I sighed replying, “Unfortunately not. The best scenario is that donezepil will slow its progression.”
My patient’s daughter looked so defeated as she slumped back into her seat. Her mother playfully interjected, “Oh hush up, Girl! Maybe I will forget you owe me money!” The room immediately erupted with laughter. The timing of this banter could not be more punctual. The lack of insight in dementia is kind that way. The patient often isn’t aware of the severity and impact of their diagnosis. The weight of its stamp is carried mostly by loved ones and caregivers. What does this mean? Will this happen to me? What about the house and other finances? Can she live alone? What about driving? Who will care for her once symptoms get worse? These questions were plastered all over her facial expression and body language.
At the intersection between knowledge and understanding lies the essence of healing. Not all that doctors learn in school can save someone’s life. In fact, some of it is “for information only.” In neurology, there are many conditions, like dementia and Lou Gehrig’s disease*, where we are taught to recognize symptoms, but there is no cure. While symptom management is the mainstay of what we do, our role involves ushering our patients through incurable conditions with dignity. Personal experience is the best teacher of empathy. It is reassuring to patients and their families to hear “I have gone through that too.” They trust your advice more. You’re no longer a bookworm with a stethoscope spouting big words that speak nothing to the loss they feel. Instead, you become a knowledgeable guide helping them navigate the darkness of their fears, toting hope’s light along the way.
What will be fascinating to witness is this role-shifting between physician and granddaughter within me. Perhaps, there will be a psychological schism of sort where Dr. Dee coaches Decontee away from irrational fears about her grandmother’s condition. I can’t lie. Even though I know most cases are sporadic and not hereditary, I thought once what if Dad gets dementia. Initially, I was embarrassed by this thought. Then came the epiphany. It is this helplessness that drives the absence of reason. Therefore, providing support to caregivers plants them in reality, helping them to brace against the unknown. In the end, the joke’s on dementia as the family is on the field armed with “Dr. Coach’s plays.” All the while, the patient’s in the stands unknowingly cheering on the entire team.
*Dementia is an irreversible cause of memory loss. It is more commonly diagnosed in individuals over 65 and attacks short-term memory, new memory and language formation. There is also abnormality in the visuo-spatial system, which can impact daily tasks, such as driving. Long-term memory is often preserved until end stage. The most common type of dementia is Alzheimer’s disease.
Lou Gehrig’s disease, also know as amyotrophic lateral sclerosis (ALS) is a terminal condition where motor nerve cells die out spontaneously. The most common symptom is muscle twitching also known as fasciculations. What often leads to death is paralysis of the diaphragm (breathing muscle) as it loses its motor supply.