My grandfather died in May 2019. I typically write an essay after each major loss as part of my mourning. But I was not able to keep this practice when he died. Not until now. Writing has been difficult the past few years for so many reasons but in this case, I think I needed to let the loss breathe a bit before I could bring it to the page. I hope he'd be honored by the result.

I must have been preparing myself for months, throughout the updates on doctor appointments and hospitalizations. When I received word that Grandpa had been diagnosed with cancer, I thought, "of course.”

And maybe that knowing was something deeper or because so often that's how things end up in my family. Or because Grandma had been gone 12 years at that point and Grandpa kept saying things like, "this might be my last Family Reunion" and "this is probably my last Christmas." When I found out he'd opted for hospice, I wasn't surprised. He was 91. His other health problems meant he was unlikely to survive the aggressive chemo. He was ready to go.

This wasn't the first major loss I experienced while living out of state but it was the first time a loved one entered hospice and I wasn't there to help. Not since I worked for the same hospice that cared for my great-aunt and Grandma all those years earlier. Hundreds of things have changed in my life and in our family since then and yet I kept puzzling over how to be a good granddaughter from afar even though I knew there was nothing I could do. The roadmap changed and I did my best to adapt.

It all felt surreal, as if it was happening to someone else.

Grandpa started hospice shortly before my trip to San Francisco that spring and I received word of a shorter than expected prognosis. A prognosis is still only an educated guess; things could change quickly or stay their course. I’d seen both happen countless times throughout my former career. In any case, I couldn't reschedule my trip, not without throwing things off for other people, and so I decided to proceed as planned, knowing I might reroute directly to Chicagoland upon my return.

Grandpa held steady and I still wasn't sure what to do. Did I try to see him one last time? I called my cousin Adam to puzzle it out and then dealt with logistics.

I'm self-employed and throughout that spring and summer, it was near impossible to take any time off because of how busy work was. I may have traveled to San Francisco but I worked the whole time I was there—the beauty of working remotely. I flew back to Nashville, then drove to Louisville as planned for in-person work with a client, then jetted up to the Chicago suburbs that Saturday.

I didn't know what to expect. The last time I'd set foot in his nursing home, I'd been visiting one of my hospice patients. I knew this place and yet now I experienced it in a new way. When I found his room, I wasn't sure who would be there or if he'd wake at all for however long I stayed. My hands shook from nerves. The unknown has always held more sway over me than I'd like.

My aunt sat on a bed next to a reclined chair holding Grandpa, stretched out, asleep. Half his size. My aunt and I hugged and she gave me a quick update, then told me to wake Grandpa up. She warned me he probably wouldn't stay awake long.

Just from looking at him in the chair, I knew this was true.

But still. I put my hand on top of one of his and gently squeezed. His eyes popped right open and the moment his eyes alit on mine, a smile broke across his face. "Leigh!" He boomed, just like usual. Not quite as loud, perhaps, but with the same enthusiasm he'd been greeting me with for the past 39 years.

His hearing aids weren’t really working so I raised my voice to fill him in on life. He was tired and his eyes kept fluttering shut. He was frustrated by his inability to really visit but also resigned. He didn’t say it in so many words but he was ready to go.

My aunt and I talked quietly while Grandpa slept. He’d rouse himself every so often and ask for a sip of water or change the position of the chair.

He woke back up when it was time for me to leave. He clasped my hands, his skin papery but warm. “I couldn’t have asked for a better granddaughter,” he declared, his eyes intent on mine. I nodded, a lump in my throat, because this was it. I knew Grandpa loved me but he was not prone to such statements. This was what he wanted to leave me with and I clutched it close to my heart, grateful I’d decided to come.

A week later, he died.

There are so many stories I could tell you about Grandpa. How he piled all the grandkids into the bed of his pickup and drove us down the country roads. The popcorn he made every Friday night was always perfectly seasoned. The time he let me drive a tractor when I was 10 or 11—I steered, he manned the pedals. The way he boomed my name with a big smile on his face every time he saw me. Grandpa couldn’t really understand my life as a single woman—his sisters had been nuns and I definitely am not—but I never doubted he loved me.

After the funeral, after the cemetery, and well after the luncheon, most of the family headed over to the farm. Grandpa turned it over to my uncle when I was around 5 years old and my grandparents built a small house next door. Visiting the farm or my grandparents was synonymous and rarely did a visit go by spring through fall without walking over to find kittens in the barn or skip rocks at the creek (pronounced “crick.”)

