Advance Care Planning

When I first came on to Hospice work, my supervisor encouraged me to maintain ongoing self-study about various topics relevant to the work.  One day, I pulled a book from the shelf in our office.  An observant co-worker noticed and commented that I had grabbed “the Bible for caring for dementia.” The book is THE 36-HOUR DAY:  A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss.  The title itself, as does the book, pulls no punches.  Providing ongoing care for a person with dementia is time-consuming, emotionally demanding, stressful, and exhausting, so that one’s days feel like they are longer than they are and packed with too much to do and remember.

The task can also be loving and rewarding, especially when the caregivers learn to take care of themselves as well.  The book is also what it says it is- a guide to caregiving.  The authors are Nancy L. Mace and Peter V. Rabins, both affiliated with the Department of Psychiatry and Behavioral Sciences at the John’s Hopkins University School of Medicine.  Don’t think, though, that it is written with sophisticated terminology or an excess of medical jargon, making it heavy and dense.  To its credit, the style is easily understandable and presented in a conversational, caring, and concerned tone directly to the reader who may already feel overwhelmed when first facing the challenge of caring for a spouse, a parent or grandparent, a sibling, or another acquaintance living with dementia.  Above all, it is a practical volume, with all sorts of advice when confronting the many challenges of this type of care.  Since its appearance in 1981, the book has been revised and edited six times to keep up with new information as it emerges.  Over three million copies have been sold worldwide as of the publication of the 2017 edition.

The reader/caregiver is immediately immersed into the experience as the first chapter opens with the case history of a woman who begins to notice her memory is slipping and moves along as her limitations compound.  The focus is first on her.  What is she experiencing?  What is she feeling?   What can she do?  Woven through this are brief accounts of her family members’ attempts to care for her and their experiences and feelings as their involvement becomes more complex.  It recounts a loss of skills around self-care and social interaction, moving us all the way through her journey which ultimately end with her admission to a long-term care facility when her family arrives at the point of no longer being able to care for her.

In this introductory section, there is a brief presentation raising the question “What Is Dementia?”  The book is careful to explore all sides of the challenges of caring for someone with dementia.  The authors really walk alongside the readers/caregivers in taking the first steps toward assuming the responsibility of caregiving. Having read the book, I am hard-pressed to discover any stone that has been left unturned.  Let me be quick to say that not all dementia patients end up in nursing homes.  Caregiving story endings vary from case to case, very much the result of the many factors both patients and caregivers bring to their own unique circumstances.

The practicality of the book is manifest in addressing particular experiences from both positive and negative perspectives. This is done throughout the book as it anticipates a wide variety of responses and reactions from patients and caregivers alike.  It progresses from dealing with initial manifestations of the disease through its more serious and complex concerns and on to end-of-life care.  The development of this style moves from what to do about things like home safety, nutritional needs, medical needs, and personal hygiene on to “sun downing” (worsening behavior as a day moves toward its end) and “shadowing” (a clinging trailing after the caregiver) and on to more serious behaviors as wandering, combativeness, and inappropriate sexual behavior.  These are only a smattering of the features presented throughout the book.  The work is chock-full of all sorts of valuable information.  A very simplified example of considering various sides of a problem might go something like this:  “If your father is doing X, try redirecting him toward trying Y.  If it works, and you can keep reinforcing it, all well and good.  If he is unsuccessful or refuses to try Y, try Z.  If the problem persists and remains unresolved, you may have to learn to tolerate X to avoid frustrating and angering the both of you.”  (Not a direct quote)

What comes through quite clearly is that the caregiver/s must make changes in themselves as their loved ones become less and less the persons we knew them to be.  Our intervention helps to support them and compensate for what they have lost.  This is not easy.  It is emotionally costly.  It becomes the nub for the necessity of self-care for the caregiver/s.  There is a whole chapter on “Getting Outside Help”.  The authors draw on a tremendous fund of knowledge and experience in their offerings of factual knowledge about dementia and practical suggestions pertinent to caregiving.  In many places, there are “Who to call or contact” directives regarding particular concerns.  Of course, readers/caregivers will need to locate those types of resources available in their own area.

The chapter entitled “Special Arrangements If You Become Ill” and its subsection “In the Event of Your Death” both contain practical information for anyone whether or not they are currently in a caregiving role.  The COVID pandemic has served to heighten our awareness for the need of preparedness in the possibility of emergency.  It is to be hoped that it also has brought home to us the preciousness of our loving connections so that we do not over-burden our loved ones through our lack of practical foresight.  There is another whole chapter “Caring for Yourself”. There is also a chapter regarding the needs of children and teenagers who may be living in a home setting where caregiving is being done.  There are also sections and chapters on end-of-life care, financial and legal issues, and considerations about relocating care outside the home.

It is not until Chapter 17 (“Preventing and Delaying Cognitive Decline”) that the book returns to a more specifically medical and scientific consideration of dementia and its causes (Chapter 18) and research about dementia (Chapter 19).

In drafting this review, it was challenging for me to try to choose items that might grab a reader’s/caregiver’s attention in order to reveal the book’s appeal.  I do hope I have done it enough justice so that you might consider borrowing a copy through the library you patronize or purchasing a copy for yourself.  I have seen copies of the book on the shelves of our independent bookstores (Innisfree Bookshop in Meredith, Bayswater Books in Center Harbor, and Gibson’s Bookstore in Concord).  Of course, it is readily available through Amazon and Books A Million.  Quite simply, it is a superb guide, and I recommend it most highly.

~Written by Guy Tillson, MDiv, MA, Hospice Chaplain