Not quite the plan

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


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Nights like these.

Nights like these are not for going to sleep early.  Whether it’s the rain or the fact that it was a shower and fresh clothes day, or some other inexplicable tilting of the universe, Mom and I find ourselves hanging out in the kitchen cracking jokes tonight, so very late.  My plans to get some rest after a long day that began at 5am are set aside with only the mildest hesitation.

I have pulled out the ice cream, the good stuff that I keep hidden in the back corner of the freezer for just this kind of evening.  Mom’s delight is worth it.  Her ability to find humor in these moments amazes me.  She tells me she is cold, and I ask whether she is too cold for her ice cream.  The reaction is priceless.  She makes faces at me between mouthfuls.  She is cheerier than I have seen for weeks now.

Mom tells me my cat, also in the kitchen with us, wants dark chocolate and I pull out a bag of what is left of of the birthday chocolates Mom’s sister sent her.  We do not share any of them of course with the cat.

Suddenly, we are sitting in every kitchen as mother and daughter late at night, laughing.  Nothing feels that serious.  There is a camaraderie in the simplest of pleasures, sitting up together too late at night with treats.  This moment could be when I was a little girl eating goldfish crackers, delighted that I don’t have to go to bed yet.  Or letting Mom distract me from worries over what I should do with my life over my preferred late night meal of stacked up cheese sandwiches as a hungry teenager.  Or a night as an adult visiting home and spending that last night hanging out with Mom before heading back across the country to my busy life and months before I would see her again.  Or now where I am the one stashing the ice cream for Mom and doing the dishes as she enjoys her treat.

It is any of these times and all of them.  In the end, this is why I keep Mom at home, postponing again the inevitable.  These times are where wee find family, in kitchens over food, laughter and the ordinariness of the day.  Or the ordinariness of a night when we delightfully stay up too late, indulging ourselves as we can, lingering here for a little bit longer.  Always, hoping for just a little bit longer– before bed, before separation, before yet another change, another goodbye.

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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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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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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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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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Mascara on a good day.

Once upon a time, before caregiving took over my life, I used to make a modest effort with my appearance.  Lets be clear that I was never particularly enthusiastic about makeup but I was aware of personal presentation.  I gave some thought to clothes, jewelry, purses, hair. 

When caregiving came along, it was all too much.  A lot of days early on, I did not even look in a mirror.  I did not wear earrings for so long that it surprised me that the holes had not closed up when I finally found some to wear. 

In the last two years, I can probably count the number of times I have walked into a store that sells women’s clothing and nothing else.  Once, Mom and I passed an H&M on a walk and spontaneously decided to shop together.  Mom picked up a bunch of clothes for me in the wrong size but also picked out a necklace for me that I wear often now.  It was a lovely outing since shopping for my clothes once was a regular bonding activity for us.  On another occasion, I convinced Mom to stop at an outlet mall we were passing on a drive and similarly had a happy hour of shopping for both of us once I figured out how to manage the wrong size and style clothes that she consistently selected for me! 

But wirh these occasional exceptions, steps to take care of my own appearance are a lot lower on my list.  At some point, all my makeup expired.  Pedicures stopped happening. Where once I would have planned an outfit for a friend’s wedding weeks in advance, the last few times I have found myself wildly throwing a couple of dresses in a bag hoping that the shoes I had already packed would coordinate reasonably well.

Caregiving has taught me the limits to how many things I can juggle.  At some point, the list simply overflows. 

As I have improved my juggling skills, I have found that little bit of energy again for these kinds of steps.  Lately the daily goal is mascara and one item of jewelry before I walk out the door.  Sometimes I manage one, sometimes achieve both.  Today was a good day for mascara and I am pleased enough by that. 


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Buying all the books.

Mom and I walked to the bookstore the other night. 

Books have been central to my family always.  A vacation means tossing 4 or more books in a bag and weekly trips to the library were a childhood tradition. 

It is funny now because reading is harder for Mom but she still does a lot of it, even when she rereads the same page or chapter time and again.  There was one book I saw her reading for more than a month.  (Which makes less sense for someone with zero responsibilities and days with nothing but time.)

But Mom still reads.  So we walked to the bookstore and picked up a few new books. She was delighted even though I have a strong suspicion that one of our purchases is something she previously read.  Mom suggested a book for me titled How to Be an American Housewife, which she found humorous as a choice for me. 

As we were leaving she told me that she would like to buy all the books in the store and bring them home.  I loved her exuberance. It is wonderful to see Mom still find joy in things that are core to how she lived her life and how she and I have so often connected.