Not quite the plan

on finding my groove as a 30 something single girl and caregiver for mom with dementia


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And the puzzles get easier.

Mom always enjoyed jigsaw puzzles.  I have fond childhood memories of working on puzzles with her through the winter.  For a few of them,  I even have vague memories of some of the images of the puzzle and the feeling that it would be impossibly difficult.  I suspect Mom was doing 99% of the work.

So in trying to find activities for Mom now, puzzles seemed an obvious choice.  Two years ago, my first pick was a 1500 piece Christmas puzzle that I thought would keep her occupied.  It did, for more than two months!  She frequently stopped me to exclaim,  this puzzle is a b-i-t-c-h-.  And be rather pleased to be using such a shocking term.  I think that puzzle might have been called a b-i-t-c-h- more times than my mom otherwise used that word in her entire life.  My sister and I helped and the three of us managed to finish.  Mom made some contributions but I realized that Mom was going to need easier puzzles. 

We experimented with 750 piece puzzles for adults that were still too difficult.  I found rows of similarly colored pieces covering our puzzle table, few of which ever found their way to connect with other pieces.   We started buying 500 piece puzzles.

I discovered that puzzles with huge swathes of the same color were out.  Mom simply gave up on those parts.  A beautiful scene of various colored fruits seemed a better fit so I bought that and Mom got a lot of it done on her own about a year ago now.  I was thrilled by her accomplishment.  We left it put together on the table for a month.  

Not long after that, I realized that Mom had no more sense of the edge pieces versus the middle pieces.  She was stacking up the pieces chaotically.  Still I encouraged her with extra large 300 piece puzzles.  I found myself putting them together while she moved pieces around on the table.

This Christmas I ordered a 36 piece puzzle made for adults with dementia.  Mom has done it with her caregiver 5 times now.  She needs more encouragement and the occasional nudge,  but she is still doing her puzzles. 

Two years.  From 1500 to 36 pieces.  The progression of this illness shocks me. 

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The good china.

When Mom and I consolidated households, we had far too many of most items.  Some had to go– whether to storage or the donation bin or the trash.  In sorting through the piles, I was struck by how many things we both had an excess of.  She and I both had multiple sets of dishes and multiple sets of silverware.   In general these kinds of things were sorted into the good set and the everyday set.  And typically, we use the everyday set 360 days of the year and the good set perhaps just on a handful of holidays and special occasions.

When I looked at our silverware, it was clear to me that my most-likely-from-IKEA sets were heading to the donation pile at best, and that we should choose one of those belonging to Mom.  And then there was the question of which.  In assessing our choices, it did not take me long to settle on the good silverware.  So the good set became our everyday set.  And that has struck me as a good choice many times since.

Often in life, we go with the everyday rather than the special. And yet, these days, I find myself focused more on enjoying the best that we can, for the time that remains to enjoy it.

Given a year remaining of life, or of memory, why not bring out the good china? Every day is special once we recognize that a finite number remain.


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How to love.

Some days are tough with Mom.  For much of the past six months, I have had a lot less time and energy for her as my work demands have increased.  At the same time, Mom’s illness has gotten only worse and communication has become quite simple.

And yet, for the time being, Mom and I can communicate in what I am coming to feel are some of the most important ways.  She feels loved.  She feels taken care of.  She knows to trust me.

I know this is not everyone’s experience with dementia and I count myself incredibly lucky to be thus far avoiding some of the bad temperedness, aggression and other symptoms that often accompany this illness.  Yet it is still hard and often heartbreaking.  I spent a lot of time this November finding myself crying in reaction to so many of my interactions with Mom.

But, the other morning my mother said probably the most beautiful thing anyone has ever said to me.  First thing in the morning when I saw Mom, she gave me a huge hug and said, “you really know how to love people.”  We both teared up as she hugged me with a long hug.

These words were a gift.  They were a gift that I know I need to lock away in a tight memory box for quickly approaching days when she can no longer express herself with words. I will need to remember this moment, for both of us.