As MS expands its assault on the brain, MS becomes a lost world of mental confusion and memories disconnected from time. The ‘well world’ however, remains the real world. I, as a spouse and caregiver, have to try and move between the two.
Planning demands that I anticipate Patti’s needs. Beyond the physical symptoms of MS there is memory loss, erosion of cognitive and reasoning abilities, erosion of the more intangibles such as inability to attach ‘proper’ reactions to emotions, or even levels of reaction. Much work goes into even the simplest of outings to improve its success. ... Yet, if asked, Patti cannot recall, most of the time, what any outing was about.
Transition from visiting, for me, is about shifting from that world of shadows, where pieces of dreams are dead but not dead, and then back into light. I always find it difficult to switch caregiving on and off. Pieces of me get stuck. Some days I’m so lost in thought, I find myself sitting in my car before driving away and suddenly its several minutes later. I often drive on back roads home to avoid traffic and any attention related driving decisions. The transformation back to interacting with the ‘well world’ is more challenging some days than others.