When You Don’t Look Like Dementia in Dementialand (Aka How to Come to Terms With Missing Your Flight at O’Hare)

Sometimes I think I’m not going to get my blog post together for Monday. And then life gives me a gift…

This gift came in the form of a missed flight out of Chicago which has left me sitting at an airport Chili’s with a glass of wine and my laptop.

Okay–if you think I am that positive of a person, you obviously don’t know me. I was mad I missed that flight, especially after sprinting from terminal L to terminal G at O’Hare. I am still mad that I missed that flight.

It didn’t help that the gate agent asked (after telling me I missed my flight by a couple minutes), “How is your day going, ma’am?”

Listen you overly chill Millennial with those hip glasses, it’s a bad day by definition when you miss a flight. You’d think you’d know that if you work at an airport. And did you see the shoes I was wearing for that 3/4 mile sprint? They weren’t flats.

But, fortunately, I am sitting here and have an idea of something to write. And this blog is going to get done. Here goes…

A few people I know who live with dementia have been accused of not having dementia.

One guy who I know was diagnosed six or seven years ago. He is still able to travel to conferences on dementia and give presentations about his experiences. He is active (and insightful) as an advocate on social media. Therefore, according to some, he must not have dementia after all. He must be faking in order to get attention and accolades for his advocacy.

Um….okay….

I have heard stories of people faking cancer to make money off a bogus GoFundMe account, but I must say I have never heard a confirmed story of a person faking dementia. Never.

Let me know if you can provide me proof that someone has faked dementia. I just don’t think it’s the type of thing people fake. I think people usually choose less stigmatized conditions and those that naturally lend themselves to fundraisers. (We don’t do generally do fundraisers for dementia like we do for cancer or ALS, but that’s a post for another day.)

I’m not sure someone has ever thought, “Hey, I want people to pay attention to me. Let me pretend I have dementia. Yeah, that’s the ticket!”

I also know quite a few people who have been told by family and friends that they must have been misdiagnosed.

But you can still have a good conversation. I think you should go back to your doctor. I don’t think you have that dementia.

If you’ve had this for 5 years, and you can still hold a part-time job, there’s no way you actually have it.

I don’t know why they’re saying you have dementia. You can read and write and take care of your own hygiene. Did you tell them you can do all that?

You remember your childhood phone number AND all the names of girls who lived on your dorm floor in 1975. Your memory is too good for this dementia thing. You need a new doctor. 

When someone is negotiating an illness, one of the more hurtful things you can do to is deny that they have that they have illness in the first place. Maybe you straight-up accuse them of faking a medical condition. Maybe you point out (based on your own “medical expertise”) that the condition doesn’t fit their symptoms.

When I think about this in relation to dementia, it comes down to one thing:

People don’t understand dementia.

If someone doesn’t “look” like they have dementia, we assume they don’t have dementia. But what does dementia “look” like?

To most people, dementia looks bumbling and stumbling…not being able to remember names…not being able to read or write or brush your own teeth…not being able to make meaningful contributions to society…not making any sense…being completely dependent…looking unkempt…wearing a diaper…existing in a nursing home waiting to die…

To most people, dementia looks old and tired. If you’re not old, it can’t be dementia. Maybe a brain tumor. Maybe schizophrenia. Maybe even depression. But not dementia. Dementia is for old people.

I’ve heard that more than 50 million people worldwide live with dementia, and the World Health Organization (www.who.int) estimates the number at 47 million. That’s a lot of people. And those people don’t “look” the same.

We are missing that this condition looks very different on different people. We are missing that it looks very different in the early versus end stages. We are missing that the only predictable thing about dementia is that it’s unpredictable.

We need to stop expecting people with dementia to look, act, and be a certain way.

And we need to expand that to everyone in any type of struggle–not just dementia. Oh wait. I think that means everyone. Because who doesn’t have some sort of struggle? And I would add that people can struggle and thrive at the same time. In fact, I’m proud to say I both struggle and thrive just about every single day.

