Every Time is the First Time…until it’s not.

“Every Time is the First Time” is a core coping tenet from our book A Caregiver’s Well-Being. It struck me today that while this was so helpful in managing my frustration with Mom’s forgetfulness and general memory loss, there was an opposite sad reality in our dementia walk that often went unnoticed.  The fact was, we never knew that something was “the last time” until it was past.  Unlike our youngest child’s milestones…the “last Kindergarten graduation” or the “last driver’s license test,” with dementia, there was no predictable timeline for when certain skills, memories, habits would be lost. So, there wasn’t an opportunity to plan for it, to schedule one last great out, one more Friday night ice cream……those usual, habitual shared moments each just one by one were gone.

Some losses were expected…like when we could no longer physically manage bringing Mom over to our house.  She loved “getting out” and found being in our house reassuring, as she somehow had developed the belief that we had moved.  Bringing her over for holidays or a pretty Sunday in the yard took effort but the reward was seeing her delight.  Getting in and out of the house required managing four steps which became more difficult as Mom’s ability to process how to descend steps diminished. After COVID hit, Mom did not come over for over a year.  In that time, Mom “forgot” how to climb and descend stairs and it became clear we could no longer bring her over.  It was sad but we also, over that year, came to expect the change.

Other losses seemed to creep up on us and the emotional toll was hard.  My brother, after one visit to Mom, shared that he cried upon leaving realizing he very well may have already had this last “real” conversation with Mom….and it had not been his current visit.   This visit had consisted of confusion and conversation that was mostly “word salad.”  Reflecting on his comment, I found myself searching my own memory for when the last “real conversation” I had had might have been and could not pin it down.

Realizations such as these can sadden us as we experience the bit by bit grieving common in a walk with dementia, but they can also offer us opportunities to become more intentional or mindful when we are spending time together to really notice and mark the small joys. Bringing Mom fresh flowers, for example, would always lead to her lighting up and smiling as if seeing their colors and beauty for the first time. Once we realized this, we made it a point to treat every flower delivery like it was the “first time” for Mom and share in the simple pleasure of her wonder and awe in the moment. Pausing to be present in these small but joyful moments can help to lighten our walk and give us opportunities to treasure what we have together in the midst of what we are losing.