After trading stories and remembrances, the grandkids (and a couple great-grandkids) walked down to that same creek. Grandpa was there in the land he tilled for so many years. He was there in our faces.

We are not the same without him but these things remain: the farm, the creek, our love.

Our last picture together, July 2018

Last week I went back on What Should I Read Next? to talk to my friend Anne about "sad books." But as I said in the episode, I prefer to say "stories that are about sad things." Because these books can still be hopeful and even uplifting!

I believe stories about grief and loss have so much to teach us, whether we're currently mourning or thinking ahead for the future.

I did not have time to discuss all of my favorite novels and memoirs that are about grief and loss. Not even close! But we did get to discuss quite a few.

I only mentioned a few of my favorite nonfiction books- we knew we didn't have a hope of covering that category in addition to everything else- so I wrote a post: Favorite Nonfiction Books About Death, Dying, And Grief.

We do discuss books that deal with cancer, miscarriage, death, and other trauma so if these topics are triggering for you, please exercise caution if you decide to listen and take good care of yourself.

Listen to episode 137: Bibliotherapy for the toughest times.

*****

If you're stopping by from Modern Mrs. Darcy, hello! I'm happy to have you here. You can learn more about me on my About page. You can also find me on Facebook, Twitter, and Instagram. 

My novel A Storied Life released June 12. You can order it and read more about it here. You can read about the inspiration behind the novel here.

Photo by John-Mark Smith on Unsplash

I know what you're thinking. Not the cheeriest of topics, especially for a Favorite Book list. And yet, this is a subject that is very near and dear to my heart for three reasons.

First, I've lost my fair share of loved ones and more loss is inevitably in my future. It is the bittersweet byproduct of being in relationship with others. Books have been a necessary part of my mourning process.

Second, I worked as a hospice social worker and child and teen bereavement counselor for several years. I've read tons of professional resources about death, dying, and grief and I love connecting people to the resources they need.

Third, we as a society do not talk about this enough and I want to encourage others to start the conversation with themselves and their loved ones. That's part of why I wrote my novel A Storied Life. That's why I'll be going on my friend Anne Bogel's podcast What Should I Read Next? in a couple of weeks to talk about my favorite novels and memoirs exploring this topic. (Update: listen to the episode here.)

And that's why I wanted to put together a nonfiction list so you can be equipped too.

Dr. Alan Wolfelt

Alan deserves his own category. He's a renowned grief expert who has written dozens upon dozens of books and they're my go-tos as both a professional and as a grieving person. He came up with the companioning philosophy for grief care and it's an incredibly gracious and compassionate approach. I had the opportunity to attend two of his trainings at the Center for Loss and Life Transition in Fort Collins and they were the highlights of my career. He's written a book about almost every kind of loss, including divorce, perinatal loss, and more. You can see all of the books available at the Center here. 

A few to highlight: 

Companioning The Bereaved: A Soulful Guide for Caregivers - Alan Wolfelt

Synopsis: This book by one of North America’s most respected grief educators presents a model for grief counseling based on his “companioning” principles. For many mental healthcare providers, grief in contemporary society has been medicalized—perceived as if it were an illness that with proper assessment, diagnosis and treatment could be cured. Dr. Wolfelt explains that our modern understanding of grief all too often conveys that at bereavement’s “end” the mourner has completed a series of tasks, extinguished pain, and established new relationships. Our psychological models emphasize “recovery” or “resolution” in grief, suggesting a return to “normalcy.”

Understanding Your Grief: Ten Essential Touchstones for Finding Hope and Healing Your Heart - Alan Wolfelt

Synopsis: One of North America’s leading grief educators, Dr. Alan Wolfelt has written many books about healing in grief. This book is his most comprehensive, covering the essential lessons that mourners have taught him in his three decades of working with the bereaved. In compassionate, down-to-earth language, Understanding Your Grief describes ten touchstones—or trail markers—that are essential physical, emotional, cognitive, social, and spiritual signs for mourners to look for on their journey through grief.

Healing Your Grieving Heart series - Alan Wolfelt

Synopsis: With sensitivity and insight, this series offers suggestions for healing activities that can help survivors learn to express their grief and mourn naturally. Acknowledging that death is a painful, ongoing part of life, it explains how people need to slow down, turn inward, embrace their feelings of loss, and seek and accept support when a loved one dies. Each book, geared for mourning adults, teens, or children, provides ideas and action-oriented tips that teach the basic principles of grief and healing. These ideas and activities are aimed at reducing the confusion, anxiety, and huge personal void so that living their lives can begin again.

