Sue Collins, R.N. and Nancy Taylor Robson’s new nonfiction book, OK Now What? A Caregiver’s Guide To What Matters is
dedicated to friends, family, loved ones and caregivers past, present
and future. This book asks – What matters most when someone close to you
has been diagnosed as terminal? The authors explore ways people can
address the all-important time and quality of life issues for the
caregiver and the loved ones while coping with the practical and
emotional questions of this challenging passage.
Jan: Sue, what led you to become a hospice nurse and to continue in that role for 29 years?
I was working at a Nursing Home when they started one of the first
hospice programs in Baltimore in the early 80′s. I did not transfer to
hospice initially but I noticed the colleagues who did begin to change. I
wanted to know what was happening on the fourth floor. There was
something different about them, they seemed very content, happy and
enthused. Once I made the decision to work in hospice in 1985 I never
looked back. It is very gratifying to help people with the difficulties,
the decisions and validate their choices. They may not have a complete
understanding about what lies ahead but they have a better understanding
which makes this work satisfying knowing I was able to make a
difference in their lives
Jan: Nancy, as the author of
three other books on a variety of topics, what led you to become a
co-author on this book with Sue Collins?
I’m also a gardener, which gives you annual proof of the cycle of life,
the fact that life here is finite. That is one of the things that makes
it all so precious. But it’s also what can be so discouraging and begs
the question: If it’s all going to be gone sometime, what’s the point?
I get discouraged like everyone else, but also firmly believe that there
is something beyond this life. Hospice nurses usually do as well. Sue
and I immediately discovered we were on the same page spiritually, so
the idea of writing about how to walk that last piece here – difficult
though it may be at times — as well and as gracefully as possible
clicked between us. We each came to the project with different but
complementary skill sets, which also helped.
Jan: And tell readers about the title and the significance of the red bicycle.
bike implies transition and forward motion, but it doesn’t move on its
own. We need to get on and pedal; it’s up to us to use our energies, our
intent to keep it (and ourselves) going. The effort builds muscles,
both physical and emotional, and takes us out into the world.
About half way through writing the book, I became restless about a book
cover and title. One night I had a dream about a bike. Excited I called
Nancy. I love cool colors so I saw a teal ( my favorite color) bike.
Nancy, who enjoys the warm colors, said No it’s red! Immediately I knew
she was right, red felt right. I called a hospice friend and colleague, a
word smith, and we had fun and got a little silly ( because it helps
cope) putting the title together.
Jan: What parts of the book have readers found to be most useful?
I’ve had several people say to me that the explanation of what is
‘normal’ physically as the body is slowly shutting down is very helpful,
but that they most appreciated was hearing others’ stories that are
interspersed in the book. One reader said it was like having a
non-judgmental friend hold her hand through the whole process.
The stories. I believe it is easier to read stories then it is to read
about death and dying in clinical terms. Stories are real and people can
Jan: OK Now What? presents a straightforward account of the difficult personal reality for caregivers and families of terminally ill people. How
do you, Sue, as a hospice nurse and you, Nancy as someone who has been a
caregiver for a loved one, see attitudes in the medical community
changing in both the public and private response to death and dying?
I’m not very much in touch with the medical community, though I do go
to doctors, two of whom are friends. In my experience they like many
others wrestle with how to approach this topic effectively yet kindly
Some doctors don’t want their patients to feel they have abandoned them
with the reality of a disease progression. And the American Society
generally wants to make sure every possible treatment has been tried no
matter how much things have spread. It often can be a struggle for both
the doctor and the patient. The trend I am noticing, people seemed more
informed, perhaps because of the internet, which results in honest
conversations, and that is a good thing.
Jan: What do you see as
critical mistakes families often make initially in addressing a
terminally ill person? And how can they avoid these mistakes?
Not getting their paperwork in order in time. It’s crucial. And not that difficult.
Not having straight forwarded discussions about what the dying want,
what is happening and how to approach care. Some folks still want to
avoid ‘talking about it’. I was very fortunate enough to have a
colleague teach me early on to use the words, dying and death in my
conversations with families. “Don’t sugar coat it! she said” I always
encourage families to do the same and they do just fine.
Jan: It seems to me that often people use denial or repression and false hope in dealing with the pending loss of a loved one.
What do you see as the long-term effects of this approach?
You miss the opportunity to sit with the person and kind of recap that
life with them. When we could see that my mother-in-law was slowly
declining, I stop trying to have discussions with her about politics or
books and instead asked her questions about what her childhood had been
like, things that she had never talked about, at least with me, that
gave me something of an insight into who she was. She was more animated
when she talked about some of that stuff. Even if you try to do this and
don’t get that kind of response, at least you’ve made the effort, so
you don’t end up saying: Gosh, I WISH I had asked how he felt about
being the youngest kid in high school or what it was like to lose your
mom so early, or whatever.
Putting off does not stop what is coming. Unfortunately, I have witnessed
the regret felt when the dying person’s decline has brought them to a
unresponsive state. It can be painful for the families because any
opportunity is lost….except we assume they can hear us even if they
can’t respond which is somewhat helpful…..but “it’s not the same.”
Jan: How did writing this book help you both deal with trauma and provide catharsis?
