Latest / Behind The Village Podcast / Grief Starts at Diagnosis, Not at Death | Amy Pritzker & Terri Gortnar

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Grief Starts at Diagnosis, Not at Death | Amy Pritzker & Terri Gortnar · Behind The Village Podcast

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You're listening to the Behind the Village podcast,
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where we invite you to join us on a journey to
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understand how to live a life worth living. Today
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I'm joined by two guests, Amy Pritzker, the Education
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and Curriculum Development Coordinator at Hospice
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Simcoe, and Terry, who you'll be familiar with
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from our previous episodes. Together we talk
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about what hospice really is, why saying the
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word death doesn't bring it any closer, and what
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it means to truly show up for someone who is
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grieving. A gentle note before we begin. Today's
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episode includes a conversation about the loss
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of Terry's daughter, Claire, and the future passing
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of her son, Joseph. We do not go into detail
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of Claire's passing, but do touch on the supports
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Terry needed and currently needs as she moves
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through this stage of life. Let's begin. My name
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is Amy Pritzker, and I am an employee at Hospice
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Simcoe in Barrie. I'm previously a clinical coach
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working in the community and my role is transitioning.
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So I'm an education and curriculum development
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coordinator at hospice. So I've been in hospice
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palliative care for 15 years now. Essentially,
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hospice started out in the 60s, the modern day
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hospice movement. And it came from Dame Cicely
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Saunders. She was a nurse slash social worker
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slash physician who worked at St. Christopher's
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Hospice in the UK. And her work came about because
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she was working with folks who were dying and
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realized that while they were being treated for
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their illness, people had forgotten that they
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were human beings. So they were being referred
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to as diseases rather than and their conditions
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rather than by their names and who they were
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as individuals. And so she really kind of coined
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this phrase of. The whole of total pain. So looking
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at the physical and the spiritual and the emotional
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and the relational pain that goes along with
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illness and dying. And this was kind of happening
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at the same time as Elizabeth Kubler -Ross was
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working in the States and doing some research
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with folks who were dying. And she, her research
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indicated that, and this was her original research.
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So people abused Kubler -Ross with grief. And
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it really, her original research was around.
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the dying experience of folks. And what she found
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was that in the United States and in our Western
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culture, we'd really relegated dying to the hospitals
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and institutions. And what the major point of
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pain was for folks wasn't their physical pain,
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but was that sense of isolation from community.
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So the modern day hospice movement is kind of
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this marriage of the two, realizing that pain
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is not necessarily physical. only, but it's really
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that whole sense of I am still a person to the
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moment that I die. And so this whole experience
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of dying is going to be just as intentional and
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individual as my life has been. But somehow in
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that process of medicalization, we become a number
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or we become a disease or a condition and we
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lose those relationships and that sense of meaning
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that has fostered us and carried us through our
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entire lives. So hospice palliative care, we
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use as a total term, but hospice in general is
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about that whole sense of wrapping our arms around
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folks and providing them with support, whether
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it's the pain management in terms of physical
3:35
pain, but also that spiritual pain, that relational
3:40
sense of isolation, and just realizing that The
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whole family is in pain at that point in time,
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that whole care and community. And we want to
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just wrap our arms around them and care for them.
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And our whole goal is to walk alongside with
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and provide shelter for folks during that storm
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in life. That's beautiful. Yeah. I don't even
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think I realized how holistic hospice is. So
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why hospice for you? What drew you to this sector?
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I think when we talk about intergenerational,
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stuff or trauma. I would say that all of us have
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a legacy of grief in our lives. And for me, the
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legacy of my grief story really started with
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my grandparents, not even with me. So my grandmother,
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her mother died when my grandmother was four.
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So she was motherless as a kid in the early 1900s.
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And that shaped her life, that there was always
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this kind of sense of being different, of not
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belonging, of not being understood in her grief
4:49
experience. And then my other grandmother was
4:54
widowed in her 40s. So my father's dad died when
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my father was 16. And that changed the trajectory
5:02
of his life. That changed the trajectory of my
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Nana's life and her experience. And so I think
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grief for me has just always been embedded in
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this story of my family and how we perceived
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it. and saw life. It wasn't, we never kind of
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took it for granted that everyone lives forever.
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There was always that kind of sense of sadness
5:25
even and something missing because of these losses
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that had come before I was even born. So when
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I look at hospice, I think that that sense of
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the fragility of life has always been with me.
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And I also think that I have a strong sense of
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community. Like, I just think that we do better
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when we go together. And so for me, hospice has
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really been this perfect intersection of meaning
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or, you know, existentialism, that whole sense
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of what is meaningful and purposeful in life,
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that sense of community, and this other piece
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which comes from facing. hard things which is
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transformation that i really believe that this
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is a kind of a the when the rubber hits the road
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and we become we have a choice of becoming our
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best selves or are not so great selves in that
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those moments um like when you face death every
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day when you kind of have a sense that this is
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not all there is all right like you know that
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there's an end to the date that we have, it brings
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clarity. And for me, that's when really great
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conversations happen. That's when people start
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living an intentional life. That's when we start
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waking up to what this human experience is about.
