Years ago, one of my school-aged children explained the shifting cognition of Granddad as a kaleidoscope. My nine-year-old said,
You know mom being with Granddad is a lot like looking through the kaleidoscope. Most of the time you look in and can’t figure it out, but every once a while the light shoots straight through and then it is beautiful. So, I keep looking because you never know.
I thought it was an excellent analogy of the shift in cognition we encountered with Granddad. Sometimes he was just as we remembered, aware and on target with his speech but then things shifted and he was speaking from another space or place.
Research has validated Alzheimer’s disease and related dementias as neurodegenerative processes that take a person back in time—in a stage-like progression.1 The individual living with dementia is losing processing abilities in the order in which he/she gained them in cognitive development.
But here’s the rub—no one individual is solely in one stage, all the time—they slip back and forth. Sometimes they appear as fully cognizant and others as in cognitive decline.
An example came recently when a daughter asked,
Should I correct my mother when she forgets I am her daughter but calls me her best friend? Because sometimes I am her daughter. I never know when she is fully there.
This vacillation has been termed time travel.2 This newer conceptualization expands the linear staging to capture the fluctuations we see in the regression of our care partners’ cognitive, emotional, physical, social and functional abilities. Neurodegeneration continues to progress but in a multi-dimensional way—a bit like the dimensions of a kaleidoscope.
There will be moments when the spouse you remember can remember just how to do a task, and others when he no longer does. One moment you are the daughter, the next she doesn’t remember your name. Sometimes she is the same empathetic friend you knew, others—she is self-focused and unable to listen to your feelings.
For many of us, the variability makes this journey more painful. We would prefer a straight and defined path. Particularly in early stages when it is easy to slip back into denial; then wham—dementia is looking you square in the face. In good times, a care partner can treasure the moments of lucidity and function. Those same moments can make a care partner question their decision to get help and question the diagnosis.
As care partners, we too may need to time travel—back to the days of good times. Memorializing the photos of our past, and taking note of the light shining through when it does. We keep looking because you never know when the light will shine straight through.
1Reisberg B, Ferris S, Franssen E: Functional degenerative stages in dementia of the Alzheimer’s type appear to reverse normal human development. Biological Psychiatry. 1986; 1319-1321.
2Christopher J. Johnson, PhD Roxanna H. Johnson, MS, CTRS, American Journal of Alzheimer’s Disease 87 Volume 15, Number 2, March/April 2000, 87-93.