‘Legacies from the Living Room: A Love-Grief Equation’

By Debra Parker Oliver

Three years after the death of her husband, David Parker Oliver, Debra was able to have enough perspective to write openly about her experience as his caregiver and to share her husband’s lasting legacies of love, hope, and travel. The title of the book reflects that much of the drama and day-to-day life following his diagnosis of cancer occurred in their living room, which became a sacred place for their family.

The book is a testament to the love that David shared with friends and family and the corresponding grief at his loss. As David said, “show me a person who has never grieved, and I will show you a person who has never loved … you can’t have one without the other.” Debra captures her reactions to the many challenges brought on by David’s diagnosis of Stage IV cancer and how his attitude, resilience and sense of hope were contagious.

I was initially introduced to Debra and David Oliver at a Hospice & Palliative Care Conference in New Orleans. They spoke movingly to an audience of several thousand healthcare providers about how he was living with cancer and how Debra was coping by his side as his caregiver.

David was a gerontologist and university professor and he decided that his illness offered one more opportunity to teach. He and Debra also created a blog that followed them from the diagnosis of his cancer, through treatment, and then to the eventual decision to choose hospice.

The title of their blog was: “Exit Strategy: Depriving Death of Its Strangeness,” and the consistent theme was that death can and should be approached as an expected and natural part of living. David survived for 42 months, undergoing chemotherapy and radiation, while focusing on living with rather than dying from cancer.

He continued to go on cruises, attend football games, and stay engaged with those around him. Passing along his “lessons learned” provided meaning and purpose through helping others. When he said to his family that he wanted to “die well”, they asked him to explain what that meant. After much consideration, he responded with the anachronym HOPE. At the end, he hoped to be Home, surrounded by Others, Pain-free, and still Excited about living, which Debra took on as her mission.

Throughout the book, the voice of Debra describes how she was jolted into the role of primary caregiver on the day of diagnosis by necessity, not choice. This was an honor, she says, but simultaneously the most difficult thing she had ever done.

All at once, she was terrified, grief-stricken, and felt helpless as she saw their fairy tale life ending. Their schedules were now dictated by tests, treatments, and medical appointments. As chemotherapy started, she witnessed her husband lose strength and his physical appearance change.

For the first time in their 20-year marriage, she no longer shared all her feelings to protect him and wondered privately how she would survive without him. When he was exhausted, she would reluctantly have to step up and make decisions for him and not with him. All these changes were accumulating, and she dreaded future losses that were coming her way.

Debra admits to occasionally being frustrated that the cancer was forcing her to feel more like David’s caretaker and less like his wife and partner. She also struggled to find her own sense of hope, and it came in bits and pieces. She hoped that they could get through a day without distressing symptoms. She hoped they could check off as many bucket list items as possible and fulfill his desire to “die well”, all while trying to share their story with others.

At times, she felt invisible and neglected as attention was understandably directed at David. He sensed this and described her role in his journal as someone offstage with her own problems while few noticed. At one point, when a hospice nurse turned to Debra and asked, “What can I do for you?”, she was overcome with emotion and immediately felt heard, less alone, and less anxious. There is an important message here for all of us.

As Debra and David’s blended family came together to support them, this heightened sense of unity revealed something positive evolving in response to David’s cancer. David’s son remarked that in a strange way the cancer was a wake-up call to appreciate the time remaining, to have honest conversations, and to truly connect.

David was able to have enough time to write legacy letters full of love and appreciation to each of his children, grandchildren, and close friends. The blogs he and Debra created offered a welcome distraction, but more importantly they helped to channel their thoughts, find meaning, and share their version of what hope can look and feel like, even with a terminal illness.

Storytelling can be brave and powerful, and Debra’s portrayal of both the love and the grief involved when caring for a loved one may offer support, solace, hope and healing to readers in similar circumstances. This book also serves as a reminder to all of us to acknowledge and champion the caregivers who are stepping up every day to fill this important role.

Six new programs at the library

The Friends of Rogers Free Library in Bristol are sponsoring a series of six new programs for caregivers and all others who may be coping with a serious illness or interested in issues around aging. It will begin on Tuesday, Sept. 12, at the library (525 Hope St.) at 3 p.m. in the Herreshoff Room. Programs can be attended in person or accessed online through the library website https://rogersfreelibrary.org/featured-programs/ . There is no registration necessary.   

Dates and scheduled topics include:

• Sept. 12 – “Caring for the Caregiver”

• Sept. 26 – Grief “Work”

• Oct. 10 – “Hospice - Myths & Facts”

• Oct. 24 – “Caring for Someone at the End of Life”

• Nov. 14 – “Understanding Dementia”

• Nov. 28 – Getting “Stuff” Organized

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life Doula. She can be reached at bonnie@bonnieevansdoula.com.