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And we can truly start being there for each other
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in our authentic, you know, purposeful, beautiful
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ways. Absolutely. Because it is, as you mentioned,
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too, it's the thing that we all have in common.
7:06
We have two things that you mentioned we have
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in common. Yep. Birth and death. Those are the
7:12
two things that we have in common. And we had
7:14
this conversation offline that there are two
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things that human beings have in common. The
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two only things that we have in common is that
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everybody will be born and everybody will die.
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And so for all the differences that we have,
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those are the two things that we share. And in
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this dying experience, if we lean in, this can
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be a thing that unites us and can bring healing.
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We see really beautiful healing moments. And
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it also is the time when sometimes things come
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to light that we've been pushing down for a really
7:50
long time. So it's a really powerful time to
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be working with folks. It's a really honoring
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and privileged time to work with folks. We see
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here so many beautiful stories. And yeah, I just
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feel like I've been really blessed and privileged
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to be able to work alongside of some of the most
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amazing folks to learn from people as they've
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transitioned into in this grief world and grown.
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And also for watching people take their last
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breaths and to make that final journey or do
8:27
that final thing, their final act in this thing
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called life. I wanted to ask too about, you mentioned
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a few different aspects of this for you, but
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the spirituality aspect, and maybe if you're
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open to sharing what that is for you. Yeah, for
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me, spirituality has more to do with meaning
8:46
and purpose and the connection that we have to
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something other than ourselves. And I think that
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that's the invitation for hospice palliative
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care. Whatever your faith tradition, whatever
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you align with, your belief system, I think there's
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no denying at the point of death and dying. that
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there is mystery, that there are things that
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we don't know, that there are things that happen
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that I could never put a rhyme or reason to.
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And so that for me has been part of the most
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meaningful thing is that that's that piece of
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connection, not just to the universe and to that,
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but also to ourselves and to others. That connection
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that takes us out of ourselves, that we are the
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only beings on the planet, that our stories starts
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and ends with us. As I mentioned, you know, it's
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really that linkage to the past, to the present
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and to the future. And so for us, a lot of times
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that looks like legacy. What did my story mean?
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What do I want to leave for generations to come?
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What have I learned from this? unique experience
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i've had on this planet that's that's our what
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grounds us is our own sense of mystery and our
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own connection to community because if we didn't
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have that we wouldn't be able to hold space for
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other peoples so yeah i think that that's for
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me what spirituality is really about is how do
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i stay rooted in there's more yeah jumping into
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more the logistics of of what you do kind of
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day -to -day what does that look like how do
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you support people and families? In terms of
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hospice, Simcoe. So again, every community has
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their own hospice. Ours, we have three different
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locations. We have the residential hospice, which
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most people are familiar with in Barrie and outlying
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areas. There we have 10 beds and it's staffed.
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We have full -time round -the -clock nursing.
10:55
We have physicians that come and go. It's really
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a beautiful location. So a lot of times people,
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when I first walked into the hospice, I was expecting
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what I saw in a lot of hospitals, which was either
11:07
glaring lights or really dark hallways. And it's
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just a really beautiful facility. It's well lit.
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There's flowers. There's, you know. Quilts hanging
11:17
on the walls. And there's this big, huge kitchen
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where people gather around the table and talk,
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drink tea and coffee and a whole bunch of treats
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that volunteers make for them. And so a lot of
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magic happens in the residential facility. But
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we are so much more than that. So we also have
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a facility that is on Bell Farm Road. And that's
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our community support services. And there we
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have a team of social workers. We have five social
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workers who provide pre -death care. So we have
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a visiting volunteer program where folks are
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volunteers who have extensive screening and training,
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are matched with people in the community to provide
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some respite for caregivers, but also so that
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people do that thing. that we talked about at
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the beginning where they stay connected to community,
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where they get to tell their story to someone
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who isn't afraid to sit with somebody who might
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be ill or dying and who's, you know, familiar
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enough with the system to not freak out about
12:21
some of the injustices or whatever they see.
12:25
And they actually are just really lovely companions
12:29
along the journey. That's where we started. And
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we would be remiss to not. say just how powerful
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that program is for folks. The average length
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of stay for the residential hospice is about
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10 days. We know that when people are ill, they're
12:46
living with an illness for years sometimes. They're
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living with this disease or this condition for
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a very long time. And so hospice is not just
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those 10 days. We can also, that are one of the
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things that kind of is a A question we ask a
13:06
screener is that, would you be surprised if this
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person died within the next year? And if that
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question is, nope, I wouldn't be surprised, then
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they are a perfect candidate for getting linked
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to our palliative care program or our hospice,
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just in terms of even receiving information about
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what services exist in the community for them.
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And a lot of people come to us after in the bereavement
13:29
program and they are like, why did I not know
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that hospice existed? Why did no one tell me
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about this? The root problem is that we don't
13:38
want to talk about death and dying. We don't
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want to actually say the D word because we feel
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like we're going to cause it. I don't think people
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realize that when you've been diagnosed with
13:48
something, you're not running a sprint, you're
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running a marathon. And it's... You need to take
13:54
any kind of support that's being offered to you
13:57
when it's being offered because it may not be
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offered again. This resonates with me so, so
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much. Especially in the pediatric community,
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parents just cannot even say the word palliative.
