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.


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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!

 

 


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What makes it home?

A few weekends ago, I took the family to a cabin in the woods overlooking a lake.  I was hoping for a simple relaxing time together where I could read my book, build a fire, cook us a few nice meals.  I found a simple state park and booked us there without giving it a lot of thought.

Upon showing up, Mom expressed that we were “in Minnesota,” her home state and spent the weekend delighted by the lake, the deer, the few remaining fall leaves on the mostly bare trees around us.  Whatever it was that triggered the feeling of being in Minnesota, I cannot be certain.  But Mom was happy.  She spent much of the weekend in a rocking chair in front of my efforts to build a fire — pathetic the first night and better the second night!

I suspect that the feel of a small space shared with family in the beginnings of winter evoked deep memories of her childhood in that cold state.  Of course perhaps that is her crazy daughter over analyzing the world. It may have been simply seeing the lake outside.

Mom often requests to go home. I don’t know exactly what she is hoping for in that home, but apparently we found it for a weekend. Minnesota is not such a long drive after all.


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Sunglasses for Christmas.

Mom has always loved Christmas.   Christmas and Mom are such intertwined concepts for me and probably many people who know her. Mom always made Christmas special, and not just for our family.  Her version of gift giving, baking and decorating would have given Martha Stewart a run for her money, and I would bet that woman has a whole crew.  Mom’s Christmas parties were always the best.

So this was the first year where I was truly in charge of our Christmas.  Two years ago Mom was still driving to go pick out Christmas presents for me.  Last year, Mom was still the one who decorated our tree and would not let me touch it. 

And then came this year.  For the first time in my life, Christmas has really been my show.  I decorated the house, planned the menu,  bought and wrapped the gifts, sent the Christmas cards.  I was proud of holding up many of our traditions from pulling crackers to drafting a Christmas letter for the cards.

But Mom showed that she is still the one who loves Christmas most.  She came downstairs today ready for a Christmas party by accessorizing her pajamas with her sunglasses!  For much of the afternoon, after pulling it off a package, she left a bunch of curly ribbon attached to her ear as decoration.  And as we opened gifts, Mom switched to a southern drawl.  I watched my mother sport her sunglasses, toss her head to shake her ribbon decoration and perform her idea of a southern belle.  She may be having a tougher time all around these days, but Mom was still the one who brought the party on Christmas. 

Merry Christmas from a house full of chaos, but also a lot of love and laughter! 


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Trust.

Mom and I have had various moments over the past couple of years. There was the time that she was upset with me, had a hallucination that I threw an animal in her face and spent a few days furious and hurt in a way that was impossible to address with logic.  There was the time that she was so suspicious of something that I had done that she refused to take her meds from me one night, which is not in Mom’s typical behavior and started a panic that it would become a pattern.

Though these incidents have been rare, it has often struck me that these kinds of incidents could worsen as her confusion increases. And they make me incredibly sad, especially that she does not always feel the level of care I have shown for her.

Lately we have not had moments like these.  Rather she has frequently expressed appreciation to me for things that I do, which is of course always lovely to hear.  But last night was a particularly interesting moment of this.  I had a really interrupted night of sleep – trouble falling asleep, waking up at 3am for no apparent reason. Some time after that, I woke to sounds of Mom walking down the hallway with its creaky old wooden floor. It does have the advantage of alerting me when Mom is up! Too tired too investigate, I hoped she would not get into any trouble. But the creaking continued to my room and I opened my eyes to a very upset Mom. She was terrified by some dream or hallucination.

We returned to her room and put her back to bed. After a few words of reassurance, she said to me, I trust you completely.Beautiful words from someone losing her grasp on reality in the frightening way that Mom is.