She was a highly regarded CEO of a company she built from the ground up. Her husband and children were immensely proud of her accomplishments. They called her a superwoman as she made decisions right and left quickly and gracefully.
Then, they started noticing changes in her ability to process information and emotions. They were devastated when the diagnosis confirmed what they knew in their hearts was the truth: She had brain failure or dementia.
The first time I heard the term brain failure, I sat up in my chair. The speaker was pointing out that we openly speak of heart and kidney failure but hedge away from plain speaking when it comes to brain failure. We call it cognitive impairment or dementia. It is, in fact, brain failure.
According to recent studies, over 16 million people, or 40% of people aged 65 or older, have memory impairment or brain failure. Mild cognitive impairment represents a more severe form of memory deficit without functional impairments. A percentage of the 16 million people will progress further in the failure of their brain to dementia.
My mother was one of those individuals who progressed in her memory loss. She became more childlike, unable to process complex situations. She would say, “What will be, will be,” when she did not know how to respond to the conversation. Each time I would see her, I felt like I was experiencing grief through the loss of a thousand moments.
Walking alongside her after the diagnosis of brain failure was tough. I lived away, and the changes I would notice were glaring from visit to visit. Even though I knew better, I would say, remember Mom, or you remember when we went … I wanted my mom back as I remembered her, not as she did not remember.
Grief through the loss of a thousand moments is called, by some, long grief. Long grief is defined as being in a perpetual state of perceived loss. While my mother was alive, my provider, during my yearly exam, would ask me about any life changes. I would state that my mother has progressed with her dementia. She replied that it was too bad and moved on to her next question. It was a friend who recognized that I was in a perpetual state of grief; I was in long grief.
I share this with you because as I meet with families and hear their stories, it mirrors mine. They are in a state of perpetual grief, trying to cope as best as they can with their loved one’s brain failure. It is rare that when I ask them if they have support for their long grief, they say yes. Most do not recognize that they are grieving; they are just trying to survive.
We, as care providers, can do better in support of families who are dealing with a loved one who has brain failure. The first step is to be aware that they are in need and grieving through the loss of a thousand moments. We must stop being on autopilot and listen to what is being said and what is not.
Martie L. Moore, MAOM, RN, CPHQ, is the President/CEO of M2WL Consulting and Chief Health and Wellness Officer for Mary’s Woods. She has been an executive healthcare leader for more than 30 years. She has served on advisory boards for the National Pressure Injury Advisory Panel, American Nurses Association, Dean’s Advisory Board at the University of Central Florida College of Nursing and Sigma, International Honor Society for Nursing. She was honored by Saint Martin’s University with an honorary doctorate degree for her service and accomplishments in advancing healthcare. She recently published “The Leadership Sandwich,” now available on Amazon.