We can’t judge someone’s struggle (nor their victories) at first glance. We need to realize that we don’t know the first thing about what someone is going through….and sometimes this holds even if we know them.

As I look down the wide hallway of this bustling airport terminal, I would guess I can see about 300 people. I’ve seen hundreds more pass by in the past hour. Statistically, I know some of these people have dementia.

Even though I’m well-versed in dementia, I have no idea which of these people are impacted. Sure, I could make some guesses…Of course, your risk increases by age, so if I had to bet money, I’d guess the older individuals are more likely to have dementia. But sooner or later I’m gonna lose some money because it’s far from unusual to have someone diagnosed with a dementia-causing condition in their 40s or 50s.

I see an older guy sitting by a terminal–looking a bit overwhelmed, really tired, and a tad confused. A part of me wants to think that looks like dementia, but I’m guessing I looked pretty much the same after I sprinted through three different terminals before finding out I missed my flight by two minutes.

Earlier I overheard an older woman asking for help because she couldn’t find her flight listed on the monitors. As it turned out, she was looking at arrivals rather than departures. I could say that sounds like dementia, but I’ve made the same anxiety-inducing mistake a dozen times.

A woman across the restaurant from me is using a wheelchair. I would estimate her to be in her 70s. She sits with her husband, but he seems to be ignoring her. Maybe he feels she’s not capable of good conversation…due to dementia? Or, then again, maybe he’s just a jerk? Or maybe they have been traveling together for weeks and are just done talking for now? I could say a wheelchair makes me think dementia, but I know better than that.

Dementia doesn’t look a certain way.

One day a while back I was struck at how different dementia can look.

In the morning, I had visited a memory care community where a woman I had known was dying from dementia. She seemingly hadn’t recognized family for several years, and she was been non-verbal for many months. At one point, her family had tried insisting that a doctor put in a feeding tube, but they had relented when they talked to a hospice nurse. Her granddaughter was a friend of a friend, so I stopped in.

“I didn’t know Alzheimer’s did this to people,” she said. “I just thought she’d get forgetful and tell the same stories. I didn’t know she’d die from it.”

And she did die from it….about four hours later.

In the afternoon, I got a phone call from a woman in a local state who was organizing a conference and wanted to know if I might be available to come give a presentation. My impression of her was that she was professional, eloquent, and organized. We chatted about the challenges of organizing a conference–contacting a caterer, getting people to register in advance, fear of audiovisual resources not cooperating, speakers getting sick or flaking out. It was only in the last minutes of our conversation that she shared matter-of-factly that she was living with dementia.

I met that woman in person a few months later. She was in her early 60s, sharply dressed in a hip suit, and personable. She recognized me immediately even though I wasn’t wearing a name tag. Throughout the day, it was obvious she was running the show. She made announcements. She helped me set up my Powerpoint. She even gave me a Bath and Body Works gift set as a thank you for coming.

You know what those two women had in common. Dementia.

You might think the first woman, at the end-of-life, looks like dementia, and the second woman, organizing a conference, doesn’t look like dementia. But they are both equally dementia.

It’s true that people living with dementia may become more limited across time. The woman organizing the conference may someday be more similar to the woman whose family is debating about a feeding tube.

But that’s not today.

As I sit here and people-watch (Is that a verb? Is it hyphenated?), I start to think more and more about issues that impact the chaotic mass of humanity at a place like an airport. So many people. Going through so many things.

I’m sure some of them have cancer. I’m certain some of them have debilitating depression and life-limiting anxiety. Or PTSD. Or OCD. I am positive that some of the people I see are grieving the loss of a spouse or a child.

There are some who are struggling with alcoholism or drug abuse–and some who are struggling with a family member’s alcoholism or drug abuse. And some have been sexually assaulted or physically abused. (If it sounds like I’m just listing the most terrible stuff that humans go through, that’s exactly what I’m doing. All of that and more is represented when you’re in a large crowd.)

I feel like a million people have passed my laptop and me at Chili’s in the past couple hours, and I wonder how many people are headed to and from funerals. And, of course, some of the people I’ve seen have Alzheimer’s, Lewy-Body, Frontotemporal, or another type of dementia.

