Living Life in Dementialand (aka When Dementia is Riding in the Backseat)

It’s Sunday night and I’m sitting in a hotel room watching pairs ice dancing. (Twizzle twizzle twizzle.)

I am traveling for work. I woke up this morning knowing I had a five hour drive ahead of me.

When I drive somewhere, I usually challenge myself to make it to my destination as quickly as possible. I pride myself in not taking a lot of bathroom breaks. I don’t get gas until running out of gas is a real possibility. When I get to where I’m going, I’m usually not in a pleasant mood.

For some reason, I decided to play it differently today. I told myself that I would stop–not only when I had to–but just because. I didn’t have to be at the hotel by a certain time, so I made a conscious effort to look for interesting places along the way.

I ended up at a small winery in a quaint Illinois town. (I just ended up there. It just happened. Like a moth to a flame.) And they convinced me to a wine tasting. (It took a lot of persuasion.) I left the winery with $65 worth of wine and a recommendation for a café down the street where I could get a salad.

Over the past couple of years, I’ve gotten much more comfortable eating out alone. Table for one. No, I’m not weird. Yes, I have friends. But today I am eating by myself. And I’m cool with it.

Yet there’s sometimes a moment when you walk into a restaurant and the host looks behind you–expecting someone to be following you. No, buddy, it’s just me.

And then he asks, “Are you meeting someone?”

Today my off-the-cuff response was, “Just you, my new friend.”

He didn’t seem humored.

He told me he could seat me in an empty section of the restaurant or at the bar. I chose to sit in the empty section of the restaurant where a large TV was showing Olympic ski jumping (not the kind where they try to jump far–the kind where they do lots of flips).

In a few minutes, two women walked in and were seated next to me. I guessed them to be sisters, and I would guess they were in their 70’s.

Let me insert a statement here: If you ever travel by yourself and hang out at restaurants, airports, or other locations solo, you may notice that you pay much closer attention to the strangers around you than you would if you were with another person.

When I’m alone, I often find myself making up hypothetical stories about the people I see, their backgrounds, and their relationships. I admit that–while part of the story I’m about to tell you is based on what I objectively observed–part of it is based on my own perceptions and ideas of what might have been happening.

Here’s what I noticed: One of the women did several things that made me wonder if she had dementia. For instance, she was served coffee with cream and sugar on the side. She took the sugar packets, opened them, and sprinkled them directly onto the table. She peeled open the cream, and she poured it into the saucer rather than the cup of coffee. Her sister didn’t correct her. They just continued chatting pleasantly. And laughing a lot.

She asked her sister the same question repeatedly–“When are the boys coming back?” Her sister responded in the same tone each time–“They’ll be home after dinner.” If you weren’t paying close attention, her lack of annoyance at repeating her response would make you doubt it was the exact same question each and every time.

(In case you are wondering, I was being subtle in my observation. I wasn’t being that much of a creeper. I hope.)

Before the waitress came to get their lunch order, the sister said she needed to use the restroom, but I noticed she didn’t actually go to the restroom. She walked up to the bar and had a quick chat with the waitress.

When the waitress came to take their order, the sister (who had just spoken to the waitress) ordered a specific salad off the list of salads on the menu. The second woman (who seemed a bit flustered) just said she’d like a “salad.” I expected the waitress to respond with questions about the type of salad she’d like, the dressing, etc. But she didn’t. It occurred to me that the first woman had already spoken to the waitress about their order.

The Winter Olympics continued on the large TV above us. Every time someone on skis flew up in the air, the woman would say “Oh, dear God” and laugh. They had a silly (and fun) conversation about whether or not their husbands would allow them to take up ski jumping and what injury was most likely to occur if they did try out for Olympic ski jumping. Broken neck, they both decided.

If I had been dining with a group, I would have never noticed that the woman was showing signs of dementia. On this particularly day, I couldn’t help but think they were two sisters out for lunch…with dementia in the backseat.

In full disclosure, I modified this analogy from something I heard on one of my favorite podcasts, The Hilarious World of Depression. At one point, they had a discussion about how people with depression always have depression…but sometimes it’s in the front seat when you’re driving and tries to take the wheel and steer you into the median. And sometimes it sits in the backseat. In the backseat, it’s quiet and unassuming, but if you look in the rearview mirror, you can see it hanging out back there.

I know a lot of people with dementia and their caregivers. I understand that there are days that dementia steals. They make a plan, and dementia doesn’t allow it to happen. Dementia causes them frustration, annoyance, and misery. Dementia is cruel, and sometimes, no matter what you do, it wins the day. You just can’t keep it out of the front seat.

But watching these two sisters having lunch on a cool but sunny Sunday in a quaint downtown, I was reminded of something that I often forget…that sometimes dementia takes a backseat. One of these sisters seemed to have dementia, but that wasn’t the focus today for them. They were just two sisters out for lunch. Sure, dementia was there, too. But it wasn’t about dementia.

I talk a lot about challenges of dementia. In my role, I tend to focus more on end stage dementia. I get asked for input on solving “problems.” And I spend my time and efforts to advocate for policy that benefits individuals living with dementia and their carers. To make my point, I talk about how dementia is brutal and life-changing.

And I forget that life after dementia is life.

There are so many people living (yes, living) with dementia, just like the woman I saw at the café. They get up everyday and do life things, like watching ski jumping and eating salad and window shopping on Main Street, just like the sisters did after they left the café.

And there are many friends and family members who support those living with dementia–and don’t make comments if they sprinkle sugar on the table instead of in their coffee…because who cares anyway? And they answer the same question repeatedly in the exact same tone of voice each time–without even an ounce of frustration. They might even tip off the waitress that their dining companion has dementia to make the process of ordering a bit simpler.

There may be a day in the future when this woman isn’t able to eat out with her sister. But today wasn’t that day.



3 thoughts on “Living Life in Dementialand (aka When Dementia is Riding in the Backseat)

  1. Another wonderful post—as I was cleaning out my inbox this morning I realized I’d never finished it!

    The greatest blessing of my life has been going out and living life and making moments with my mom. Because I don’t have kids and my husband has a wonderful job, I was able to put in my two weeks notice within a week of her official diagnosis in 2010. I became her primary caregiver and we began “adventuring.” We are now 7.5 years into the journey and Mom is on the brink of the final stage, so dementia now steals most of our days. But we still make small moments of joy every day, and I have the memories and a TON of pictures from the past 7 years that I can continually share with my dear mother. I’ve been diligent about sharing our days/lives on Instagram as well, partially because I want to keep those memories handy and easily accessible forever, but partially because I want people to see and understand that life doesn’t end with a dementia diagnosis. Although most of our family and virtually all
    of my mom’s friends have dismissed her as gone since she no longer remembers or has the ability to interact with them (which is a whole other rant that I could get on forever), she is still a valuable human with LIVING left to do, even if it now only comes in tiny moments. 😊

    Thanks for sharing this important truth in all you do, Elaine!


    1. Thank YOU for the way you view dementia and share moments of joy with your mother. And thanks for sharing that perspective with others. Dementia does change life–but you are absolutely right that it’s all about seeking out those moments of joy.


Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s