Taking the leap

I’ve always been more of a leaper than a stepper. I’m eager to get my hands dirty and feet wet, and believe I’ll figure it out along the way. I want to get started rather than sit and discuss different options. I want to try new things, even if I’m bad at them (I usually am). Not many people seem to be like me: most want to know the facts before they jump in to a new situation. Sometimes the risk of taking a leap is that you end up in water over your head and can’t keep treading. Caregiving is a bit of a mix of leaping and stepping—but in both cases, you never really know what’s up next.

Dementia is a cruel disease: there’s a predictable progression and decline, but it feels so simplistic to nod along and reassure caregivers that yes, the confusion in the afternoon is normal. Yes, the burned food and hidden car keys are normal. In reality, there’s nothing normal about seeing someone’s personhood slowly whittled down by amyloid plaque. Forgetfulness is common with age—but the implications of its progression are very painful.

It starts with impaired short term memory, difficulty managing the cadre of medications and finances. Clinicians start trying to intervene, to slow the decline of this inevitably progressive disease. Diets are changed, medications are added and subtracted. Millions of crossword puzzles and sudoku games are played, reminder notes placed around the house—all while knowing that if the patient doesn’t die from something else first, their brain will continue to decline. After a person fails to recognize family and friends, they lose the ability to feed themselves, the ability to put food in their mouth and chew. At the very end, the patient loses the ability to smile.

At first, I focus on being there for patients. In the early stages, some patients realize they are losing skills, forgetting appointments. They experience exquisite pain of seeing themselves decline until they can no longer recognize the person they used to be. Then, I also focus on being there for the caregivers. Some caregivers have to make the very difficult decision to move their loved one into a care facility.

Even through these impossible moments, there is still triumph. The husband who can still write, “I love my wife,” on a piece of paper. The songs they both remember and sing together. Sometimes that one additional point on a cognitive test feels like such a hard won victory. The months of changing their habits and titrating medications has made the single point on an arbitrary test possible. Many great leaps with just a small step in return.

As physicians, it is our duty and honor to bear witness to these moments of victory and defeat. Accepting that despite years of training, we cannot fix many things and sometimes all that’s left to do is leap with patients and caregivers.

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.