Living with Grief When Illness is Prolonged, edited by Kenneth Doka, Ph.D. & Joyce Davidson.    Hospice Foundation of America, 1997                            

This book is a collection of  papers about how a prolonged illness is slowly killing a person, and how that is different from a sudden death or one with a short illness. Prolonged illness means that the care giver is on call for a much longer time; this takes a huge toll on the caregiver both mentally and physically. On the one hand, a longer illness gives time for talking, finding out about the dying person’s life and opinions, and for understanding and forgiving. But the longer time needing care can bring on feelings of guilt in the dying person, fearing they are asking too much of their family.

It’s an interesting book, but because it’s written by several people, certain passages are much more user friendly than others. It goes over such things as anticipatory grief, ethical considerations, hospice care, and sections on AIDS, cancers, and Alzheimer’s disease. The final part consists of how long term disease effects children and teens, things the caregiver should do, and the use of rituals both before and after death. I’d give it five stars for useful information, but only 3 ½ stars for being reader friendly- many passages seem to be written for the professional hospice worker, mental health professional, or MD. So that leaves it with a 4 star rating.

 

Let’s Talk About Death Over Dinner: An Invitation and Guide to Life’s Most Important Conversation, by Michael Hebb.

Author Hebb is asking a simple thing of us: to talk about death. Specifically, our own deaths. For the vast majority of us, that’s not actually a simple thing. It’s natural for humans to shy away from talking about- even thinking about- our own deaths. And yet it’s the one sure thing about our lives. And yet we ignore it, like the proverbial elephant in the room, until it is suddenly too late to make our plans, to tell people what we want for final arrangements, to decide whether to go with hospice or to fight until the end, to tell people we love them or we’re sorry.

Hebb goes around hosting dinner parties where death is the subject. He uses such prompts as “What would you want people to say about you at your funeral?”, “What do you want your legacy to be?” and “Do you have a will and advance directive in place?”

If you don’t think about these things, and deal with them while you are well, you may very well lose control over them. Do you want to be kept alive at all costs, even if it means being hooked up to machines, unable to communicate or move? How do you want your assets to be divided? If you don’t deal with that, the courts will.

This book will help guide you through talking about these things. You will have to really think about how you think about death, and what you want. I am a hospice volunteer, and I highly recommend it. 

I received this book free from the Amazon Vine program in return for an unbiased review. This did not influence my views. 

Iris and Her Friends: A Memoir of Memory and Desire, by John Bayley. W.W. Norton & Co; 2000

“Iris and Her Friends” is the second book John Bayley wrote about his wife, novelist and Oxford don Iris Murdoch, and her decline from Alzheimer’s disease. The term ‘her friends’ does not refer to people in her life, but to the compensations that her disease brings with it- the fact that she nearly instantly forgets bad things that happen, the warmth of simply holding someone you love, and that she no longer has to obey rules of decorum. Bayley, who had a lot of time to examine all facets of their life while caring for Iris (he took care of her at home up until a couple of weeks before her death), seems to have been determined to see all sides of the situation.

Most of the book is about Bayley’s life before meeting Iris. He reminisces about his childhood and young adulthood while lying in bed, unable to sleep because Iris is not settled into sleep herself. He was a bookish, introverted lad who stood apart from his older brothers (and his parents) in having no love for golf- they lived on a golf course. He spent most of his childhood playing by himself. While boarding school was hell for him, he took to the military quite well- he knew what was expected of him there. These memories are interspersed with the daily life of caring for Iris- walks, meals (spoon feedings), and the odd habits she developed as her disease progressed. Through it all, despite occasional episodes of rage on his part due to sheer frustration, is the love that held them together for so many decades.

While not as incredible a book as ‘Elegy for Iris’, it’s a thoughtful and moving treatise on love and loss- when the person you lose is still right in front of you.

The above is an affiliate link. If you click through and buy something- anything- Amazon will give me a few cents. This in no way influenced my review. 

Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life, by Maggie Callanan. Bantam Books, 2008

Maggie Callanan, along with Patricia Kelley, wrote “Final Gifts”, a groundbreaking book about how people die. “Final Journeys” is a companion book and focuses on the care giver’s role and how they can best help the dying and take care of themselves at the same time. She explains how entering hospice care is not ‘giving up’, what paperwork the dying (which is all of us, really) should have completed to make things easier for themselves and their loved ones, that it’s okay for the dying and the family to laugh and joke, and why you shouldn’t call 911 if the person does not want aggressive resuscitation. 

Callanan is a veteran hospice nurse with 27 years of experience working with the dying at the time she wrote this book. She’s helped innumerable families as a member passes on, and has seen all sorts of scenarios. In this book, she answers a lot of the questions that people have about giving care to a family member facing death. She doesn’t just dwell on the dying person, but on what the care giver experiences; how different people react to the impending death of a loved one; how they grieve; and various options for end of life care. The book is written in an easy to read style, even when dealing with medical details. I’m not a stranger to caregiving and dealing with death and I learned a lot from this book, especially about family dynamics. 

The above is an affiliate link. If you click through and buy something, Amazon will give me a few cents. This did not affect my review.