Christmas When It’s Not Christmas in Dementialand (Or My Shout-Out to Nana, the Winner for Christmas Spirit)

First of all, Welcome to Dementialand will be off for the next two weeks due to the holiday. I say this as if it’s been a corporate decision–rather than just a woman sitting on a couch deciding she’d like a little break for Christmas and the New Year. I’ll be back in 2018.

In the meantime, a bittersweet story that I hope you perceive to be a bit more sweet than bitter.

I was approached by a woman at a speaking engagement in January of 2017. She told me that her grandmother, who she called Nana, lived in a nursing home and had recently entered hospice care. Nana was bedbound due to Alzheimer’s and had stopped recognizing family members. The only word that came out of her mouth on most days was “No.” What bothered this woman the most was that Nana just seemed sad and distant.

The woman explained to me that Nana had always loved everything about Christmas. She made Christmas cut-out cookies that were famous in their small town. She rounded up neighbors and went caroling. For many years, she coordinated the Christmas pageant at their church. Perhaps most impressively, Nana had the absolute best collection of Christmas sweaters–many of them with glitter and sequins. If there were a prize for Christmas spirit, Nana would have won it. As her granddaughter said proudly, “My Nana was Christmas’s #1 fan.”

A few weeks earlier, the family had visited Nana on Christmas Day. Like usual, Nana was in her bed, seemingly staring at nothing, when one of her great-grandsons knelt beside her and said, “Nana, it’s Christmas.”

Nana’s eyes brightened. “It is?” she said incredulously, like a small child.

They gave her a gift. She couldn’t unwrap it, but she watched in awe as a family member unwrapped it for her. It was a pair of fuzzy socks. Someone held them in front of her, and she petted them as if she were petting a kitten.

“It’s so beautiful,” she said.

Her family decided to sing some Christmas carols. To their surprise, Nana joined in a few times. Not much sound came out of her mouth, but her lips moved. And for the first time in months, they saw a subtle smile.

I don’t want to say it was a Christmas miracle, but it was a pretty great visit with Nana.

A few days after Christmas, the family visited again. Nana showed no acknowledgement they were there. Try as they might, they couldn’t make a connection–until her great-grandson again knelt by her side and told her it was Christmas.

And again…there was a spark. They didn’t have a gift for her this time, but they did sing some Christmas carols. They were amazed that Nana remembered all the words to Silent Night. It wasn’t Christmas Day, of course, but it was still the holiday season. And it was great to see Nana experience a bit of joy one more time. Her family knew it would be her last Christmas.

As her granddaughter told me this story, I sensed that she was in awe–but also that something was bothering her.

She then told me her family just wouldn’t let it go. They had visited Nana a few times since Christmas (this was mid-January) and each time they had told her it was Christmas. Each time she lit up and joined in singing a Christmas carol or two. To the amazement of her family, she had even managed a couple of giggles upon hearing it was Christmas.

“But we can’t go on lying and telling her it’s Christmas all the time,” the woman said to me. “It’s dishonest.”

I wanted to explain the difference between reality orientation and validation therapy in dementia care. I wanted to say it was okay to step into Nana’s world, and maybe it could be Christmas in Nana’s world even when it wasn’t December 25.

However, another dementia caregiver was listening to our conversation, and she had a response that was more insightful, more brilliant, and just plain better than anything I would have said.

The woman said to Nana’s granddaughter, “If you think the birth of Jesus is good news, you should celebrate it everyday. Your grandma has limited days left on this earth. She especially should celebrate the birth of Jesus everyday.”

Nana’s granddaughter didn’t have much of response to this, and I wasn’t sure if she was comfortable with making Christmas a frequent occurrence for Nana.

This summer I ran into Nana’s granddaughter. I didn’t remember her…until she reminded me who she was by telling me she had the grandmother who loved Christmas. I asked how Nana was doing.

She told me that Nana had passed away a few weeks earlier. The day she passed away was…well…Christmas. They had sung Christmas carols on the day she died, and her granddaughters were all decked out in her tacky Christmas sweaters.

She told me it was one of many Christmas days Nana had in 2017.

This blog has no religious affiliation. Maybe you celebrate Christmas. Maybe you celebrate something else.

But perhaps when you believe in something…when it’s important to you…when it really means something…maybe it’s a shame to only celebrate it once a year.

I’d like to thank Nana for the reminder. And, wherever she is, I’d like to wish her a Merry Christmas.

Today and everyday.

12 thoughts on “Christmas When It’s Not Christmas in Dementialand (Or My Shout-Out to Nana, the Winner for Christmas Spirit)

  1. Thanks Elaine, I finally got around to getting a wordpress account so I could comment. Your blog is always helpful, always encourages me and helps me think things through. This last one has been a real star post, massively encouraging me to think about what is important. Have a happy holiday break. Best regards. Philip (London, UK)

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  2. Your blogs always bring tears to my eyes.  It’s a good thing! We’re just in the beginning of our journey through bvFTD, and I’m learning how to make these last years amazing. THANK YOU! 

    Sent from Samsung tablet

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  3. Such a beautiful story it’s making my eyes leak. 😉 Thank you so much for sharing your wisdom and humor and eloquence with us. Have a wonderful holiday break!

    Like

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