Nurse: “Do you have a pacemaker?”
Patient: “No, but I do have a cell phone.”
A few days ago a resident gave me a small bell tied to a string. She said that I should ring the bell to know what I mean to her.
This is what that bell tells me every time it rings: “I may not remember your name but thank you for being here for me, keeping me safe. I may not know exactly what you do for me but I do know that when I see you I smile and I laugh. You may fade from my thoughts when you walk away but you are always in my heart guiding me to experience joy in my every day. And when you leave here after a long shift feeling as though you may never recover from the exhaustion of being a nurse, ring this bell and know that you made a difference in one life today.”
I keep this tiny bell on a string in my car so that every time I leave the office I am reminded of making a difference in at least one life every day.
I have the best job in the world. I get to help amazing people live a full dignified life with Alzheimer’s Disease. The people who shaped our world into the amazing place it is are now shaping my world as I continue to hold theirs into shape. It is a fascinating cycle of learning how to let the lives of others inspire my imagination while simultaneously being an anchor for them to hold on to reality. It is often like trying to direct a movie where none of the actors speak the same language as each other or the same language as me. But in the middle of all this chaos are real stories.
A resident brought a DVD set to me stating, “I have no need of this. I was there, in the control room, for every Apollo mission. Maybe you want to see this.” So I graciously accepted the set. We went on to discuss his work with NASA and the space program. He agreed the only thing holding me back from being an astronaut is the fact that I can’t do math. Our mutual laughter made his story my story.
This is how Alzheimer’s Disease should be treated. With stories not drugs and isolation from the world. Stories should be fostered for as long as someone can continue to tell them. It is how we connect to them and their past as the past slowly fades from their stories.
In my mind, few other entities embody the spirit of shaping our world like NASA. They are the epitome of adventure and exploration. It is my pleasure to make life worthwhile for some one who was mission control. After all, he helped make life worthwhile for me. I consider it a great honor to be the person who listens to the stories of these great men and women.
Nurses are supposed to be the unsung heroes providing care, quietly doing whatever is necessary. Nurses have always kept the secrets of our society, keeping level heads in crisis.
One of the biggest secrets is that Alzheimer’s is not tragic all the time. There is laughter, there is love. And I’m tired of being an unsung hero. I want to be a loud, boisterous, unconventional hero that sings terribly and off-key. I want you to hear my voice about Alzheimer’s and Dementia.
If you have Alzheimer’s, you have permission to be happy. If you are caring for a loved one with Alzheimer’s you have permission and a right to feel joy. Quit letting society tell us we are unsung. Raise your voice with Nurse Bitterpill in shattering the stigma of Dementia. There will be tragic moments. But the joy can easily outweigh them if you stay open to allowing them in.
I have a plan. I will be making a lot of noise. Make noise with me.
Nurse Bitterpill is in the process of publishing a book, Every Minute is a New Day. It is a long process (longer and more involved than I had anticipated). And an avenue to be vocal on behalf of my beautiful and joyous Alzheimer’s patients. It will not happen instantly. I do not have the luxury of cloistering myself away for six months without distraction to focus fully on writing. I am elbow deep in the real world of dementia every single day. In the trenches making life better for those suffering and have the audacity to be happy about it.
I don’t want to stop at just writing a book. I want to keep raising my voice with film, education, mentorships, and other forms of media to get the word out that we can still smile, laugh, and live after a diagnosis of Alzheimer’s. With a new business on the horizon, I plan on making everyone hear what I have to say even if means standing on street corners shouting to passersby that people with Alzheimer’s have a right to be happy. I am not fearless, I am determined. But if we all join together, we will be heard.
“Hope is a force as fragile as it is enduring. Hope and fear are forever entwined, not always on opposite sides of the spectrum. Hope can fuel fear and fear can fuel hope.” -Every Minute is A New Day.
17 days left to help fund the book.
Tell your friends, tell you mom. Let’s make this happen. Be a part of this message of hope.
Click here to help fund the book. As little as the cost of a latte can help.
Happy new year.
Ladies and Gentlemen,
My book Every Minute is a New Day has a crowdfunding page on Kickstarter. Please help spread the word and/or help fund this project. You all have my deepest appreciation. Visit https://www.kickstarter.com/projects/fuzzylizzard/every-minute-is-a-new-day and read about the project
Dear Beautiful Readers,
I would like to take a moment to announce that Nurse Bitterpill is in the process of publishing a book based on this blog. It will focus on the language of Dementia. Stay tuned for more information as this process unfolds.
Thank you all so much for the constant love and support you have given over the years. My hope is that this book will help families, friends, nurses, caregivers, doctors, and everyone better communicate with those affected by the many forms of Dementia.
Please feel free to submit quotes and/or stories about Dementia to NurseBitterpill@gmail.com and I will submit them on the blog.