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And we had been involved with palliative care
14:14
since their diagnosis. And it was never because
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we knew they were going to die tomorrow. We knew
14:21
it was a marathon. It could be. five ten years
14:24
but there's still going to be an end date and
14:29
let's make like all those moments count like
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let's make their quality of life be amazing until
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the end and I want to know everything I can to
14:40
do that as a mom and I see a lot of people just
14:44
in denial And not taking advantage of that and
14:49
then just really struggling and missing out on
14:52
those moments. And so when like Michaela and
14:54
I were talking about this podcast, it was just
14:57
like, I want to tell this story. I want people
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to know like this does not mean saying death
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means they're going to die tomorrow. Like you
15:07
do have a window where you knew. I think I knew
15:10
like four months before my daughter passed. it
15:15
was getting closer and things were changing.
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But until that, I had her diagnosed since she
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was four. She passed at nine. I didn't just sit
15:24
there and wait for it to happen. And so, yeah,
15:28
I just, I really love that. I want people to
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know, like, saying it doesn't bring it. And having
15:35
all those resources just makes every moment count.
15:39
And like you said, you're not hovering. You're
15:41
there when you need them. What has the impact
15:44
been like for you, Terry, with having hospice
15:47
involved for so long? Well, I didn't have actually
15:52
hospice involved, but I had palliative care through
15:55
the Sick Kids Hospital in Toronto. And it was
15:59
the only thing that got me through because you
16:02
feel very alone in this. Not everyone's going
16:05
to understand that, you know. People get weird
16:09
around you. They're not sure how to talk to you.
16:12
And then I just, I didn't want to be that person.
16:16
Like, how do I explain to people how they can
16:19
talk to me, how they can support me? I had to
16:22
learn how to ask for help, which is really, really
16:25
hard. Not just saying, you know, come by when
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you can. Or, you know, when people say, let me
16:33
know what you need, like, speak up. I would like
16:36
a meal tomorrow. Do you mind dropping by and
16:38
doing my laundry? You know, just being just more
16:42
forthcoming with my needs. And like the palliative
16:46
care team gave me the confidence to say that
16:49
so that I could use my time to be with my children.
16:54
And it also gave my friends and my family. something
16:58
to do and it made them feel better to be able
17:02
to be involved because they feel so helpless
17:04
when they see that your child and what you are
17:07
going through but if you are giving them a task
17:10
then all of a sudden you've got this community
17:12
around you yes and that's really the bulk of
17:17
hospice is about compassionate communities and
17:21
when we think about that that's not just the
17:22
hospice volunteers but we do a lot of grief education
17:25
we want to really go out and educate their friends
17:28
how to be compassionate friends to them. That
17:32
we can give people the tools to say, you know
17:34
what, I've got this. I'm going to drop off a
17:38
meal for you. You don't have to come outside.
17:41
And they have the confidence that even if they
17:43
say the wrong thing, they still showed up. And
17:46
that's the piece where I think most of the folks
17:48
that I've worked with in bereavement would say,
17:50
it's not what people said that hurt. They were
17:54
well -meaning. And even if they said something
17:56
stupid, I can forgive them for that. The people
17:59
I have a hard time forgiving are the people who
18:01
didn't show up. They were too scared to actually
18:05
step into this experience with us. Exactly. Terry,
18:10
that is so beautiful what you just said and so
18:12
on point. And I think that's what our goal is
18:15
from the community services is that how do we
18:17
link the palliative care. So I just want to do
18:20
a delineation is palliative care. was started
18:24
in Montreal by Balfour Mount. And it really was
18:29
his approach. He was a physician in the hospital.
18:32
And where Cicely Saunders and Kubler -Ross were
18:36
looking at the community, how does the community
18:38
step in and support folks? He was looking at
18:41
how do our healthcare providers do this better?
18:44
Because we're not even talking about death and
18:46
dying. We're not even, and you can hear that
18:49
in physicians' language, right? Is that there's
18:51
nothing more we can do for you. And it's like,
18:54
that's not true at all. As Terry just mentioned,
18:58
there are moments. There are moments that we
19:01
can make full of life and full of living. And
19:04
those are the moments that a lot can happen.
19:08
That's where the magic really starts. And so
19:12
anyway, so Balfour Mount really launched this
19:14
whole thing. He didn't want it to be associated
19:17
with, I don't know, I think hospice had been
19:20
associated with death at that point in time.
19:22
So even he had a bit of a... death and dying
19:24
phobia or whatever. And so he coined the phrase
19:29
palliative care. And so palliative care and hospice
19:32
eventually in 2010 and Ontario kind of merged
19:36
and said, no, we're both working towards this
19:40
whole thing together, but coming from different
19:43
lenses. So the PAC team very much is a medical
19:46
team that embraces social workers and nurses
19:49
and a whole bunch of folks to help parents. Hospice
19:54
is a little bit more about, again, folks from
19:56
the community being trained as volunteers to
19:58
walk alongside of people. And both, I think,
20:01
are so valuable. And that piece, like you said,
20:04
that education piece, because it's 100 percent
20:07
right. And I feel that way, too, is like I I
20:09
wouldn't even know how to help, like how to like
20:12
I'm afraid to say the wrong thing, to do the
20:14
wrong thing, to make a call that's going to be
20:16
more harmful in that like really vulnerable moment
20:19
for somebody, you know, and it's. if we were
20:22
more open about it, then I think that community
20:27
could step in. I'm finding now that with my son,
20:30
we know is going to pass next. He has the same
20:34
disease as my daughter, that people couldn't
20:37
handle going through the loss of my daughter,
20:41
that they have totally jumped out of our lives.
