Below is a list of Resources that I really, really love.
Advice to Future Corpses and Those Who Love Them, Sallie Tisdale, a Buddhist teacher and hospice nurse. I cannot tell you how much I love this book. Or maybe I just did? But here is an introduction and excerpt that give you a sense of it. Just the advice on how to listen to a person who is in the process is a treasure.
A Beginner's Guide to the End, BJ Miller, Shoshana Berger. Just so damned useful and brilliant demystification of all the steps. This is super practical, given with real compassion and wisdom: "Death accepts us just as we are....everything is welcome--every thought and every feeling from glorious to foul and every shade in between--since everything must go. No one can fail in it. Total embrace is death's core dignity."
The Art of Dying Well: A Practical Guide to a Good End of Life, Katy Butler. As advertised. The stories and insights are really lovely. And the glossary of terms used by insiders is both fascinating and useful.
The Five Invitations: Discovering What Death Can Teach Us About Living Fully, Frank Ostaseki. The head of Zen Hospice Center in San Francisco. Incredible perspective and wisdom, beautiful stories.
Being Mortal, Atul Gawande. This one is really important to me--he is such a great writer, and as a surgeon he illuminates the whole medical system that presses to extending "life" rather than supporting real conversations and choices about quality of life. People opt for a DNR and feel relief that they checked that box and it will all be fine, but there are sooooo many choices to make way before a DNR comes into play!
The Beauty of What Remains: How Our Greatest Fear Becomes Our Greatest Gift, Rabbi Steve Leder. Like the other authors, Leder draws on his professional experience and his own experience as the son of a proud man brought to his end by Alzheimer's.
[Dementia Health Care Directive][2] It is what it says it is, offering anyone the chance to think through choices that could be very different at different stages of Dementia. It has been helpful to me as I consider my mother's progression through dementia along with her physical decline. [2]: http://dementia-directive.org/
They're Your Parents, Too!: How Siblings Can Survive Their Parents' Aging Without Driving Each Other Crazy, Francine Russo. I am solo dealing with my mother, but the stories in this book are illuminating and I think everyone can see slivers of their own family story reflected back at them. It is a great book for siblings to read together, allowing discussions about topics that might otherwise be really painful.
Community Palliative Care of Northern New Mexico Janet Smith is the founder and lead of this group, and she is really a pioneer in the field of Palliative care here in NM. I am working with her now, and she is a boon to me and all the caregivers. If you are in Santa Fe and can think about palliative care--not just for end stages, but for support as you or someone you love goes through extended treatment/convalescence. . . find her.
Improv and Alzheimers-TED Talk Improv artists Karen Stobbe and Mondy Carter share how they use the rules of improvisation to break through conventional caregiving techniques and open up new worlds for persons with dementia.
Alive Inside: A Story of Music and Memory, available on Netflix
NPR piece on Music Therapy and Dementia
Ballerina with Alzheimer's called to dance by Swan Lake music.
Narcisism and Its Discontents, by psychologist Ramani Durvasula.