THE PATIENTS, THEIR STORIES, AND THE EXPERIENCES of caregivers confronting terminal dementia are based on my experiences caring for elderly patients. I am greatly indebted to the many people who shared their stories, including the staff at Steere House and the families of those who died with Oscar at their bedside. I truly believe that readers will be as moved by these accounts as I was when I first heard them and I have tried to remain as faithful to them as possible. I apologize for any factual errors that I have made in retelling the stories and in transcribing our interviews. If I have made errors, please know that they were unintentional.
Please note that for narrative purposes I have made some changes that depart from actual events. Moreover, in the interest of preserving confidentiality in patients with end-stage dementia, I have changed some names and modified some backgrounds to protect identities. Additionally, some of the characters that appear in this book are composites of multiple patients. Nevertheless, the experiences represented in this book are based on real-life patients and their caregivers whom I have been fortunate to care for over the years.
Finally, though I was skeptical early on, Oscar the cats peculiar ability appears to be as real as it is mysterious, and he continues to regularly hold vigils over departing patients. It is my hope that readers will allow him to continue his good work unencumbered for as long as he chooses and will forgive the occasional mistakes that he makes from time to time. After allno human (or cat) is perfect.
Animals are such agreeable friends
they ask no questions, they pass no criticisms.
GEORGE ELIOT
IF YOU LOVE YOUR JOB, ON THE BEST DAYS YOUR WORKPLACE can seem beautiful, no matter how it might look to the rest of the world. An oilman looks at a flat, dusty plain and sees the potential for untapped fuel. A firefighter sees a burning building and runs into it, adrenaline surging, eager to be of use. A truckers love affair is with the open road, the time alone with his thoughtsthe journey and the destination.
Im a geriatrician and I work on the third floor of the Steere House Nursing and Rehabilitation Center in downtown Providence. People tell me they would find my job depressing, but Im always a little puzzled by that. Looking at my patients and their families, I have a remarkable view not just of lives well lived, but of deep commitment and love. I wouldnt trade that for the world. Sure, sometimes Im caring for people at their worst, but Im also blessed to be with them at their best.
My parents, both doctors, thought I was crazy for going into geriatrics. The family business has always been pediatricsmy mother and uncle are pediatricians, as was my grandfather. I think there was always this sense that I was choosing the wrong end of the life continuum to stake out my career. Arent children so much cuter? my mother would say.
I thought of going into pediatrics. I love children and babies, and have two little ones of my own. The difference for me has always been the stories. Children are a blank canvas, portraits waiting to be drawn. When we look at them, their lives just beginning, we feel a sense of renewal and an expanse of infinite possibility.
My older patients, on the other hand, are like rich paintings and boy, do they have stories to tell. On my best days I can look at them and see all the way back to their childhood. I think of their parents (long gone now), the places theyve been, the things theyve seen. To me its like looking through the other end of a telescope, back to the beginning.
Thats why Steere House looks beautiful to methat and the fact that its a pretty nice place, as nursing homes go. The large, atrium-like windows flood each floor with light on sunny days, and on most days theres music coming from the piano in the lobby. And then theres Oscar. Id like to say I was the first one to notice his peculiar abilitiesbut I wasnt. Thankfully there were others who were more astute.
THE UNIT had been empty that summer morning back in 2006, except for a pair of eyes that glared at me from atop the nurses desk. Like a warden cautiously evaluating a visitor to her facility, the questioning eyes sized me up to determine if Id pose a risk.
Hello, Maya. How are you?
The pretty white cat made no move to greet me; she was consumed by the act of licking her front paws.
Where is everyone, Maya?
Aside from the cat, the third floor was strangely quiet. The hardwood-tiled corridors were vacant; the only signs of life were a few randomly placed walkers parked next to patients doors. Empty now, these four-sided walkers seemed strange and unwieldy, like an imaginative childs Tinkertoy creation abandoned after play. At the far end of the east corridor, the morning light shone through the large picture windows, illuminating a broad swatch of the hallway.
I was looking for Mary Miranda, the day shift nurse. Mary is the source of all knowledge on the unit, a central intelligence agent who knows not just the story of every patient, but of Steere House itself. Though shes not technically in charge, theres little doubt among the physicians and staff as to who actually runs the floor. Mary is the maternal figure for each resident and she is fiercely protective of her children. Nothing happens on the unit without her knowing about it. Even her supervisors have been known to defer to her.
The doors to the residents rooms are generally closed this early in the morning, and room 322, where Mary was performing AM care on her patient, was no exception.
I knocked on the door and heard a muffled voice telling me to hold on. As I waited in the hallway, I studied the corkboard display of family pictures attached to the wall outside Brenda Smiths room.
Mrs. Smiths full name, gertrude brenda smith, and her date of birth, JANUARY 21, 1918, were stenciled in block letters on a rectangular piece of paper at the top of the corkboard. Each letter had been cut from construction paper and meticulously decorated with beads and other trinkets, the loving effort of some grandchild no doubt. Underneath the artwork there was a black-and-white photograph of a beautiful young woman in her early twenties. She wore dark lipstick that contrasted with her pale face, and she was fashionably dressed in a 1940s summer outfit. She was walking arm-in-arm with a handsome man in a Navy uniform. A parasol hung on her other arm. I imagined them in a park on a warm summers afternoon shortly after the war. I studied their faces. They were happy, and clearly in love.
Beneath that picture was a second photograph of the same couple years later with two young children. This one was in color, the faded stock of an earlier day. His hair had receded some and hers now revealed a few streaks of gray. This picture contained a promise of a different sort. They werent just young lovers now; they were proud parents, thinking of a future larger than their own.
The last picture in the collection was of Mrs. Smith in her later years, meticulously dressed, her silver hair neatly pulled back below a tastefully chosen hat. Her husband was gone, but she was surrounded by several generations. A banner hung in the background proclaimed HAPPY 80 TH BIRTHDAY, GRANDMA . Eight years had passed since then.
I knocked again and made my way inside where Mary was tending to her patient. Gone was the vibrant, well-dressed grandma of the birthday picture. In her place was a smaller replica of the woman that was. Until I worked with patients in the late stages of Alzheimers the expression a shadow of her former self was just a clich. This is what I saw with Mrs. Smith and so many of the other residents here. But behind that shadow I still saw the substance, even if she seemed no longer to see me.