Not quite the plan

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


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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. 


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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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A moment of joy.

I work just a block from a set of senior apartments.  Because of this, I see elderly people heading in and out of the complex, catching the bus, walking their dogs, sitting in the front lobby as I zoom by.

The other day was one of those days.  I was walking from work and passed a rather elderly woman, using a walker.  She must have been in her eighties, and honestly she looked tired and a bit crouched over as she carefully made her way up the street.

I passed her hurredly on my way to an appointment.  Yet, the sight of her filled me with joy.

I felt joyful for this woman, that she was still living well into older age.  Joyful for her family and friends who have not yet suffered the loss of her from their lives.  Joyful for the fact that she was still walking, feeling the sunshine outdoors, and doing so independently. 

I don’t know if this woman feels joy at all that she has.  While I felt a temptation to run up and say all of this to her, I of course kept these thoughts to myself.  All she saw was a smile from me.  But I hope knows all of this.  I hope she feels her own joy. 


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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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Baby doll.

So, I was struggling a bit for Christmas presents this last Christmas and looked around for gift ideas for people living in later stage dementia. Among the various ideas, I saw mention of giving people dolls. Several people explained that it made the person with dementia happy to have a baby doll to care for. I decided to try it.

With a bit of searching on Amazon, I found a little toddler looking girl with long reddish hair that looks a lot like Mom’s hair, and decided she would be our trial baby doll.

I decided that wrapping up the baby doll with her other Christmas presents might be odd since the hope was that Mom might think of the doll as a real baby, and we know that babies don’t come wrapped up in Christmas paper. In my Christmas wrapping frenzy, I put the still boxed up doll on top of a pile in the hall closet.

The next morning, the day after Christmas, I woke up to find that the doll had been found and moved right next to Mom on the bed! So the baby girl doll clearly hit a chord. She has been living on Mom’s bed when she is not being carried around the house.

I had mixed feelings about whether it was the right time for such an item for Mom. I don’t want to insult her stage in life, and yet, more sophisticated things don’t bring her as much pleasure now.

Mom’s own reactions to the doll vary from day to day. One day Mom kept running over to give her baby doll kisses and telling me how cute she was. She often carries her around the house. Tonight though she turned to me and said, you know she’s not real? But I cannot help but think that with the chaos in my house these days, who is say what is real and what is not? I tucked Mom and her doll in for the night.


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Dressing for breakfast.

The other weekend, I heard Mom up early and stumbled out of bed to go make her breakfast. Downstairs I went in what I had been sleeping in– some awesome yoga pants covered with animal prints that a good friend of mine gave me several years ago, bare feet and a tank top.

So I started making us pancakes and Mom looked at me and pointed out that I was probably cold. She gets cold easily and to be fair, the winter has been serious lately. But I don’t get cold easily especially since we turn up the heat a lot for Mom. I was cheerfully making my pancakes.

Five minutes later, Mom tried again. She pointed out that I might want to cover up. Her next line was not terribly articulate but seemed to be a comment about women that I took as meaning that I was not appropriately dressed in my tank top. Perish the thought that I should not have done my hair and put on a coordinated outfit before making pancakes for the family!

A moment later she brought up the cold again. This point was not to be dropped.

Silly as it felt to have Mom telling me repeatedly to go get some clothes on, I could not help but appreciate that she still worries about me. It’s her way of continuing to mother me, at least in certain moments. What kind of mother lets her daughter wander about in tank tops and bare feet in the middle of winter?


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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.


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The pleasure of paper products.

If Costco understood my household, they would love Mom.  The woman’s ability to use up paper products is astounding.  I remember once when I was living on my own and Mom came to visit for Thanksgiving, she went to do “a little shopping” for me.  She showed back up at my house with the largest pack of paper towels a person could ever need!  At least, that was my naive twenty something opinion.   At the time, I stashed the rolls away in a cabinet where they barely fit and didn’t need to buy more paper towels for a year.

Since Mom has moved in with me, I have come to better understand the jumbo paper towel package.  Our household of three goes through that in no time at all.  It would seem that to Mom, everything is made better by the addition of some kind of paper product.

As her dementia has worsened, this tendency seems all the stronger.  She covers things with paper towels and tissues and wraps up various household items.  It’s sometimes a fun game to see what Mom has wrapped up as a surprise.  I restock several rolls of toilet paper in the bathroom only to find not a one just a day later.  Every pocket must be checked when doing Mom’s laundry as there are tissues in every possible crevice.

My attempts to encourage the use of washable towels are rather pathetic in the face of this level of paper product enthusiasm.

So, every time I go shopping now, I find myself dragging home the largest packs of paper products I can find, only to repeat a month later.  I just wish I could say that this abundance of paper towels was keeping our house a bit more spotless!