Not So Happy Holidays

It’s the Most Wonderful Time of the Year!

Unless someone in your family is living with dementia, in which case, can I pour you a drink?

Or perhaps chocolate is your drug of choice. Then let’s belly up to the chocolate bar and drown our sorrows in cocoa and whipped cream. Either way, we need to admit that this is hard.

I’ve been absent from this blog for a while, partly from an abundance of wonderful creative work, and partly from uncertainty about what to share. Mom’s dementia is advancing, and I don’t know which stories to tell, especially at Christmas.

I can write about the things that are working, which is basically a form of cheerleading combined with self-congratulation: “Look! There are things you can do with your loved ones to keep them happy! It’s not so bad after all! You don’t have to despair! See, I’m not despairing!! Aren’t I wonderful?!”

Or I can acknowledge the grief, the dull persistent ache, of realizing that she’s getting more confused, that the disease is gradually taking her in the same direction it took my grandmother — to a place of paranoia and isolation. That route saddens me so much that I quietly avoid it. I work around it. I find ways to redirect her attention to things that make us both happy: songs, games, friends, church, simple sewing projects, nature. And I ask myself, am I really handling her dementia well, or just pretending it isn’t there?

As always, I suppose the truth is somewhere in the middle. It’s true that this is the hardest time of year for her, and by extension, for me. She genuinely believes that her gifts have been stolen. She needs to be reassured, over and over, that they’re all at my house, safely wrapped and ready for Christmas day. (Leaving them at her place just confuses her.) Next week she’ll say that all the gifts she received have been stolen, and take bitter, self-righteous comfort in the belief that at least, like a good little girl, she wrote her thank-you notes.

That’s how it goes, every year now. I hate it.

Yet somehow this year, I’m doing okay. I’ve learned not to draw too much attention to Christmas. We don’t decorate her apartment anymore, because the ornaments trigger her paranoia. We do a little shopping with her and take care of the rest on our own. We visit thrift stores all year round; her favorite thing to do is to buy me “something pretty,” and she never remembers what we’ve bought. This means I can pull out a sweater she bought me weeks ago, and put it under the tree as her gift to me. She won’t know the difference. That’s sad, but somehow freeing. One more step on the path to letting go.

And it’s true that, in this season of high expectations, this season of “Joy to the World,” I sometimes lose sight of the beauty in my little corner. But it’s there.

Last Sunday we took Mom out to lunch after church. She tasted her vegetables and immediately reached for the salt shaker. She took a few bites, reached for the shaker, and salted again. And again. And again. It’s a dementia thing; her sense of taste is changing. The fourth or fifth time, I gently but firmly urged Mom not to salt her food. I told her I was sorry to be bossy, but she’d already done it twice (no need to mention the other three times), and we needed to watch her sodium.

I noticed a woman at the next table looking at me with a concerned expression. I wondered if she thought I was being cruel; why shouldn’t my mother salt her food as much as she wanted? I wondered if I was being judged.

As we were leaving the restaurant, the woman caught my eye and whispered, “Bless you.” I stopped to make sure I’d heard her right.

“Excuse me?”

“Bless you,” she said. “I’ve been there.”

And there it was. The beauty. The sense of connection. The surprising knowledge that even when I feel most alone, a stranger understands.

I’d like to wish you a Merry Christmas or a Happy Holiday, a joyous celebration of whatever brings your family around the table this time of year. But I am letting go of the need, and the obligation, to be merry and happy all the time. Instead, I’ll just offer the secular salutation of my 1960’s childhood:

Greetings of the Season. Season’s Greetings.

In this season of beauty and loss, joy and heartache, I greet you, as the woman in the restaurant greeted me. “Bless you. I’ve been there.”

You are not alone.

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Thrill Ride

Update: Mom is still with us. In case there was any doubt.

In the roller-coaster ride of dementia care, there are times when you think you’ve lost your loved one. Every time she can’t do something she used to be able to do automatically, you think, “Oh, she’s left us.” But she rallies, or you open your mind, or both, and you realize that although she’s different now, she’s still with you.

Flashback: When I was about ten, Mom took my friend Vikki and me to Six Flags Over Georgia, a huge amusement park. It was a two-hour drive from our hometown, so every visit was a special occasion.

In those days, there was only one roller coaster in the park, the Dahlonega Mine Train, and it was my favorite ride. My friends and I were accustomed to waiting in long, snaking lines to reach the platform, where we’d be strapped into mine cars by a gaggle of teenage summer workers, their adolescent swagger and easy camaraderie adding to the excitement of venturing underground without our parents.

This summer day, miraculously, the park was not crowded, and there was no line. Vikki and I rode that roller coaster once, twice, three times . . . and each time we emerged, we dashed back to the entrance, where my mother sat waiting for us on a shaded bench.

“Can we ride it again?” we begged, breathlessly.

“If you want to,” Mom said.

Vikki and I raced through the zigzag rows of handrails to the platform, and rode the mine train 36 times – a new record, at least for us. (We couldn’t wait to get to school that fall and tell our friends.)

Looking back, I wonder at the patience my mother had, sitting on a bench in the Georgia heat, letting two little girls run and ride in circles. By that time, Mom was probably already seeing glimpses of her own mother’s dementia, the roller coaster she would soon be riding.

It occurs to me now that we may have been in Atlanta that day so that Mom could take care of her aging parents. Vikki and I rode to Atlanta several times and played, while Mom tended to her dying father and demanding mother. Maybe that trip to Six Flags happened on a weekday when Nanny needed help with shopping or the checkbook. Maybe it was the day Nanny said her purse had been stolen and Mom found it under the kitchen sink. Whatever. It was a happy day for two little girls at an amusement park.

The thing about roller coasters is this: you have to roll with them. The ups and downs and crazy turns are built in. You can fight them, or your can put your hands up in the air, let the wind whip through your hair, and accept the fact that you are not in control. You can be terrified, or you can have fun.

Or both.

I still get frightened by Mom’s dementia. I think fear and frustration are built into the ride. I will never get used to seeing her abilities slip away. I will never stop feeling a clutch in my stomach when she’s distressed; in fact, I think I’m wired to react to pain in her voice, the way new mothers physically react to their baby’s cry. And because she’s my mother, there will always be things about her that drive me a little bit crazy. But I also have fun with her. In the midst of a long uphill struggle, she can still make me laugh.

The other day, when she was feeling particularly low, I put my arms around her and hugged her tight.

“I love you, Mommy,” I said.

She hugged me back and said, “Oh darling, I love you, too. If I didn’t love you so much I’d move in with you.”

Whoosh! The sheer joy of her joke – unexpected, truthful, wise – rushed up and propelled us forward. We broke into gales of laughter, like two little girls barreling downhill on their favorite roller coaster.

Oh yes, Mom is still with us. She’s right beside me, on the ride of a lifetime.

The Dahlonega Mine Train at Six Flags over Georgia. Photo c. 2005, coasterimage.com

The Dahlonega Mine Train at Six Flags over Georgia. Photo c. 2005, coasterimage.com