Why did you become a geriatrician?
I’ve always liked working with seniors and love hearing about the lessons they have for those in younger generations . You only need to ask a World War II veteran about his experiences during the war to become instantly mesmerized. There are other reasons why geriatrics is appealing. Figuring out how to better care for our nations oldest is perhaps the largest health care challenge of our generation. The silver tsunami is upon us and we are clearly not prepared.
Why did you write the New England Journal of Medicine essay?
Truthfully, I was having a bad day. A number of projects I was working on at the time were not going well for me and I needed to clear my head. Oscar’s story had been in the back of my mind for sometime. I recall mentioning to a colleague over lunch a few weeks prior that it would be neat to write it up for a publication like Reader’s Digest.
Why did you send the essay to the New England Journal of Medicine and were you surprised when they published it?
Sometimes I still wonder why they published it. Oscar’s story was never intended to be hard science, but rather a thought provoking piece about end of life care and the tragedy of dying with dementia. I honestly thought the editors at the NEJM would send me some stationary with their logo on it with the following text…”We are sorry to inform you…” It’s so strange how life works sometimes.
Why write a book?
In the media blitz that followed Oscar’s release, I tried to convey several messages that I thought were important about Oscar and what he does. I spoke to the media about the importance that animal companionship provides for the elderly and the tragedy that befalls caregivers living with dementia patients. I also spoke of the importance of culture change in the nursing home (making nursing homes more like a home than a nursing home).Unfortunately, many of these important messages ended up on the editing room floor. Instead we got headlines like “If Oscar’s in your bed, you’re dead!” The book has allowed me to expound on some of these important points.
What is your favorite chapter in the book?
There are so many chapters in the book that have meaning for me. In a way, I have tried to write each chapter with a different message for readers. Trying to determine which chapter is my favorite is a little like picking your favorite child.
In the book, you talk about your own battle with arthritis. How has your own illness changed you as a doctor?
You can’t help but be changed by medical illness and I’m quite sure it’s made me a more empathetic doctor. I’ve had psoriatic arthritis since age 27 and I am fully aware of what a patient goes through when they have a chronic medical condition. I’ve lived with daily chronic pain and functional loss. I’ve sat in medical offices watching the minute hand trudge around the clock wondering why doctors are always running behind. Most importantly, I also know what it’s like to not know what the future holds in store for you. Will I be able to walk my daughter down the aisle one day when she gets married? Will I be able to coach my son’s soccer team? These are all questions that linger despite the better treatments that exist today.
If you too are dealing with arthritis, I’ve found great resources at the Arthritis Foundation’s Website (www.arthritis.org) and I urge you to go there to learn more about these disabling diseases.
What would you advise patients who have just been diagnosed with dementia?
I’ll offer two pieces of advice:
First, find a doctor—even if it is your primary care doctor– who won’t abandon you when there are no more tests to run. There are many “specialists” in the field of dementia who simply order a bunch of x-rays with a goal of making the diagnosis. In the end, the diagnosis doesn’t really matter (our treatments are unfortunately so limited that it doesn’t change what we do). You need someone who will stick with you and your family throughout the disease progression.
Secondly, make sure that you have communicated your wishes regarding end of life care with your family and your doctor while you still can do so. Even as memory becomes challenged in early stages of the disease, patients with dementia can still participate in decisions about feeding tubes, the aggressiveness of treatment, and whether or not resuscitation is warranted. Most importantly, know that doctors don’t necessarily like to have these discussions either because they take time or they have their own belief system that might be in contradiction to your own. Sometimes you need to push them into having these critical discussions.
What would you advise caregivers of patients with dementia.
As I mention in the epilogue of the book—caregiving is a 24 hour, 7 day a week responsibility. No one can ever go it alone for long and this is why so many caregivers actually succumb to illness before the patient with dementia does. It is critical to take care of yourself both physically and mentally. Find others to share the burden of caregiving if at all possible and utilize the support groups through your local Alzheimer’s Association chapter.
I do have a day job, one that is both satisfying and time consuming. Writing Oscar was a weekend and nighttime activity for me—one that took me the better part of one very tiring year. Still, I am fascinated by the elderly and the stories they have to tell so I am in the preparatory stages for Book number 2. Stay tuned…