20:44
And so to find that community is so important.
20:51
Yeah. Yeah, and I've had folks where they've
20:55
lost a child in my, because we do offer bereavement
20:58
support groups at hospice and we have an adult
21:00
child loss group. And one of the most recent
21:03
things we've done is partner, well, we've amalgamated
21:07
with Season Center for Grieving Children. So
21:10
we haven't had, fortunately or unfortunately,
21:15
depending on viewpoints, we haven't had a...
21:19
a lot of folks who've experienced what Terry
21:21
has experienced in our area to form a group for
21:24
child loss in that capacity. But for my adult
21:28
child loss group, I can tell you that there have
21:31
been people who've been so wounded by the fact
21:33
that they've been walking along the sidewalk
21:36
and people have literally crossed the street
21:37
not to talk to them. Because mostly they're a
21:41
walking reminder of the worst thing that could
21:44
happen. And yet for Terry and for Terry's of
21:49
the world, What you've just done is created another
21:53
loss for them. And it's kind of like feeling
21:57
that you've been branded or have leprosy and
22:00
you're already carrying this huge wound and this
22:04
huge loss and you've just disappeared too. What
22:08
people need in grief and loss and illness is
22:11
connection. That's the thing that will sustain
22:14
them. And yeah, you will do some boneheaded things
22:18
and they might go off and say, that was stupid.
22:22
But, you know, when we know better, we can do
22:25
better. And that's why we want to get as much
22:28
information to folks as possible before any crisis
22:31
happens so that we can show up in those moments
22:34
when we need to. So at what point can people
22:38
reach out to hospice? As an example, let's say
22:42
I did want to know more or learn something, but
22:44
I'm not necessarily in that space. Can I reach
22:48
out and ask questions? Sure, there's no harm
22:51
in asking and we either will point you to the
22:53
right place or we can sit down with you. We are
22:57
doing a couple of really cool things. We're hoping
22:59
to do a lot more community outreach. We were
23:01
planning, we were doing that before then COVID
23:03
hit, we had to pivot. And that's when our bereavement
23:06
programs kind of went a little wild because all
23:11
of a sudden grief was on the radar. Not only
23:14
before, grief was kind of this private hidden
23:18
thing. But then all of a sudden we were all experiencing
23:21
this collective grief and this collective trauma
23:25
and people needed to name it. And so grief started
23:29
getting some airtime. But that meant that we
23:33
had to put some other things on pause. And part
23:36
of that was our community engagement and really
23:39
doing this community education. And that's our
23:41
hope is really to give people language. So we're
23:44
going to be doing some seminars and some workshops
23:46
for folks in the community. The other thing that
23:49
we are going to do and that we've been offering
23:52
is monthly here at the Bell Farm location, we
23:55
offer a drop in for folks where it's really an
23:59
open house about that. They have all the resources
24:01
there. My colleague and her team have done an
24:05
amazing job of having every brochure, every package
24:08
that you could think of about this illness trajectory
24:12
out and ready to talk to you about it. So there's
24:15
volunteers that man that or person that. And
24:19
then there's the social worker who's also there
24:21
to answer any questions. When we are diagnosed
24:24
with diabetes, we are asked to go to a clinic
24:28
where we have an education clinic being talked
24:31
about the disease and everything like that, how
24:33
to manage it. When people are invited to go into
24:36
the palliative care program, we have been very
24:39
remiss to say, this is what it means and these
24:42
are the resources that are available for you.
24:45
That's what we're trying to do through this open
24:47
house. clinic, is to really say you're not alone
24:52
in this. And yeah, it's overwhelming, but we're
24:56
going to walk with you. And our hope too is that
24:58
we want to make hospice less scary because information
25:03
is so powerful at any point of the journey. And
25:07
if we don't know, we'll point you to the people
25:10
who might. And that's the whole thing is connection,
25:13
connection, connection. So we have groups. We
25:16
have, you know, volunteers who support people
25:19
in one -to -one sessions. We do a lot of really
25:23
cool things that are, and we're just finalizing
25:27
our fall programming. Stay tuned for that. But
25:32
we also offer like peer support programs. We
25:34
have a book club. We have a writing group for
25:36
grief. We have a yoga for grief. We have meditation.
25:39
So a lot of things of coping strategies to help
25:42
people because people hear about these things
25:44
and like, you know, I want to go to yoga class.
