A journey with one Australian caregiver's experiences in palliative care brings us face to face with our own mortality. If we are willing, there is much to learn from those who have walked their final steps on this earth and been transparent about their regrets. Bronnie Ware's memoir recounts her years of caregiving to the dying and the wisdom she received and painful personal growth that emerged from those experiences. It also stands as a warning to those in palliative care to guard against burnout.
The top five regrets of the dying are not surprising, but they are woven through the lives of the people Bronnie cared for in such a powerful way as to pull us into the emotion of the lament. The regrets are universal, and if we took the time to think for a moment, we would probably come up with similar statements. The challenge is to remember those axioms and care enough to change our behavior before we are at death's door. Given the changes brought about in Bronnie's life from exposure to the dying, learning from our experiences seems to be the theme of the book.
A secondary theme is the warning against burnout in caregiving. After several years in the profession, Bronnie suffered a catastrophic depression. She admits she overinvested emotionally in her dying patients to the neglect of herself and suffered the fallout of abandonment of her own needs. Bronnie's account of her own emotional despair is likely a hazard inherent to caregivers, whether they support the ill or dying.
Despite the subject matter, this book is uplifting and encouraging with accounts of deep friendships with her patients and times of laughter and delight. In addition, the book is sprinkled with pithy wisdom: “Success doesn't depend on someone saying yes, we will publish your book or no, we won't. It is about having the courage to be you regardless” (p. 63); “We are given lessons to heal, though, not necessarily to enjoy” (p. 64); “Expressing our feelings is a necessity for a happy life” (p. 125); “If ever one wants to live in denial about the state of our society, avoid nursing homes. If ever you feel strong enough to look at life honestly, spend some time in one” (p. 135); “Loneliness isn't a lack of people. It is a lack of understanding and acceptance” (p. 139); and likely her theme statement and the one that buoyed her up while empathizing with the suffering of her patients, “One of the most beautiful things I was learning through palliative care was to never underestimate anyone's capacity for learning” (p. 154).
This book is an experience in living, not dying. We should probably read a book like this every 10 years to keep our focus on important relationships and objectives—the ones that will keep us from experiencing regrets when the final bell tolls. Of course, anyone serving in palliative care will likely feel camaraderie with Bronnie's experiences and hopefully heed her warning about burnout.
My interest in this book was not only curiosity in what others who were dying found to be regrettable so that I might not find myself in the same straits but also to find out what lessons Bronnie learned as a caregiver. I have been on both sides of the caregiving/care receiving coin. In 1988 my husband was diagnosed with Guillain-Barré syndrome. He was severely impaired for weeks and took months to recover strength and coordination. Our children were ages 11, 9, and 2, and I had lost a baby due to premature birth 7 months earlier. I understand how one can give to the point of self-neglect. I also understand how easy it is to empathize with the patient to a degree of emotional exhaustion. I suspect these two tendencies are pitfalls all extended caregivers risk. I understand now how to support those who are supporting the patient. Experience is an enduring teacher.
In 2008 I was diagnosed with breast cancer. I spent the next year in treatment—chemotherapy, surgery, radiation. I saw the sacrifices my family made through the eyes of the wounded one. I didn't discover until months later that my daughter was living with the fear that I would be taken from her. She hardly left my side. Although I had an optimistic prognosis, this did not quell an unfounded fear in her mind that my demise was imminent. Thus, I learned how important it is to take the emotional temperature of caregivers and find out how they are doing. They are the shadow soldiers in the battle, where all the attention and support goes to the patient.
Whether experiencing life as the patient or the caregiver, I agree with Bronnie's declaration, “What may appear as tragic situations to others were also great opportunities for growth and learning for the person involved” (p. 145). Like most people, I haven't been left out of the proving ground of trials. Like Bronnie, I have chosen to grow and learn and have fought and found victory over sadness and bitterness. As Bronnie concludes and I agree, “So the best way to make the most out of life is to appreciate the gift of it, and choose not to be a victim” (p. 81).
If you have stayed with this review thus far, you are likely hoping for disclosure of the top five regrets of the dying. Hopefully, you have begun to ponder your own list and will find these affirming. 1) “I wish I'd had the courage to live a life true to myself, not the life others expected of me.” 2) “I wish I hadn't worked so hard.” 3) “I wish I'd had the courage to express my feelings.” 4) “I wish I had stayed in touch with my friends.” 5) “I wish I had let myself be happier” (p. v).
This short work is in the self-help category. It certainly packs a lot of thought-provoking direction into an easy to read and entertaining format. If you read it, be prepared to have your thinking tinkered with.
Bronnie also has a website, www.bronnieware.com, which is a nice companion to her book. The website features a blog, gift shop, and information about her other professional activities.