Not quite the plan

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


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Holidays, assisted living style.

Well, much time has passed since I last posted here.  It’s been a blur of taking more time for myself including several trips, reinitiating my relationship with Nothusband, and job hunting for a new role.  Suddenly, though I find myself facing the complicated question of what to do about Christmas for Mom.  And for me.

Thanksgiving was both easy and hard.  It was hard to accept that holidays are simply going to look different from here on out.  But it was easy to find a way to be together. Sis, Nothusband and I cooked and brought her a plate of food and a bunch of fall flowers.  I bundled Mom up for a walk together. 

But Christmas is a whole other story.  Just four years ago, Mom would decorate a house full of Christmas trees, throw a couple of parties, shop for towers of Christmas gifts and do enough baking to give most of her acquaintances a box of cookies.  She loves Christmas. 

So the other night after work, Sis and I trekked up to the facility with an artificial tree, nonbreakable ornaments, and a box of other decorations.  It was a happy evening though I could not help but feel the difference for Mom as I hung every ornament on her tree.  But Mom was delighted.  I think of her comment to me years ago, when I asked why she put so much work into Christmas decorations.

“When I am near a Christmas tree, I am happy.”

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I follow her.

So Mom and I had her admissions interview at the facility this morning.  Is this how parents feel at their children’s school assessments?  It was a weird anxiety to present her well, make sure they saw how lovely she is. 

Happily, Mom did great.  She failed miserably to answer lots of the questions to test her cognitive skills– but her personality came through. She was pleasant, happy, connected with the admissions person and even made a joke.  I sat feeling like a proud momma. 

But my favorite moment was when Mom was asked who I was.  What was my name, or our relationship?  She struggled.  She knew it was an important question.  Finally, she figured out the answer:  “I follow her.”

Somehow I loved that response.  It was not that I am her daughter or sister or friend, all terms that she has used.  Not my name though she knows it most of the time.  But a real description of our relationship these days. 

Once I followed Mom.  Now Mom follows me. 


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A shopping trip with weight.

So, I had a list of errands to do yesterday.  Target.  Bed Bath and Beyond.  Michael’s.  Staples.  A relatively normal list of stores to run through on a Sunday afternoon.

And yet, halfway through the third store, the heaviness started to sink in.  The shopping trip was to pick up items to make Mom’s room at the new facility a little nicer or more organized.  On my list: a label maker to mark her belongings.  A couple more pairs of pants that fit to be sure she has enough clothes between laundry loads.  A cheap wall hanging picture frame that will hold several family photos on her wall.  A set of pretty sheets to fit a twin bed.

If you have been reading this blog for a while now, you will know that I have procrastinated this day.  But it’s arriving and I am trying to be prepared.

Buying the stuff of course is the easy part of the preparation.  Accepting that I will henceforth see Mom in a small locked facility and that she will likely end her life in such a place is a whole other thing to prepare for.  I know I am not ready.  This feels too much to be the beginning of the end. And who among us are ready to accept the end?  Who is ready to drop off the person who loved you and supported you, and say, these strangers will care for you now?

I do not regret the decision, but I regret the circumstances that bring me here.  It saddens me that we don’t know how to do better.  And that my life circumstances are such that I cannot do more.  

So, I buy soft new sheets and fake flowers to decorate Mom’s new room.  At least my once upon a time an interior designer mother will see some beauty in this increasing isolation.


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Wrong side of the bed.

I put Mom to bed almost every night.  On occasion, she heads there herself.  Every now and then, someone other than me does the tucking in.  But for most of the past couple of years, it has been me.  When she lets me, I help her into pajamas.  I pull back the covers, take off her glasses and set them on the dresser.

Tonight she was exhausted and before I could pull back the covers, she lay down on top of the bed.  The wrong side of the bed.  Everything in me recoiled at the sight of Mom on the left side inside of the right side where she belongs.

Mom has slept on the right side of the bed, well, always.  My dad had the left and Mom had the right.  This was true through various houses and room arrangements.  And I have watched her maintain her side clearly over the past couple of years, even with no one sleeping on the other side of the bed next to her.

Until tonight.  When she lay down to go to sleep on the wrong side of the bed.  I wanted to move her and yet, nothing about that would make sense– other than it fixing for a moment my need to keep things the same that they have always been.

But things are not the same.  As of today, Mom does not remember a habit of at 45 years.


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Ocean trip.

Mom has always loved the ocean.  She and my father used to live in a house with a beautiful ocean view and one of the many sad things about moving out to be with me took that aspect of life away from her. 

But, she and I both love the water and seek it out.  We have access to a harbor that we used to walk around often.  She always loved that but in our current house it is a bit further away and getting Mom out a bit more challeningat this stage. 

Last year, for Mother’s Day, we drove out to the ocean for a day.  It was a good day, one that I think I will always remember– until of course, I don’t.  We ate a picnic of cold pasta salad out of old ice cream containers,  sitting on beach towels.  Mom wanted to kick her shoes off and get her feet wet in the ocean.  She was delighted by just a few minutes with cold wet toes.  For weeks after, she brought up the beach trip and talked about going again.  It brought her joy.

In a fit of deciding that it was officially the end of winter for us, I took Mom this past weekend to the ocean.   I could not help but contrast this trip to that day last year.  She was overwhelmed at walking out onto the sand in her shoes.  There was no sitting on the beach or walking in the water.  Mom is drawn into her self so much more at this point. 

I was delighted though when we first walked out on the boardwalk and Mom turned to me and said, I live here you know.  She recognized the ocean as her place.  And in spite of a more limited experience, it still was a good day.