25:46
But if I'm going to be the only one, yoga can
25:49
evoke some really strong emotions. And so to
25:52
be able to do it in a safe place where people
25:54
get grief and no grief. And if you start falling,
25:57
they're like, have at it. Go with it. It's such
26:01
a gift, right? And then the other thing that
26:05
we really offer that I think is just so cool
26:07
is we offer a Living Well program for folks who
26:10
are living with a life -limiting illness where
26:12
they can talk to other people who are going through
26:14
it. One of my friends, when she was in her final
26:17
year of life, one of her greatest pain points
26:20
was the fact that she felt so isolated because
26:22
she couldn't talk to someone who got it. And
26:25
so thankfully, I had a whole bunch of letters
26:28
that someone or a blog post that somebody had
26:30
written about their experience of dying. But
26:33
it's so cool to watch people get together and
26:37
talk about what's really on their minds without
26:39
thinking about freaking anybody else out and
26:43
worrying their caregivers or their family members.
26:45
And they laugh like nobody else's business. Half
26:50
of us who aren't involved with the program have
26:53
to leave the building so we can actually get
26:54
work done because it sounds like a party in there
26:57
each week. And at the same time, we have a caregiver
27:01
support group where the caregivers at the same
27:03
time meet together and can talk about what it's
27:06
like to care for someone who's living with a
27:09
life -limiting illness, what their fears, what
27:11
their worries are. And they get some support
27:13
and resources from each other and from the social
27:16
worker. And it's just really sacred time where
27:20
they don't have to worry about burdening their
27:22
person. They can say, this is really hard. This
27:26
isn't what I signed up for. Who am I going to
27:29
be when they're gone? And so having these spaces
27:34
where you can just truly talk about what you're
27:37
afraid of, what you're grieving, what has been
27:42
beautiful, what has been really challenging.
27:47
It's such a gift when you're going through these
27:49
kinds of experiences. And we're just so privileged
27:51
that we get to offer them to the community. I
27:54
love that so much because grief is not when they
27:57
pass. There's so many grieving moments as they're
28:03
going through this journey. And so it's not when
28:07
they pass. It's when they lose a skill or as
28:11
they... As a disease takes over their body, you
28:14
just, you're grieving another part, another part.
28:17
And if no one else has ever seen that or gone
28:23
through that, like no one would understand. They
28:25
just think you're going to feel grief when you
28:27
lose your child. But I'm like, no, I've been
28:29
feeling grief for five years. Like it almost
28:33
feels like a relief when she passed because it
28:36
was like she finally wasn't suffering. I didn't
28:40
feel comfortable saying that out loud for a long
28:44
time because I felt like I would be judged. But
28:48
I'm like, you haven't lived in my shoes. You
28:50
haven't gone through what I have gone through
28:52
because you were uncomfortable to be in that
28:55
space with me. But if you had been, you would
28:59
have seen that I have grieved her for so long.
29:03
I was already at that point. And I think that's,
29:07
I just. I just wish that even if you are not
29:12
experiencing a grief, but if you have a friend
29:15
who is or a family member, that you go and get
29:18
educated. Yeah. Because it'll only bring, like,
29:25
I don't know the word. It'll only help you feel
29:29
better about being part of this instead of backing
29:33
out and being afraid. Like, it gives you purpose.
29:38
Yeah, absolutely. And it's part of life, like
29:40
we talked about in the beginning, right? Like
29:42
this is going to be a universal experience for
29:46
everybody, you know, so it's so important that
29:50
we have this education. And I was curious too
29:53
for you, Terri, if you've made use of not necessarily
29:55
hospice, but those more supportive groups and
29:59
kind of what they've done for you. I've been
30:02
in bereavement groups for people that have lost
30:05
children. But as soon as I say I'm about to lose
30:10
another, I get the, oh, and then they're not
30:15
sure what to say. So I haven't felt quite found
30:20
my group yet. I mean, I get people who have lost
30:23
their children, but when I say I'm about to lose
30:25
another one, they're like, oh, we don't. I can't
30:29
imagine how that feels. That's not so helpful.
30:32
But I mean, also, I'm glad a lot of people don't
30:35
understand what this feels like. because I wouldn't
30:38
wish it on anyone. But yeah, I definitely take
30:42
advantage of the grief groups and people who
30:47
have lost children and finding that community.
30:50
And I definitely would love to get more involved
30:54
with hospice and being with those people in the
30:57
moment when they are ready to open for volunteers
31:00
because thankfully you guys are like stacked.
31:02
So that's amazing. Yeah. How many volunteers?
31:07
I think we have 180. And they do a whole bunch
31:10
of things from, like I've said, helping to facilitate
31:15
groups, to meeting with people in their homes,
31:19
baking things in the kitchen, sitting alongside
31:23
folks who are in the residence, doing reception
31:26
work, gardening. doing community education. There's
31:32
a whole range of programming that volunteers
31:36
can get linked into. And our hope, yeah, we are
31:40
stacked at the moment, but our hope is to actually
31:42
be really intentional about how we utilize people's
31:47
skill sets and so we can build and foster a really
31:50
strong team in the community. So Terry, when
31:54
you're ready and we're ready and that moment
31:56
exists. We're ready to have you. I am excited
32:01
to be involved with that. My heart has been so
32:05
drawn to this because I always knew from the
32:07
beginning that I wanted quality over quantity.
32:09
I didn't want her hooked up to the machines.
