Not quite the plan

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


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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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Love is purple.

Mom’s memory is almost non existent these days.

So we stopped to admire the flowers on walking into the grocery store the other night. I suggested that Mom pick out a bunch. She absolutely loves flowers. I try to pick them up on occasion but it has been a little while.

Mom was delighted by the prospect of a bunch of flowers and began to look around. There were mums in various fall colors, and I pointed out a deep red since she loves red. She admired thr red roses for a monent. But Mom focused in on a purple bunch.

Purple is my sister’s favorite color and it’s one fact that Mom always remembers. When she sees purple, she always talks about my sister. The connection is deep.

So at Mom’s first chance in many months to pick out some flowers, she bought purple. Love, for Mom, comes in purple.


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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.


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Broccoli joy.

When I was growing up, Chinese food was our big culinary adventure.  And Chinese was Mom’s particular favorite. She always had a favorite Chinese restaurant and it would be her first choice when travelling and looking for something new.

Lately though, Mom has become the pickiest eater this side of 3 years old.

Over the past couple of years, she seems to have given up on eating anything that she does not consider delicious.  It’s an increasingly short list. Her diet this past year basically has consisted of cheese pizza, eggs, pancakes, simple pastas, orange juice and ice cream. Really, that is it! It’s incredibly boring diet and causes me ongoing worry about lack of nutrition.

Last night we ventured out to a local Chinese restaurant a few blocks from our house. Let’s be clear that none of our list of agreed upon foods can be found at a Chinese restaurant but I decided to give it a try.

We ordered a couple of dishes to share in the hope that Mom would eat something. First, she slurped down the egg drop soup and pronounced it excellent. Then she moved on to lo mein and then… drum roll… a serious pile of broccoli. I sat there, consumed with joy. It’s ridiculous I know, but seeing Mom eat her first vegetables in months was rather fabulous.

Then we came home and I found the leftover bag of Halloween candy, emptied.  Well, I guess if she is going to eat that much chocolate, at least there are vegetables to go along with it!


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Chasing Halloween.

I was delighted to realize in the middle of last week that my new house on a cute residential block of the city might actually get some trick or treating action.  Having mostly lived in city apartments, children in costumes rarely show up at my door.

Mom of course was delighted by Halloween. Chocolate and children are two of her favorite things! She started the day right by carving a rather attractive jack o lantern.

But the highlight was when the kids began to arrive. I have rarely seen Mom so happy. Every child that showed up got a rather significant handful of candy, and Mom usually concluded that it was still insufficient so went chasing after them to give them even more.

A few years ago, I could never have expected that I would one day be spending my Halloween chasing my mother down our street. And I definitely could not have predicted that doing so would be so much fun.


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Getting to know you.

One of the reasons that I wrote about Nothusband the other day is because I have been struck Mom’s relationship with him.  In spite of having only met Nothusband while navigating rather serious memory loss, Mom has a genuine friendship with him. 

In the same way that Mom tends to remember her emotions and whether it’s a good or bad day, she knows she likes Nothusband. 

This past weekend, the three of us took an excursion to a local park to enjoy a beautiful fall day.  Mom took me aside at one point to tell me what a good husband Nothusband is.  Later she found another opportunity to make the same point.

She has clearly decided that she likes him, trusts him, looks forward to spending time with him, and approves of him as a partner for me.  How does one make these assessments — or more importantly– trust them without a reliable memory?  Perhaps Nothusband was just being nice on our Sunday outing while typically acting like a selfish pig toward me?  How would Mom know? 

And yet she knows something about the people around her.  She trusts herself on this.  Mom has opinions on her caregivers and various other people who come through her life these days.  Perhaps it is the memory of what emotions they evoke in her.  Perhaps it is more of a gut feeling.  Whatever it is, it is not her memory. 


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My husband?

For my friends who read this blog, let me start by clarifying that I have not recently acquired a husband.

Yet, in Mom’s mind, some days I have.  There is a guy friend of mine who has been coming around to dinner on occasion for quite some time so Mom has gotten to know him rather well over the past years living with me.  He and I  have recently started dating under Mom’s observation.  Just barely into our dating phase, Mom was talking to me one day and mentioned something about my husband.

Husband?!

After a moment of conversation it became clear who she was referring to and that there was no way of correcting this particular confusion.   Mom has been despairing of  finding me a good guy and is satisfied with this one.  Some days Mom seems to think we have babies as well; yesterday she asked me the name of my baby boy.  I guess wishful thinking gets especially interesting when one has dementia!

So when NotHusband came over to dinner a few weeks ago, still before even some kind of relationship defining conversation, I had to explain to him as we walked up to the house that Mom had defined our relationship for us.  I warned him of his new role or roles in my life and that Mom might be using some loaded terms to describe us.  It might be at the top of the list of most awkward conversations ever.  NotHusband asked if he had missed the invitation to his wedding.  As I said, most awkward conversation ever.

Both of my parents had a tendency toward the match-making, but this takes it to a whole new level.  Mom always used to joke that she would do a better job picking out my husband and I guess at this stage she is simply done with giving me the chance to do it myself.

 

 


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Remembering it tomorrow.

Mom doesn’t remember things tomorrow anymore.   Tonight I laid next to her in bed for a while, watching Dances with Wolves, one of her favorite movies. We struggled a bit with the subtitles but she was enjoying herself.   She thanked me for hanging out.

And then she looked over and said, I won’t remember this tomorrow.  Mom is right of course.  She won’t.

I think about that when I make time to do happy or fun things with Mom.  Does it matter when she will not remember?  Who am I doing it for?   Does it matter that I make time to have quality time with her with a certain frequency, or does it not matter as much when you forget the next day?

Regardless of whether she remembers the next day, I make time.  Connecting with Mom and making her laugh is a regular priority for me.  I cannot make the time as often as I might like to lie around making silly jokes about a movie together, but I also know that these memories matter to me.  And in the moment, I know it matters to Mom.

 


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Some of my questions today.

Why is there a bottle of shampoo on my kitchen counter?

And should I worry that it has been miscategorized as food?  

How did so many of my shirts find their way to Mom’s closet?  

And when did she develop a preference for hippy looking shirts with flowers on them?

Also, where is the glass top from the coffee table?