The most unexpected observation I've made while working with dementia patients is the way some of them repeat things they've said in the past. I'm not talking about just the words or the ideas here. When I hear something for a second, third, or twenty-seventh time, everything about it is the same: the word choice, the pauses between the words, the body movements. It's like hitting 'rewind' on a video and watching the exact same thing happen again.
When I started working with these patients, my understanding of the memory loss caused by dementia resembled how I understood the memory loss experienced by a computer. Once gone, it never comes back.
But the reality of the cases I've seen is a little different. It's more like encountering an unexpected roadblock along a familiar route: the destination is still there but the obvious route is impassable. Unlike with a computer, humans find many ways to arrive at the same place.
For us hospice volunteers, the lack of a past history with the patient turns these moments into opportunity. If someone repeats back a story or even just a sentence in the exact way it was done a week ago, I understand I've discovered a new route to access an old memory.
But for family and friends of the ill, these moments are yet another difficult reminder in a long, steady trajectory of loss. For them, the journey means just as much as arriving at the destination. A familiar pathway gone is one never to be shared again.
It pains me to have so little to offer a friend or family member in this situation. Since everyone is different to begin with, there are no sure patterns the disease follows and no real methods to help the situation. From my experience, the only suggestion I have is to try as many ways as possible to meet someone where they are. Try to create some familiarity by wearing familiar clothes, sharing past meals, or going to favorite places. Music is often cited as a way to help dementia patients return to a previous time while others use techniques perfected by improv comics to communicate with their loved ones. These techniques are all effective to varying degrees but, again, no single method guarantees anything.
It's soul-crushing work at times to keep trying what is not sure to work. And yet when someone is lost, the only way to help is to find out where they are and go out to meet them. The challenge is significant because the illness brings relentless darkness. But from what I've seen in my short time as a volunteer, the family and friends who do what they can to join their loved one in a confusing world find ways to make those last days a meaningful and sacred time.
