Please bring me one more moment with my mother that is like it used to be — before she couldn’t remember.
Signed, Martie Moore
I was responding to a posting from a high school friend on social media. The picture of an old fashioned typewriter with the caption, “Type ‘Dear Santa, For Christmas, please bring me … ‘” with the instructions to finish the sentence.
Most people asked for a lot of wine, some for health and well-being. My post was for one last memory of how it used to be. My post resulted in a few sad faced emojis given to it. My mom was diagnosed with dementia several years ago.
As a clinician and healthcare leader, I have spent my whole career guiding, learning and researching on how to advance healthcare in a safe and compassionate manner. I looked to the evidence and at times contributed to it. I believed in patient and family engagement. I still do.
I worked to develop cultures of partnership with effective listening to assure the highest level of care possible. The teams that I was proud to be a part of worked hard to support individuals and their loved ones, to guide them through this new world of changed behaviors and patterns of life.
So when the diagnosis was confirmed in my own mother, I thought that I, of all of the people at that moment, was prepared to face the journey. So many times as healthcare providers, we fail to see how little we really know.
I was not. I am not.
I was not prepared for the grief caused by the loss of a thousand moments. Having to train myself to not say, “Remember, Mom.” I was not prepared for the awkwardness we would have in our conversations as the disease has progressed. Having to learn to tell stories that she could listen to and not expect her to contribute or answer questions.
I was not prepared to watch her waste away to the point that her pants fell off her body as she walked. Having to think about all of the creative ways that calories could be consumed in whatever manner she would consume them. I was not prepared to watch my once graceful mother, belch and chew with her mouth open like one of our beloved cows on the farm.
I was not prepared for the lack of knowledge on care and management of an individual with dementia that we have met on this journey with my mother. Her primary care physician who knew very little about the specialized medications and side effects being prescribed by others.
Yet, she was the one to manage and provide oversight. One of the medications while it was to boost her memory, actually suppressed her appetite.
I was not prepared for how much effort and energy it takes as a family member to find useful information and resources. Type in “dementia” into a search engine and you would argue there is an abundance of information. In fact Google can provide, 101,100,000 sites in 0.77 seconds on the word dementia. It isn’t that there are not data points at my fingertips. I was looking for expertise, knowledge, insight and compassion.
Even the best doctors we saw, we saw in moments of this journey. They are a sound bite in this story of dementia and Mom. I turned to you my colleagues in long-term care, who live and breathe every day the work of walking alongside us in this journey of dementia. You have given me expertise, knowledge, insight and, most importantly, compassion. For that I am forever grateful.
I am not prepared to say that just because I have insider access and capability — I was blessed. I believe that all should be blessed. Within all of you is great knowledge and expertise, but it is kept within segments of associations, conferences and bodies of healthcare settings.
Frankly, we do not play and share well with others in this space we call healthcare in the United States. I believe, we the people cannot afford not to come together to create safety and health networks for the millions of us who will need those networks sooner than we may realize.
I have a new request for you, Santa:
Please bring people together in the communities they reside to work together. To discover what the other is doing in the care and support of individuals and their loved ones. To learn and use their discoveries beyond their walls. To create better ways of caring for our elderly and most vulnerable. To listen in ways that we have not done beforehand. To act in unison.
I know Santa, that is a huge ask, but I know it just takes small steps to make great strides. Grant me the wish of all of us to see beyond ourselves to a larger body of work.
Martie L. Moore, MAOM, RN, CPHQ, has been an executive healthcare leader for more than 20 years. She has served on advisory boards for the National Pressure Ulcer Advisory Panel and the American Nurses Association, and she currently serves on the Dean’s Advisory Board at the University of Central Florida College of Nursing. She recently was honored by Saint’s Martin’s University with an honorary doctorate degree for her service and accomplishments in advancing healthcare.