I actually found parts of this book very difficult to write because
they were so specific, both the physical and mental decline that you are
often witnessing. The pain of losing someone you love and the struggle
to do it with grace and without recrimination for whatever slights or
mistakes you feel you suffered at their hands, or conversely whatever
parts of that relationship you depend on and will sorely miss is a
constant spiritual journey. But at the same time, the stories of those
who have managed this and the flashes of grace and glimmers of hope that
you get kept me writing. And rewriting!
It certainly is not something you get use to, each situation is
different and each loss is different. Again, the stories help put
emotions into perspective. Stories of courage and the generosity of
families to stand behind the dying person choices is inspiring. I find
myself wanting to share the stories in hopes that the reader may finds
some comfort. Meeting weekly to discuss a piece of writing made us
laugh, cry, feel frustrated, empathic, sorry but always energized to
move forward. I enjoyed this writing process and learned a lot.
Jan: What do you hope readers learn from reading this book?
I hope that foremost that it will act as the friend who is always there
to hold your hand even when you can’t get anyone on the phone, or maybe
don’t want to confide in someone else what you’re going through at that
moment. But I also know that the clinical details that Sue has laid out
here are a great help and encouragement – -for example, the chapter on
drugs, which was very thoroughly vetted by a geriatric specialist, are
really helpful in easing someone’s mind about what a huge help drugs,
when properly prescribed and administered, can be to quality of life in
I hope they learn to relax a bit and not walk around acting glum and
sad 24/7. I hope they learn to share some laughter and joy, the dying
want that too.
Jan: I was pleased to see a
resource section in this book that addressed dealing with young children
on death and dying issues, but I was also quite surprised to see a section devoted to recipes? Tell readers about these sections.
One of our editors suggested I add them and when I thought it over,
it made sense. This was specifically for the harried caregiver, who
often neglects him or herself in these situations. I used to write a
food column called Sunday Cooking, which is what I did when my children
were in school. I cooked several things on Sunday (and included them so
they both learned to cook), and we ate well all week. So few people
these days either cook, or even know how to cook easy, wholesome meals,
yet quality food/nutrition is key to our health, especially when you’re
stressed. I wanted to offer some easy, strategies for healthy meals.
This was Nancy’s inspiration. The readers have been pleasantly surprised to see the recipes and are grateful.
Jan: What advice about writing have you both found helpful and what advice have you chosen to ignore?
I’ve been writing professionally for a long time. The big thing I
learned early on is: Distill, which means hone your work as you would
the edge of a knife – carefully, mindfully and with an eye to its
ultimate use. I’ve written for newspapers and magazines for years, and
it teaches you to get to the point and to write for your audience. You
work really hard to convey whatever you’re writing about clearly,
gracefully, and as engagingly as possible in the space allotted. No
one’s got time or patience to wade through purely self-indulgent prose.
Nurses are taught to write in disjointed statements with the threat of a
lawyer looking over your shoulder. The first piece I sent Nancy I wrote
and re-wrote, woke up in the middle of several nights to change a
sentence or paragraph, it was bit daunting. But when Nancy said it was
‘not bad’ I slept great that night. Meeting weekly to discuss a piece of
writing made us laugh, cry, feel frustrated, empathetic, sorry yet
always energized to move forward. I enjoyed this writing process and
learned a lot. And I discovered what is meant by the book wrote itself.
When we were struggling with a piece a situation always presented itself
and guided us….I loved it.
Jan: In case I’ve missed something essential: What question(s) do you wish I had asked? Ask it here and add your response.
Who is this book for? Anyone who is going to be primary caregiver or in
some way associate with someone you care about who is walking that last
mile. It will help you understand better what you might see, how you
might help and how not to trip over your own emotions and flaws any more
I totally agree with Nancy
Jan: Thanks for the interview,
Sue Collins and Nancy Robson. Everyone will face the tough issues
addressed by this book. It is not a question of – IF - RATHER - it is a
question of WHEN. How can readers obtain a copy of this essential book,
contact you to speak, or find out more about you both?
Thanks so much for such terrific, thought-provoking questions and for this opportunity, Jan!
A BIG thanks to you Jan for this interview. I enjoyed the questions.
To obtain a copy of the book, contact us to speak or find out more about us, visit our website…oknowwhat.net
About Jan Bowman
Winner of the 2011 Roanoke Review Fiction Award, Jan's stories have been nominated
for Pushcart Prizes, Best American Short
Stories, and a Pen/O’Henry award. Glimmer Train named a story as
Honorable Mention in the November 2012 Short Story Awards for New Writers. Jan's stories have been finalists for the 2013
Broad River Review RASH Award for Fiction, 2013 finalists in the Phoebe Fiction
Contest, 2012 "So To Speak" Fiction Contest.
Jan’s fiction has appeared in
numerous publications including, Roanoke
Review, Big Muddy, The Broadkill Review, Third Wednesday, Minimus, Buffalo
Spree (97), Folio, The Potomac Review, Musings, Potato Eyes and others. She is working on
two collections of short stories while shopping for a publisher for a completed
story collection, Mermaids & Other
Stories. She has nonfiction publications in Atticus Review, Trajectory and Pen-in-Hand. She writes a weekly blog of “Reflections” on the writing life and posts
regular interviews with writers and publishers.
Learn more at: www.janbowmanwriter.com