See part 1, "Dementia: What Dickens Knew" here
See part 2, "Dementia: Visiting the Cleveland Clinic and Beyond" here
When I face the new stages of life, which are often the old stages, I read. Like childbirth and cancer, the old age stage is filled with horrid unfounded tales told by our contemporaries. Books can be filled with untruths too, but can be fact-checked and considered at length and close at hand. I tend to appreciate authors who provide both personal experience and research, especially statistics and references. Here are a dozen titles whose books I have benefited from, some going back to my sister’s fight with cancer 2000-2002 and my mother’s all too brief illness and death with pulmonary fibrosis in 2008 up to my father’s current dementia.
My Top Two
My top two are Katy Butler’s Knocking on Heaven’s Door (2013) and Atul Gawande’s On Being Mortal (2015). I found Butler’s book through her essay “What Broke My Father’s Heart” (in Best American Essays 2010) about her family’s struggles with her father’s dementia. The essay first appeared in the NewYork Times .
What I like best about this book is Butler’s stunning use of facts about the medical establishment and especially how much of our care is driven--misdriven, careening into walls, smashed-- by our health care system. (This was all before Obamacare, so I am not going to be blaming it, which has at least provided some health care for thousands and thousands who never had it.) For example, her father’s specialist was paid thousands of dollars (counting a gold-plated watch) for every pace-maker he put in, but her father’s lifetime GP could not be paid for an appointment to explain why the pace-maker was not a good option for him. This book is heart-wrenching, factual and so well-written.
More recent and my current favorite is On Being Mortal (2015). Now, I have been smitten with every article and book on health that Dr. Gawande has written, and I am chauvinistically pleased that he is an Ohio boy, born and raised in Athens. More to the point, though, he is now a surgeon in Boston and a medical professor at Harvard. Everything he writes is filled with his common sense, clear prose, and many case studies and facts. In this book, among studies of his patients and other doctors’ patients, he also gives stories at length about his own parents and other family members. The book is divided into sections on topics such as independent living, assisted living, and hospice. While recognizing some of the worst practices, the book reflects most on best practices and some fascinating history, including the story of the woman who founded the concept of assisted living. Gawande's account of his own father’s decline led me to see that he has definitely walked in my shoes, a few paces ahead of me, and I am glad for his wisdom and practices that I can try to follow. Katherine Boos’ blurb on the book sums it up perfectly: “A deeply affecting, urgently important book—not just about dying and the limits of medicine but about living to the last with autonomy, dignity, and joy.”
Then, ten more books, in alphabetical order by author:
Ira Bycock. The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (2009). Bycock is a doctor specializing in palliative care, whose writing and work is in trying to get us to think and talk about the end of life. He has convinced me that more palliative care might make for less euthanasia. He has seen that palliative care can cure needless suffering and in some cases, actually helps people live longer and if not longer, to have better deaths. Certainly palliative care would have ended the terrible pain that my mother had the last week of her life when she was refused palliative care by both her GP and her specialist, who claimed she had 5-7 years to live and who never witnessed her suffering.
Roz Chast. Can’t We Talk About Something More Pleasant (2014). I am not a big fan of cartoon memoirs, nor graphic novels, nor their ilk in many categories, but I am a fan of Chast’s New Yorker work. I could not relate to Chast’s distance and seeming disapproval of her parents’ lives, of what seemed her driving force, guilt. But I very much related to the dynamic she depicts where we all fluff off the discussions that Bycock is trying to get us to have. I am hearing my generation repeat the same useless lines of my parents: “When I get to the point where I can’t do anything but___ [fill in the blank with: watch televisions, go to a nursing home, live on IV’s….], just shoot me.” Chast's whole book, starting with the title, reflects this attitude of her parents. Read it and weep and then start talking, to your kids if not your parents.
Charles Dickens. Little Dorrit (1855, among his many novels with elderly characters, pleasant and not). Supposedly George Bernard Shaw once said that this book is “more seditious than Das Kapital,” and while Shaw probably meant the novel’s portrayal of poorhouses, the character of Mr. Dorrit in relationship to Mr. Nandy provides a clear and seditious treatment of what Pipher (see below) calls “the old old” by “the young old.” In addition, the portrayal of Mrs. Plornish, Nandy’s daughter, shows an adult child who reveres her father and tries to do best by him in her father's difficult economic circumstances along with her own.