Healing Your Grieving Heart is a great place to start but the book has been adapted for other mourners, including children, teens, spouses, parents, and adult children. You can see the whole series here.

Companioning The Dying: A Soulful Guide for Caregivers - Greg Yoder, foreword by Alan Wolfelt

Synopsis: Based on the assumption that all dying experiences belong not to the caregivers but to those who are dying—and that there is no such thing as a “good death” or a “bad death,” Companioning the Dying helps readers bring a respectful, nonjudgmental presence to the dying while liberating them from self-imposed or popular expectations to say or do the right thing. Written with candor and wit by hospice counselor Greg Yoder (who has companioned several hundred dying people and their families), Companioning the Dying exudes a compassion and a clarity that can only come from intimate work with the dying. The book teaches through reallife stories that will resonate with both experienced clinical professionals as well as laypeople in the throes of caring for a dying loved one.

With The End In Mind: Dying, Death, & Wisdom in an Age of Denial - Kathryn Mannix

Kathryn Mannix is a palliative care and hospice doctor in the UK. Her goal with this book is both to promote conversation about dying and to show that those who are dying are still living. This often surprised people when I still worked for hospice, that there was so much light and laughter in my days. Yes, there were sad, hard, and frustrating days- how could there not be?- but more often than not, my days were filled with life.

Mannix shares stories to illustrate what happens when people are dying and at various stages, as well as people’s reactions to their or their loved one’s decline. She shares stories from early on in her career when she was a student on up to the present. She doesn’t always get it right and I appreciate how she owned up to her mistakes and learned from them. This helps us learn too. She also shares how her colleagues helped her improve her practice. 

This could simply be a collection of stories but Mannix also includes questions at the end of each section. These are questions to think through and then to discuss with family. You’re able to follow the process modeled by Mannix and her team. 

Overall, this is a solid resource on end of life issues, whether you’re a family member facing the loss of a loved one or someone who has worked in hospice for years. The stories are often heartwarming and beautiful and even the hard ones illustrate some aspect of death and life we need to better understand.  (Read my full review here.)

Smoke Gets In Your Eyes: And Other Lessons from the Crematory - Caitlin Doughty

I applaud Doughty's exploration of death and the funeral industry. Too few people recognize the value in these topics. When we ignore the reality of death, it hampers our ability to truly live and this plays out in myriad ways, from our healthcare system to Botox. Doughty has some unconventional thoughts about the post-mortem but I appreciated how she came to her conclusions and especially how she makes room for a difference of opinion over what should happen after we die. More than that, she makes room for honest conversation. Though I worked in hospice for several years and have attended funerals my whole life, I still learned a lot in these pages. If you're not familiar with the "death industry," you might not be prepared for the wacky sense of humor or what death looks like. And really, that makes the case for this book that much more.

My Glory Was I Had Such Friends - Amy Silverstein

This is an honest and unflinching portrayal of friendship and end of life issues. It's a memoir but I still believe it's a resource for caregivers and the chronically ill. Amy Silverstein had a heart transplant at age 25 in 1988. At the time, her doctors predicted she might live another 10 years at best. Instead 26 years passed, during which time Amy married her husband Scott, finished her law degree, adopted a son, and amassed a wonderful collection of friends.

People think once you get a heart transplant, life goes back to normal but Amy shows this is not the case. While she's lived a full life, she's also had to be vigilant about her health, dealing with numerous hospitalizations and close calls along the way. When the book begins, she's learned her transplanted heart is failing and she'll need to undergo another transplant. This is not an easy decision for her and she does not hold back on taking readers through her mindset about whether to take on the odds. 

In the end, she decides to go for it and her friends immediately rally around her. Since Amy and Scott will have to relocate to LA for several months, nine of her friends decide they will take turns flying out and keeping Amy company while she waits for a heart. We get to learn through the process of how sick she gets and as she confronts her mortality. I'm so glad not only that she received a new heart in time but that she was able to write this account for us. (Read my full review here.)

Being Mortal: Medicine and What Matters in the End - Atul Gawande 

Surgeon Atul Gawande examines the role of medicine in extending life and how it is used when life is ending that can, in fact, lead to greater suffering. Profoundly insightful, well written, and engaging. These are good things to think through NOW. If you haven't talked to your loved one about their end of life wishes or yours, this is the time to think through it and start the conversation. Gawande didn't start out in the place of understanding he came to and he had the same questions and resistance many of us do when it comes to the hard talks and that's part of why this book works so well.