32:11
She was at home, did not see a hospital the last
32:14
two years of her life. And that was just so important
32:17
to me. And I did not have that information from
32:20
before. It was just in my heart. And thankfully,
32:23
my husband respected that. We were on the same
32:25
page. And I have zero regrets. And I just want
32:29
every parent or caregiver to feel that, like
32:33
no regrets. I love that. And there's books on
32:39
the regrets of the dying. There's books on the
32:41
regrets of caregivers. And I think the regrets
32:43
are the things, the would have, could have, should
32:45
have, are the things that we see people come
32:47
in to read and support about. And Dr. Ira Biok,
32:53
he talked about what does pain at the end of
32:56
life look like? And I can tell you about the
32:58
physical symptoms, but I think that one of the
33:00
biggest things are the relational loose ends.
33:05
Dr. Ira Bryock wrote a book a while ago, Dying
33:09
Well, I think it was called. And in it, he talked
33:10
about the five conversations we should be having
33:13
with folks before they die. And one of them is
33:16
thank you for all the gifts that your living
33:18
has brought to me. The other one is I forgive
33:21
you. The third one is will you forgive me? The
33:27
fourth one is I love you. And then the fifth
33:31
one is goodbye. And I think that when you think
33:37
about Terry and giving her someone a beautiful
33:40
end chapter is when also this concept of a good
33:46
death, what does a good death look like? And
33:48
I think a good death is really when your values
33:51
align with how it goes. So for some people, that
33:56
means, you know, I want to be sedated. I do not
33:59
want to feel a thing. I just want to be. you
34:02
know, lying there, surrounded by my family, you
34:05
can all say goodbye to me. For some people, that
34:07
means dying alone. And that, so it can often
34:11
be a conflict for family members whose values
34:14
and their needs or hopes are in conflict with
34:19
the person who's actually dying. And so this
34:22
is why conversations beforehand are so important,
34:25
because I've had so many people say to me, you
34:27
know, I missed it. I let them down because I
34:29
wasn't there when they died. And yet when I went
34:32
to a conference, And that question was posed
34:35
to us around our little small table. Is that,
34:39
would you rather die alone or who would you want
34:41
with you when you were dying? Every single person
34:44
said, I don't want anyone with me. I want to
34:46
die alone. So we make this assumption about what
34:52
a good death looks like from our perspective.
34:54
And that's our perspective. And just like living,
34:58
it's so subjective. And that's why we really
35:01
need to have some conversations. So Terry, you
35:05
said something earlier that I really wanted to
35:07
piggyback on. Grief is not just when someone
35:09
has died. I had someone when I was doing education
35:11
saying I've never experienced grief. And that's
35:14
because their perception of grief was that it
35:16
was always death. Grief is about any loss. And
35:22
that can be a loss of a dream or the way things
35:25
should have been. And so I imagine for Terry.
35:30
And for you and your husband and your family,
35:32
the moment you got the diagnosis was the moment
35:36
when grief really started. It might have been
35:38
even when you saw some of the symptoms before
35:40
the diagnosis. Oh, a hundred percent. Yeah. I
35:44
grieved what my life should have been. Yeah.
35:48
And what your daughter's life should have been
35:50
in terms of not having to be involved with sick
35:53
kids at all. Right. Terry, what did you find
35:56
the most helpful when you were really in the
35:59
thick of it? In terms of the community and what
36:02
people were able to step in and support you with?
36:06
It was just showing up, actually. Like, we couldn't
36:11
leave the house. She was hooked up to oxygen
36:14
for the last week. And it was just my best friend
36:17
camped in for a week. She just dropped her job
36:20
and moved into my house. My in -laws just left
36:24
and moved into my house. And it was just people
36:28
dropped off meals from the community just on
36:31
the door. And I had a bunch of frozen meals,
36:34
so I didn't even have to think about it. If I
36:37
was actually wanted to eat, there was food there.
36:39
But it really was just people not afraid to step
36:45
into that space and show up. Not sure what to
36:50
say, but to let me know that they were there.
36:53
That was it. I remember the only regret I have,
36:57
not the only regret. That's a strong word. But
37:01
one of the regrets I have in my pre -hospice
37:06
life is I was helping to lead some kind of group
37:12
at one point in time. One of the group members,
37:14
their grandfather died. And the other group leader,
37:18
I was talking to them. I'm like, you know, I
37:21
think we should go to the funeral. And the other
37:24
group member said to me, our leader said, no,
37:27
it's a private family time. We don't do that.
37:30
And I took their advice. And that was the end
37:34
of that relationship and the trust with that
37:37
person. And I think that we have to be careful
37:42
of the assumptions that we have because of the
37:44
story we have either culturally or that we've
37:47
inherited from society about what it looks like
37:50
to walk alongside of people. And we really value
37:53
privacy. But I wonder if that's just a cover
37:57
for like discomfort. I don't feel comfortable
38:01
going to a funeral, so I'm just going to honor
38:03
their privacy right now. You're going through
38:05
a hard time. I'm just going to give you some
38:06
space. Without asking first, do you need space
38:10
right now? Or, you know, I've got time. I'm just
38:13
going to drop in unless you say no. Like, consent,
38:18
yes. Making that decision for someone else, no.
38:24
And I think that's the piece that, yes, you know,
38:28
Terry wanted a whole bunch of people around,
38:29
needed that. Some people might decide not to.