Doty, Mark. Heaven’s Coast (1997) and Dog Years (2007). Doty had many years of caregiving for his partner who died of AIDS, for other friends, and for his aging dogs. What was most useful to me was his criticism of some the bossier hospice providers, while still appreciating hospice. His words comforted me in the aftermath of my sister’s and mother’s negative experiences with hospice. Doty, for example, notes of the hospice provider who started to hint that his lover should talk about “letting go,” “Doesn’t it make sense that we might wish to have these conversations, if we wish to have them, with people we love?”
Steven Henry Goldring, Unbelievable (2010). This self-published book doesn’t deal with aging, but it does show in clear, hair-raising detail how family members can turn on relatives and have them committed to institutions unnecessarily. Many of the elderly are threatened with commitment by sons and daughters, as well as by government agencies, as I have written about on this blog. I once heard a former teacher of mine, living across the hall from my father, being screamed at by his daughter, “If you even think of removing me as your POA, I will have you declared mentally incompetent.” Steven Goldring managed to extricate himself and is living much more healthfully ever after, with humor and grace.
Jacoby, Susan. Never Say Die: The Myth and Marketing of the New Old Age (2007). Like Katy Butler, Susan Jacoby is here to tell us that living longer is not the best of all possible worlds, though much of our national conversation and medical practice would make us believe so. An author of nine other well-researched books, many on history, she provides American history to show that we are a youth-oriented culture and current examples to show we are burying our heads in the false sands of how young we can stay forever if we just live right. She is trying to get us to lift our heads and look death in the eye.
Dr. Kenneth A. Kosik, The Alzheimer’s Solution: How Today’s Care Is Failing Millions and How We Can Do Better (2009). I stumbled upon this book in the library when I was first facing my dad’s situation after the death of my mother, who had been making up for his memory loss as he was making up for her physical weakness. And while this book had so much more, my reading focused on his analysis of how much money the drug companies are making on Alzheimer’s medicine that shows no clear clinical proof of working, only anecdotal evidence. It’s been a big influence on me. Researchers continue to search for a drug that will work, which I’d love to see. This week, NPR had a story on two new ones they will begin testing on humans in 2016, and I’d love to see them work, for me maybe, if not in time for my dad.
Dennis McCullough. My Mother, Your Mother: Embracing “Slow Medicine,” A Compassionate Approach to Caring for Your Aging Ones (2007). A geriatrician for many decades, McCullough, like Butler and Bycock, believes that much of our super-duper expensive, end-of-life care is chosen out of an uninformed, crisis-like atmosphere. Like Bycock, he is in favor of palliative care, and both of them, unlike the doctor and family that Iwitnessed in my father’s presence, are motivated more by the patient’s comfort than the family’s or institution’s desire to get it all over with. Also, his emphasis is on the adult children helping the parents to navigate the confusing waters of elder care, and not to wait, as Chast's family did, until so late in the process but to start having the conversations early. I also love his admonition for adult children to remain in attendance during their parents' hospitalizations. Dr. McCullough notes, “Most geriatric doctors I know would not want their own parent in a hospital without a family member in attendance at all times.” He is good at recommending movies and quoting poems that are apt for these situations.
Mary Pipher, Another Country: Navigating the Emotional Terrain of Our Elders (1999). This book is a little older than the others, and it comes from a clinical psychologist who sometimes, honestly, seems a little flakey to me. However, I really like and respect how she tries to get the younger generation to see that much of their difference from the older generation is based in different world views that are legitimate on both sides. (Many of the younger generation just like to think they are so much smarter than their parents.) For example, she says, our parents’ generation is “pre-irony,” clearly a different way of looking at situations. Like me, she has always genuinely liked older people.“In America, we are xenophobic toward our old people,” she notes. She also makes an interesting distinction between the young old and the old old-- the former being, well me, someone 60 or older who still has good health and the latter, those who are old but with health issues. Like McCullough, she salts her writing with quotes from literature, which is a relief because her own writing style is a little wearing.
Laura Wayman, A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimer's Disease or Other Dementia or Memory Loss (2011). Honestly, this one seems a little flakey at times, too, and a bit over-focused on one way to deal with dementia. However, having seen many unloving approaches to dementia care, I have to rate this one loving and worth reading, especially for two things. First, Wayman focuses on the caregivers, and how they need to take care of themselves. Second, she has very practical suggestions for those who are having difficulty responding to parents and patients who are mentally in another world, maybe not able to recognize the world they physically live in, maybe not even their own adult children.
That's my list for now. Please feel free to post in "Comments" any titles I am missing. I'd love to see suggestions for poems, novels, and movies that treat the topic of aging and caregiving, too.