Nicci Gerrard and The Last Ocean

If you read just one book about dementia, it should be this one.  For you dementia carers out there, I think this is the best book to give your friends, relatives, and strangers walking down the street a clear picture of your experience.  Originally published in the UK under the title, What Dementia Teaches Us About Love, The Last Ocean is a brilliant mix of memoir and reportage.  Gerrard's writing is poetic and her research thorough and thoughtful. 

The chapters of the book focus on different aspects of her personal journey with her father's dementia as well as a more general experience of the trajectory of dementia.  The book moves from "Facing Up" and "Getting older, through issues related to "Shame" and "Connecting through the Arts" to "Saying Goodbye" and "Death."

Herewith are some sections I marked in the copy I purchased as soon as I read The New York Times interview with Nicci Gerrard:

About researcher Dr. Ezekiel Emanuel, "As a doctor, Emanuel has seen too many people holding on to life at all costs, until it is a ragged, tattered, excruciating thing." (p. 38)

"To be human is to be dependent; this isn't a weakness but a necessary condition of being alive . . Decline is part of who we are; we are always impermanent, always growing towards our end, and old age is part of what gives life its necessary boundary and shape. . . If life is an adventure, old age perhaps demands the most courage and endurance."  (pp. 40-1)

The chapter on being a carer was especially meaningful to me:
"A woman who has been a wife for fifty years (or of course the man who has been a husband), . . . finds herself taking on the tasks that used to be his, making decisions he used to make, taking over the finances, covering up for his slips. . . . she tries not to become impatient when he repeats himself -- or shows her impatience and then feels guilty. . . . She tries not to mind that what she does, day in and day out, is unseen, unvalued:  nobody to see her or tell her she is doing a good job.  She tries not to resent the fact that she is giving up things for a person who doesn't understand her self-relinquishment." (p. 116)

"The writer and professor of nursing Sally Gadow believes that caring is the process of entering another's vulnerability and brokenness and 'breaking oneself.'" (p. 119)

"For surely the endeavour -- the never-quite-possible endeavour -- for a carer is to tread the quicksand strip of middle ground between the abandonment of the self in the name of love and duty and the unyielding protection of the self in the name of survival. . . . To have courage, stamina, compassion, empathy, to be in it for the long haul and yet not to be wrecked to the point of self-extinction." (p. 122)

"Dementia is a particularly long farewell to the self. . . . There's an anticipated, ambiguous grief; a premature mourning of the self, or of the beloved other. . . .To mourn someone who is still alive brings a particular, complicated pain." (pp.207-8)