When Breath Becomes Air - Paul Kalanithi 

A wonderful addition to the end-of-life canon. Paul Kalanithi was was at the end of his training as a neurosurgeon when he was diagnosed with stage IV lung cancer. He began writing about his treatment and grapples with the question of what gives life meaning. He died before he finished writing this but his insights are an immeasurable gift. I wish he would have delved into his palliative care team but that is one of the limitations of writing a book while dying. There is much more he could have explored and yet the material he did give us is rich, impressive, and necessary. 

Intern: A Doctor's Initiation - Sandeep Jauhar 

Cardiologist Sandeep Jauhar gives us a revealing inside look at medical residency and the world inside hospitals. Because of my background, I was not surprised by much of what Jauhar encountered, although some improvements have been made since he completed residency. There's still much to be done! The book might have been stronger had Jauhar not waffled so much about his chosen career and calling but still, I'm glad he decided to lower the veil for those of us who do not work as doctors or nurses. While this doesn't focus specifically on death, dying, or grief, you can't write a book about a medical internship without delving into those topics. Jauhar doesn't always get it right but there's a lot we can learn from his stories and I think this gives great insight into what we expect, whether warranted or not, from our doctors.

On Death And Dying - Elisabeth Kübler-Ross

Of course Kübler-Ross needs to be included on a list like this! While her work has been misapplied and misunderstood, her research was ground-breaking. Those five stages of grief everyone talks about? That's actually the five stages for the person who is dying: denial and isolation, anger, bargaining, depression, and acceptance. In this book, she explores how a terminal prognosis affects the patient and how professionals can better serve the person and their loved ones. It's a valuable resource.

Disclosure: Affiliate links included in this post. 

With The End In Mind: Dying, Death, and Wisdom in the Age of Denial - Kathryn Mannix

My Review - 4 Stars

Why do we struggle to talk about death and dying?

This is a question I’ve often asked myself in the past 15 or so years. Because my maternal grandparents were both one of thirteen children, I grew up in a large extended family and, as such, I grew up going to funerals. I learned how to mourn from my relatives and how to have hard conversations. It was a sad part of life. But it was part of life.

When I started my first fieldwork placement at hospice as a social work intern, it quickly became clear I had an unusual upbringing compared to many of my patients and their families. Many were not as well-versed in talking through these issues. From the fieldwork placement, I went on to be a hospice social worker and child and teen bereavement specialist.

My mantra became “hope for today, plan for the future.” Yes, we can hope that this decline will reverse but we can make things easier on ourselves and our loved ones by discussing advanced directives and funeral plans now.

Kathryn Mannix and I have a lot in common in this regard. Mannix is a palliative care and hospice doctor in the UK. I was particularly fascinated that she founded the UK’s first palliative care cognitive behavior therapy (CBT) clinic. I love the idea of using CBT in this context!

Mannix’s goal with this book is both to promote conversation about dying and to show that those who are dying are still living. This often surprised people when I still worked for hospice, that there was so much light and laughter in my days. Yes, there were sad, hard, and frustrating days- how could there not be?- but more often than not, my days were filled with life.

Mannix shares stories to illustrate what happens when people are dying and at various stages, as well as people’s reactions to their or their loved one’s decline. She shares stories from early on in her career when she was a student on up to the present. She doesn’t always get it right and I appreciate how she owned up to her mistakes and learned from them. This helps us learn too. She also shares how her colleagues helped her improve her practice.

This could simply be a collection of stories but Mannix also includes questions at the end of each section. These are questions to think through and then to discuss with family. You’re able to follow the process modeled by Mannix and her team.

French Resistance included one of the best, most compassionate descriptions of the dying process I’ve ever encountered. Mannix observes her trainer walking a patient through it at the new hospice. “Few have seen a death. Most imagine dying to be agonizing and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see something terrible.” p. 30

Talking About The Unmentionable is about how to talk to children about death and dying, whether it’s due to pets or relatives. It helps normalize the idea of death and shows the importance of our need to grieve our loved ones, plus details about what children understand at various ages.

Last Waltz was about death of Mannix’s 99 yo grandmother. I especially appreciated her insights on how waiting is not a passive experience when it comes to our loved ones who are declining. She notes how this loss made her a “better servant” to patients’ families and more patient with repeated requests for her to make sure their loves weren’t in discomfort or distress.

There are two chapters that puzzled me. Wrecking Ball may need a trigger warning. The description of the death might shock or be disturbing to some and the caution does not come until the end of the chapter. While it’s a good example of an unanticipated death, proceed with caution.