38:32
That's not your choice. That's their choice to
38:36
make. And it's our thing to be comfortable with
38:40
being uncomfortable. Sometimes it's uncomfortable
38:43
for me to say, no, Amy, I don't want your help
38:44
because I really want to help. But I'm taking
38:48
the cue from them and dealing with my own stuff
38:51
when I walk outside that door. And then there's
38:55
also a time when I felt like I wanted to be surrounded
38:57
by people, but then there was a time when I was
38:59
like, okay, I just need to be alone. And communicating
39:04
that. And just like you said, just asking what
39:07
they need. That's it. That's really. And there
39:11
was a time when I just, a good month, I just
39:13
needed to be alone. I did not have the energy
39:15
to talk or eat or do anything. I had really shut
39:19
down. But I'm really glad that we had the grief
39:23
counselor from our VH that had come to talk.
39:26
Because the way I was grieving. was shutting
39:29
down my husband was in overdrive and we were
39:33
like butting heads because he felt like he was
39:36
doing everything and I was doing nothing and
39:39
then when we realized like there's gonna be a
39:41
time when you are doing nothing and I'm doing
39:42
everything and we just have to honor that and
39:46
so that's why I think it's so important to get
39:48
those resources because there's nothing that's
39:50
going to get you through this but you need to
39:52
hold your marriage strong or your partner or
39:55
whoever you have and everyone goes through this
39:59
so differently and you need to you need to know
40:04
what's out there and thank god we had this counselor
40:06
so that we got through this because i don't think
40:10
we would have and we need to know how we're going
40:13
to go through this because we're going to go
40:14
through it again you know and we're the only
40:16
ones who understand this and so we've always
40:19
said like we've got to keep our relationship
40:21
number one and we've been able to do that with
40:24
the resources through the community that have
40:27
been able to help us. And I think that's really,
40:30
really important is keeping, you know, whatever
40:34
support system you have in place together. I
40:39
think going back to the idea of fear and people
40:41
being uncomfortable and again, that none of us
40:44
talk about it, right? As a society, do you have
40:47
any insight or maybe some comfort in terms of
40:50
the process of passing? One of the most beautiful
40:53
resources that exist is Dr. Catherine Mannix.
40:56
She's in the UK. has done really beautiful work
41:00
around demystifying the dying process. And so
41:06
she wrote a book called With the End in Mind.
41:09
She also has a TED Talk that's really accessible
41:11
in 20 minutes or less. And she talks about what
41:15
her expectations and assumptions were about working
41:18
with death and dying and how her patients taught
41:22
her about death and dying. really was about.
41:25
And I think that for many people, again, we have
41:29
such a curative mindset in Western culture that
41:33
we have done great things with being able to
41:36
keep people alive for a very long time, not with
41:39
the best quality of life. And so death just seems,
41:44
even though it's the most natural thing in the
41:46
world, just like birth, we have made it so complicated.
41:50
And death, dying is not like what it looks like
41:52
on TV. Really, it looks like somebody's sleeping
41:56
longer. It really looks like them coming in and
42:00
out of consciousness. They might stop eating.
42:03
They might stop drinking, not wanting food, not
42:07
wanting drink. We have this thing of that food
42:09
is love. So we try and force people to eat, even
42:13
though it actually will do more harm to their
42:15
body at that point in time. Everything just starts
42:18
shutting down. And so there's a sound that might
42:22
come from them, you know, that breathing changes.
42:25
And again, that's not hurting them. It's just
42:27
not what we hear every day. So we assume that
42:30
they're in pain. But just like I don't notice
42:33
when I'm snoring at night, they don't notice
42:36
what's going on with them either. So dying is
42:40
not necessarily painful. The symptoms that come
42:43
along, the complications of dying, there might
42:45
be some pain with that, a disease, that type
42:48
of thing. But it's really the body shutting down,
42:51
the coloring, the noises, all of that. It's just
42:56
that people start to go inward and their world
42:59
becomes very, very small. But yeah, we don't
43:03
know about the mystery of what happens there.
43:05
But I just know that, again, a lot of it is just
43:11
being present with people when they're dying,
43:13
holding their hand, saying what you need to say,
43:18
those five conversations we talked about. Yeah,
43:21
just being with. And we do such a crappy job
43:24
in our society of being. There's nothing we can
43:29
do. Yeah, here's a great invitation to be in
43:34
this moment with this person. And this is what
43:39
it's all about, is being with each other, connecting
43:42
with each other. I think there's a couple of
43:44
resources I'd really like to point out for people.