If you lined up all these people in front of me and ask me to label people with their struggles, I’d do miserably. People often don’t “look” like their diseases and circumstances. Not everyone with cancer is bald. Not everyone coming from the funeral is wearing black with tear-stained cheeks. That bubbly young woman with the perfect makeup? She might have just found out her husband filed for divorce. Or maybe she recently had a miscarriage.

Perhaps missing my flight was a gift for me.

I have a confession to make. I had a bit of temper tantrum when I missed my flight. On my flight into Chicago, I was in the 2nd to last row of a plane with 23 rows. When we landed, I knew I’d be pushing it to make my flight. The flight attendant made an announcement asking passengers to stay seated so those of us with close connections could deplane first.

No one stayed seated. In fact, I was literally the last person off that plane. Even the people in the row behind me pushed their way ahead of me. And I did something I rarely do in such a situation…I said something. I made a few snarky comments under my breath about how I was pretty sure that not every person on that flight had a tight connection. I may have made a couple more when they were leisurely walking three-across up the ramp making it impossible to pass them without looking like a stomping brute.

As I sit in the terminal and watch people, I feel less angry toward all those passengers who didn’t let me off the plane first. Maybe they weren’t all conspiring to make me miss my flight. Perhaps they weren’t all awful people. Maybe they were just people–fighting their own battles that go often go unnoticed by the rest of us. Now I’m thinking that at least some them were so consumed with their own battles that they didn’t have the mental energy to think about the poor woman in the 2nd to last row who was really excited to see her husband and dogs.

And I need to cut them some slack.

I should add that I have a ticket for the next flight to Cedar Rapids. I’ll be home for dinner.

I’m not mad anymore.

 

 

6 thoughts on “When You Don’t Look Like Dementia in Dementialand (Aka How to Come to Terms With Missing Your Flight at O’Hare)

  1. My 69 year old husband is in Fisher stage 7C, but I remember earlier in our journey when friends and acquaintances would say to me that I must be mistaken. “But he looks normal” “He’s too young to have dementia” “I sometimes forget things too.” Such hurtful comments, as if I was making this up! For heavens sake, why would I want my husband to have dementia? His dementia is now so progressed, there is no doubt among friends and family. But those early days left me feeling hurt and unsupported.

    Sometimes I think folks are scared; does this mean they have/will get dementia too? I tried to look at it as a projection of their own fears.

    Powerful post. A good reminder that we never really know someone’s story just by looking at them. Thanks for writing Elaine.

    Carole https://www. oneoflifeslittlesurprises.blogspot.com

    Liked by 1 person

  2. And you gave me a smile… that I really needed. In talking about airports and missing flights, you brought back my own anxiety over the flight we just took to Texas. What a nightmare … but we survived it and we’re home now and back into our comfortable routine. Thank you… for being here and for sharing your life and your wit.

    Like

  3. Thank you Elaine. I’m now 48 and still battling this horrible disease and yes, still “look” the same. A couple people close to me and those who hardly know me, still question my diagnosis and I constantly hear “you don’t look like you’re sick/have dementia “. I’ve also come to the realization that I’ve started to pretend I’m all right just so I’m not judged or treated differently. I fight it everyday along with having absolutely no self confidence anymore. I guess I’ve become more critical of myself physically and mentally. My daughter recently did the Walk to End Alzheimer’s in Florida where she lives. I couldn’t make the trip down this year to participate with her. When she organized her team and as well as on the day of the walk, she was asked several times who she was walking for. She had my photo and explained I’m her mom. The looks and the words were no different than what I see and hear. It’s still heartbreaking knowing those who work in this particular field are still uneducated on the “age” number, that anyone can have this disease. I’m so proud of my daughter. She is also carrying the same gene as I am. This fight is personal and I pray everyday for a cure! Thank you for your continued work in helping others to learn and understand.

    Like

Leave a Reply

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

WordPress.com Logo

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

Google+ photo

You are commenting using your Google+ 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 )

Connecting to %s