Not quite the plan

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


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Not necessary

In the midst of a recent conversation that did not make sense, Mom reached over to my bowl at the dinner table, pointed at it and said, this says, I am not necessary.

Once, Mom was quite necessary.  She was a mother of two, a small business owner, a friend, a wife, a sister, the member of her family who knew what was happening with every cousin and great aunt.  She organized events at our church and once upon a very long time ago, at my schools.  She threw great parties.  She maintained a beautiful home.

The productive version of Mom though has faded away.  When we first started living together, she would iron and do dishes for our house.  She felt that she contributed.  Gradually this has become harder until now when she simply feels unnecessary.

I know that when I go running out the door after a two minute morning talk, that Mom probably does not feel how much value I put on our exchanges.  But, I still need Mom.  Sure, she is no longer actually doing anything for me.  But being can be more important than doing– though it is perhaps less valued in our frenetically busy culture.

But I look forward to seeing Mom and knowing that she is safe and well.  We still laugh together.  She is still my mother and my friend.  I still need whatever part of her that remains with us, as long as possible.


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Roses.

I stopped by the grocery store on my way home tonight to pick up a couple of things.  And, was greeted by beautiful bunches of red roses.  I could not help but wonder when Mom had last received some red roses — her favorite flowers.  Dad used to buy them for her at least on Valentine’s Day if not other times in the year.  Since he died, there have been a lot less flowers in her life.

So I spontaneously bought a bunch and brought them home.  I struggle often with finding things that actually reach her in her current state.

Mom was in awe of her flowers.  She carried them around and held them while she sat on the couch for a while.  We brought them to the table for dinner and then moved them back to the living room.  It’s one of the better things I have given Mom in the past year.  A beautiful little reminder of being loved.


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Hungry but holding back.

Sis gave Mom an early salad dinner tonight so when I sat down to eat a few hours later, Mom joined me at the table.   When asked if she was hungry,  she pronounced herself starving.

I poured her some orange juice and grabbed a handful of nuts.  Mom has put on a lot of weight recently so we are trying to be thoughtful about healthier choices.  Mom finished everything and I asked whether she wanted more.

Her response, “No, I am healthy.”  Which in Mom talk means that she is trying to be careful of how much she eats. 

In spite of increasingly advanced dementia, Mom still shows awareness that she should be careful of what she eats and weighs.  Given how many issues no longer concern her, the occasional attention to her weight stands out.  It turns out to be one of those deeper lifetime habits. 

It is not quite enough to stop the ice cream snacks but in her seventies with dementia Mom still thinks she should be trying to stay slim. 


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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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I like what I like.

I got Mom some ice cream tonight and we sat together while she ate it.  As she was enjoying her fudge bar, my cat jumped up on the couch and began wandering over to Mom. 

While Mom is increasingly fond of my cat, she prefers not to touch her.  She likes the cat on the floor, with a nice distance between her and that fur and claws.

So Mom immediately jumped away from the cat and asked me to get her down.  I laughed and asked her why she lets my cat bother her.  Her answer,  “I like what I like.”  Mom likes the fudge bar, not the cat.  Simple.  Clear.

All of us could use that kind of clarity sometimes.  I like these things.  Not those.  I don’t like my job.  Some days I would rather read chick lit than anything more literary.  But for many of us, our likes and dislikes get swept up in our responsibilities, the compromises we make with and for with the people around us, and concepts of what we should prefer.

Some of this is good of course.  Eating Mom’s pizza and ice cream diet would be a terrible life choice for me right now.  Neither is quitting my job the right choice for the foreseeable future. 

Though most of what Mom navigates now is challenging and painful,  I envy her the clarity that at this stage, she can simply like what she likes. 


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More than memory.

Mom brought up her husband, my dad today.  She rarely talks about him these days.  I asked her how often she thinks about him. Her answer — all the time.

Dad died about two and a half years ago now. For most of the first year after his death, we had to talk repeatedly about the fact that he had died. It was horribly painful conversation for both of us as I had to walk her through the whole experience to trigger the memories. And for her, it was learning anew in each conversation that he had died and having to face that pain. It was quite simply awful.

I did eventually learn which pieces of the story helped her piece together the memories. And at some point she came to know and accept that her husband of forty plus years was gone.

After that, we talked about him rarely. Sometimes we look at family photos and talk about him. But it is rarely because Mom initiates it. So it was a surprise when she brought him up herself.

These days, Mom’s grasp on reality is tenuous at best. She barely remembers things that happened moments ago, and much of the past is a blur also. Yet, she still remembers her husband and misses him — all the time. It is fascinating to realize how deeply we hold certain feelings and connections.


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Glee in the house.

Mom and I used to spend so much time watching tv together.  It was a big part of our bonding, and how she passed so much of her time. 

Lately, few shows hold her attention since she cannot remember enough of the story lines to undetstand and follow.  We have tried a lot of nature shows but she tends to lose interest quickly.  Rewatching old favorites is also good sometimes.

But I experiment with various options to tey to hold her interest.  I recently tried showing her Glee, a show that she completely rejected when her mind was a bit more functional.  It is a fun show featuring high schoolers singing and dancing.

So I put Glee on and to my delight, Mom reacted to the songs and dancing.  She even got up and started dancing along.  Mom was always too inhibited for dancing so I love seeing her dance at this stage in life.  It’s a glimmer of joy. 

Tonight she did several loops of the living room, holding a roll of toilet paper, swinging her arms and bopping to Forever Young, as sung on Glee.  And she was happy. 

More Glee will be coming to our house. 


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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.