43:47
One is, again, Dr. Catherine Mannix's book, With
43:53
the End in Mind. The other is... some work done
43:56
by Dr. Xian Xiao and Dr. Sammy Weinmaker, which
44:00
is called The Waiting Room Revolution. And it's
44:03
really a great tool for people who have been
44:06
diagnosed with a chronic disease with a terminal
44:08
phase or with a life -limiting illness to take
44:11
back some power over the process. So another
44:14
piece of this, and I think Terry will concur,
44:18
is... Sometimes when you start in with a medical
44:21
system, it feels like you're being a ping pong
44:23
ball, just kind of being balanced from one thing
44:25
to another. And this book and their work has
44:29
really given you, gives people some tools, some
44:31
questions, some things to think about, some guideposts
44:35
along the journey so that they can be the ones
44:38
in a little bit more control in the driver's
44:42
seat for what this looks like for them. And so
44:45
I really highly recommend that. That book, that
44:48
work. The other thing I would do is point people
44:50
to the Speak Up campaign and to really have some
44:54
advanced care planning conversations. Again,
44:57
most people do not know who would make life decisions
45:01
for them in a medical emergency if they were
45:04
unable to speak for themselves. They don't know
45:06
that there's actually a legal framework that
45:08
has a hierarchy already. And they may not like
45:12
who the government has decided is their substitute
45:15
decision maker. So really being aware of who
45:19
that is, having conversations with your decision
45:21
maker about what's important to you and with
45:24
your whole team. Because like I said, family
45:27
dynamics, it's really about and breakdown comes
45:30
down to a lack of communication. And if we don't
45:33
know what the person's values are, who's kind
45:35
of at the center of this, then that's just raw
45:38
for all of us doing these projection things of
45:40
like, well, this is important to me. Therefore,
45:42
it's the way we should go. So, yeah, advanced
45:45
care planning, having the conversations, talking
45:48
about death will not kill you. It will actually
45:51
be one of the greatest gifts that you can have.
45:53
I've had such rich conversations with folks and
45:56
my family about what's really meaningful to us.
45:58
We've had some biggest laughs, you know, in talking
46:02
about these things. And I'd much rather talk
46:04
about it when it's not a crisis than when we're
46:08
in the thick of things and emotions are really,
46:10
really high. Is there anything else you feel
46:13
like you wanted to add or touch on? I do want
46:17
to touch on what Season Center does. Season Center
46:19
originally is the place in Simcoe County for
46:25
grief support for grieving children. And it was
46:28
started over 30 years ago, I believe now. And
46:32
the executive director has quite the, or the
46:34
founder has quite the story for this. I will
46:37
let him share his story. What they offer are
46:41
groups for kids. And so, again, just as Terry
46:44
said, the power of groups for her. You imagine
46:48
being a kid where you're the only one who's in
46:51
the class who doesn't have a mom. But it's not
46:55
because of divorce or separation. It's because
46:57
of death. And what that experience is like. And
47:02
so for them to be able to process their grief
47:05
and the death story and all those things. And
47:09
all these changes with their peers and with their
47:12
buddies who are the group leaders is just so
47:14
cool. And the place they do it is so cool. There's
47:18
a room where they can, they call it the volcano
47:20
room. They just can wrestle and punch the walls
47:25
or do whatever they need to do to externalize
47:27
their feelings. There's art therapy or art as
47:31
therapy, as I should say. And yeah, it's just
47:34
so cool that they can use play and art. all kinds
47:39
of different things so that they can externalize
47:43
our grief. And if we as adults could do the same
47:45
thing, that'd be so cool. And so hopefully in
47:49
the future, somewhere, somehow that comes together
47:51
so that we know that we are just little kids.
47:55
All of us become eight -year -olds when we're
47:58
grieving. And one thing I wanted to say about
48:00
seasons I love so much is that they even group
48:03
them with the way the parents passed, whether
48:05
that be like suicide or overdose. And then I
48:10
can't imagine having to deal with the shame of
48:12
that, not being able to talk about how you lost
48:15
your parent, but then being able to be with another
48:18
group or another child, someone your age that
48:21
has gone through that. that would be like priceless
48:24
to have that support. So I love that the seasons
48:28
even like groups them together in those ways,
48:31
because that's what is happening in our community,
48:33
unfortunately. And so, and I see it a lot in
48:36
the caregiver community where they just can't
48:40
take anymore. And so I just, I really appreciate
48:45
how seasons really like dives in to make sure
48:48
that they're getting real like peer to peer support.
48:52
And I think about going back to my origin story
48:55
about what brought me to hospice is that my dad's
48:58
story might look a lot different if there had
49:01
been grief support for him as a 16 -year -old.
49:04
My Nana's story would have been a lot different
49:07
if she had community wrap around her and support
49:11
her as a single mom of two teenage boys. Now
49:18
that we know better, we can do better. And that's
49:20
all we want for area and area and for all of
49:22
us is that no one's left behind when they go
49:26
through this kind of devastating event. A big
49:34
thank you to Amy and Terry for sharing so openly.
49:36
My biggest takeaway from this conversation are
49:39
the incredible programs and supports for people
49:41
navigating hospice and palliative care. Also,
49:44
the idea that people who are grieving just need
49:46
their village to show up. So drop off a meal,
49:49
send a text. offer to take something off their
49:52
plate without expectation. It's also a great
49:55
reminder that grief doesn't only begin at death.
49:58
It can start at a diagnosis and continue through
50:01
many smaller losses along the way. How we move
50:04
through these difficult stages in life is different
50:06
person to person. Just know that there are people
50:09
who care about you and your well -being and that
50:12
there is support in our community for you and
50:14
your loved ones. Thank you for listening to the
50:17
entire episode. All the links and info you heard
50:19
in this conversation will be featured in the
50:21
show notes on our website. If you'd like to know
50:24
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