, I read voraciously, attended movies at the film festival, and talked to people – often about their experiences of caring for their parents, as I sold books out of my backpack.
Sometimes I would berate myself for not writing much of anything – yes I am a hard task master! – but mostly I recognized that what I needed was time “off” – something we all need in our lives as caregivers, volunteers, and giving people.
I’m back home now – enjoying the sunshine and cool breeze streaming into my bedroom window – listening to the soundtrack from Departures (an amazing movie if you haven’t seen it!) and so happy to be writing a blog post.
Happy summer!
Hi Katherine
I found your latest posting to be very interesting and timely. The volunteers at our hospice have been bringing up the topic of “stress and burnout” quite frequently lately. We constantly share thoughts and ideas regarding coping techniques.
It is something that we are all susceptible to as members of the palliative care team. In the 5 years that I have been volunteering I have experienced one major and several minor burnout situations.
I learned so much from the first “major” burnout (I had to take a 2 month leave) that I am much better at recognizing potential stress managing actual stress. It still hurts, but I handle my emotions much better.
I suppose it is like the lifetime process of grief that survivors experience. The pain is always there, but one’s rebound time improves with time and experience.
Thank you so much Katherine for sharing your thoughts. It is comforting to know that even people who have been in palliative care for a long time share similar experiences. Your words bring comfort.
Have a great summer.
– Michael
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Thanks, Michael. I think it’s important for hospice volunteers (and staff) to have ways that they can talk with one another about their losses, without, of course, breaching confidentiality. All the best to you, Katherine
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