Please Release Me - B side, is an odd chapter loosely about euthanasia. The patient was originally from the Netherlands where it’s legal but he came to England instead where he went on hospice. Euthanasia is a complex issue and I felt she did it a disservice with her commentary. We don’t know whether hospice exists there, what the cultural understanding of death is, or whether the patient's account was biased. Don’t take this to mean I’m advocating for euthanasia. But it requires more nuance than we were given in this chapter.

Overall, this is a solid resource on end of life issues, whether you’re a family member facing the loss of a loved one or someone who has worked in hospice for years. The stories are often heartwarming and beautiful and even the hard ones illustrate some aspect of death and life we need to better understand.

Synopsis

Through stories from her own practice, a palliative care doctor takes the reader on a journey through dying.

Modern medical technology is allowing us to live longer and fuller lives than ever before. And for the most part, that is good news. But with changes in the way we understand medicine come changes in the way we understand death. Once a familiar and gentle process, death has come to be something from which we shy away, preferring to fight it desperately than to accept its inevitability. Palliative care has a long tradition in Britain, where Dr. Kathryn Mannix has practiced it for 30 years. In this book, she shares beautifully crafted stories from a lifetime of caring for the dying. With insightful meditations on life, death, and the space between them, With the End in Mind describes the possibility of meeting death gently, with forethought and preparation, and shows the unexpected beauty, dignity, and profound humanity of life coming to an end.

Buy The Book Here:

Amazon |Barnes & Noble

Disclosure: I received an ARC from NetGalley in exchange for an honest review. Affiliate links included in this post.

It's the blink of an eye and the stretch of time all in one. Ten years since Grandma died. The memories of her final weeks are crystal clear, could have happened just the other day, in fact.

Mom calling to tell me what Grandma's diagnosis was as I sat sobbing in my car in the office parking lot. The night I spent in Grandma's hospital room and all the stories she told before drifting to sleep. Swinging by the nursing home when I had a moment between patients. Liaising with hospice- the very one I worked for- when Grandma decided to stop treatment a month in. How she anointed everyone who visited with holy water, even when we had to guide her hand the last day or two. Everyone who stopped by the house and the visitor guidelines we had to enact so she could actually get some rest. The way I knew when it all changed, when we went from weeks left to days. Sitting next to her with a book in one hand and her hand in the other, unwilling to go to bed even though I wasn't the night nurse that final night. 

How empty a room sounds when another rasping breath doesn't come.

How we broke apart the night she died. How we had to put ourselves back together in the intervening years.

I'm all too aware of how much has changed since then.

I wrote Grandma a letter in college when she had a minor health issue and hadn't been good about taking her medication, telling her she needed to take care of herself so she could see me walk down the aisle. A few years later it wouldn't matter if she took her medication or not; cancer was a far greater foe to our dreams.

Grandma told me once she prayed to St. Francis, the patron saint of lost causes, for me to find a husband. Here I am, 10 years later, apparently a lost cause. Of course, I don't believe that but it makes me chuckle. It makes me think.

Our family has undergone so many changes since Grandma died. There have been weddings, divorces, diagnoses, births, and even more loss. We've adapted traditions and let go of others. People take turns hosting family gatherings and last year Grandpa even moved out of their house and into a retirement community.

We are not the same.

Loss changes us, this I know, but I could not have foretold the way this loss would irrevocably alter the course of my life.

If Grandma had not died, I might not have moved away from my Illinois hometown. I'd likely still work for hospice. 

Grieving while being a hospice social worker was impossibly hard. Much of that summer is hazed by my mourning. When I came out on the other side, I no longer felt the same about the work I did. I was still good at it, still passionate about end of life issues, but I no longer felt the same enjoyment. Before Grandma died, I could have been a hospice lifer. After, not so much. 

Maybe I'd have ultimately left that job. Maybe wanderlust would have visited and I still would have moved out of state. There's no way of knowing for sure but I can't imagine Grandma being alive all these years and not wanting to be close to her orbit.

We were close. She taught me my first sewing and cooking lessons. She exemplified compassion and grace. She was always, always, always taking care of other people. It is little wonder I ended up in social work.

When I was little, I wanted nothing more than to grow up to be like Grandma and my mom. My life took such a different direction, particularly the last several years, but their examples are still guiding lights. Maybe I'm not a wife or mother like them- maybe I never will be- but I look out for the underdog and cook and bake for friends and try to be there for family, even when I'm miles away.

I still wear the turquoise ring that I found in her jewelry box, the one she probably never wore. It was hers and yet it's my style and there seems to be some symbolism there.

It's been 10 years and my life testifies to the passing of all this time.

I miss her.