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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.

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.

 

Eulogies

I just came across this fascinating article about eulogies – writing them, delivering them, and revisiting them years later. My father was the family eulogizer and I heard him deliver several during his lifetime. After his death, my sisters chose me as the one to write the eulogy – something I had done for my sister 8 years before. When my mother died a year after my father, once again I stepped up to the plate. 

I’m a writer so it makes sense that I should assume this role. But eulogies are without the most difficult pieces I’ve written. Many crumpled pieces of paper on the floor! Lots of hair pulling and tears. I’m proud of the eulogies I’ve delivered. But I’m in no hurry to deliver another one!

Check out this article from Modern Loss. 

http://modernloss.com/the-eulogist-navigating-grief-through-narrative/

pastoral-care-workshop-katherine-arnup

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.

I want to share the link to a fabulous article about the Zen Hospice in San Francisco and its amazing Executive Director, B J Miller. I had the chance to visit the hospice in 2005 and to spend time talking with one of the staff members about their approach. I will never forget our saying –  almost in unison –  that “dying is a spiritual activity.” We both smiled at the simple truth held in that phrase. Far too often in Western society, death has become a medical event, removed from life.

Read this story to the end – it’s enormously moving and for me, exemplifies what hospice care is all about.

 

December thoughts

I’m reblogging this post from two years ago as it captures so well my feelings at this time of year. As we age and inevitably lose so many of the people we love, these holiday times become all the more poignant and special. I am looking forward to spending time with my partner, my daughters and their partners, and my two amazing grandchildren who bring so much joy and silliness and laughter to Christmas – and every day.
My blessings to all of you and thank you for your continued support for this blog.

Hospice Volunteering

We’re halfway through December already and for those of us who can never seem to plan ahead, it becomes a time of long line-ups at Chapters, frantic searching for gift ideas, all accompanied by non-stop Christmas Muzak everywhere from gas stations to the post office.

Beneath all that noise and frenzy, December is also a time of memories. I’m sure I’ve written here before about my own memories at this time of year – the happy ones of decorating the tree, hanging up stockings, and opening up presents as a child – and the more recent memories of my children and now grandchildren. And then there are the memories of the people who are no longer here with us.

Today is my mother’s birthday – she would have been 96 today, had she not died nearly 8 years ago on December 27th. My Mom loved Christmas: she would spend most…

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