When Dementia Knocks: Update

Hi friends! Just a bit of a blog update. You can now find me online at WhenDementiaKnocks.com. Tell your friends.

In addition, I started a Facebook page with the title When Dementia Knocks. This is a place to post my blog as well as provide some other dementia resources. If you’re a Facebook person and you feel compelled to “like” the page, you can find it here: https://business.facebook.com/DementiaKnocks/

If you aren’t a Facebook person because you think it’s catty and are sick of seeing your relatives argue about Trump, I get that. Good for you.

It appears in the “business” section of Facebook but don’t worry–I’m not selling you anything (except some bad humor). As you may have realized, I’m seriously opposed to pushing products and services or even recommending them.

AND (man, I’ve been busy) I know have a Twitter handle (@dementiaknocks) for the blog. You can find that here: https://twitter.com/DementiaKnocks

I am hoping that being more involved in social media will reach some individuals I am currently not reaching. I guess this is how the youngsters do it nowadays.

In other blog news, I have a new favorite coffee shop to write. It has a latte called the Optimist–which is blackberry mocha flavored. I feel like I’m getting more optimistic just by drinking it.

 

Hey Dementia Community: Stop Telling Me Your Challenges Aren’t a Big Deal!

If it wasn’t a big deal, why was she telling me about it?

She said that having to cancel lunch with a friend because her husband (who was living with Alzheimer’s) was having awful anxiety was no big deal.

She said that her friend could stop by later. That she wasn’t that thrilled with the restaurant (Olive Garden) her friend picked anyway. That she had gone out for lunch with another friend a few days ago. She even made a joke about her weight and said maybe not going out for lunch is best.

Again, she said it was no big deal.

But here I am at this conference chatting with a family care partner who sought me out. We probably have about four minutes until I have to get to the next session.

In this limited time, she’s not talking to me about financial care planning or her husband’s diagnosis or her worry that one day he will walk out the front door and be lost forever.

She hasn’t told me about her feeling of disconnectedness within her marriage or how her kids are in denial that their father has a progressive disease.

She’s telling me she had to cancel lunch with her friend.

It’s a big deal.

I said, “I’m so sorry you couldn’t go to lunch with your friend.”

I said it with the sincerity I would say, “I’m sorry your husband died, ” or “I am so sorry to hear about this diagnosis.”

I really was sorry, and I felt for her. She had to give up something that was important to her. We’ve all been there–whether due to dementia or other life circumstances. It’s hard when you aren’t able to do what you want to do. We’re allowed to be upset about that.

She nodded and said, “Thanks but it’s no big deal. I mean, there was worse things.”

Of course there are worse things. There are always worse things. I’d have nothing to talk about in life if we were only allowed to complain about the things that are truly the worst.

Just because something is not the absolute worst thing to ever happen in the history of world does not mean it’s not difficult. And it doesn’t mean it’s not a big deal. As I sit here right now, I am declaring a new life rule–YOU GET TO DECIDE WHAT IS A BIG DEAL IN YOUR OWN LIFE. And you don’t have to apologize for what is a big deal in your life at any particular moment.

People living with dementia and care partners often tell me about some of the challenges in their lives and say then follow up by implying those challenges are small and insignificant.

Sometimes I get confused when I’m getting ready in the morning and trying to figure out what’s the toothpaste and what’s the deodorant and the hairspray. But that’s just a small thing.

I can’t do my crafts downstairs anymore because he comes down and needs my attention a lot. I know people have it worse. At least he’s home. I can deal with not crafting.

I want to make the same stuff I always make for dinner but now stuff tastes different to him and he won’t eat what I make. I am stuck making pasta every night because he says other stuff is gross. But I don’t want to complain. Pasta is okay.

I used to be able to sew but now it’s just frustrating because of Alzheimer’s so I gave up. It’s not the end of the world.

I’m guilty of saying something isn’t a big deal when it is, in fact, a big deal to me. I’ve been known to go on a monologue complaining about a problem or talking about a difficult situation. Then I tell everyone it’s not a big deal and dismiss it.

Elaine, why would you go on diatribe if it’s really no big deal to you?

And I say the same thing to those of you who reach out to tell me about challenges but then downplay those challenges because they are no big deal.

It’s okay for something to be a big deal. And it’s okay to say it’s a big deal. You realize that it is not a big deal to everyone in the world and that maybe it won’t be a big deal forever, but it’s a big deal right now. Sure, maybe you’ll get over it. Maybe you won’t even remember it in a year. That doesn’t mean it’s not a big deal right here in this moment.

It doesn’t make you self-centered or whiny. It just makes you a human being.

So care partners…I know the world expects you to be upset when your loved one is diagnosed, forgets your name, or passes away. Those are big deals, but please know that there are other moments that might seem inconsequential to others that are big deals to you. Stop telling me the things that are bothering you aren’t big deals because those things matter, too. Stop minimizing the loss you feel when you can’t go to Olive Garden with your friend. It’s loss. Loss is a big deal.

To the care partner who had meltdown in front of me because her husband could no longer handle the recycling and had thrown out a lot of plastic silverware. Maybe it’s not entirely about the recycling. Or maybe you’re really environmentally-conscious and it is. Either way, you’re struggling with it and it’s important.

And for my friends living with dementia…I’m looking at you as well. You deal with many challenges. Some of you are thriving. Some of you are struggling. I’d say quite a few of you are thriving and struggling even at the same time. Sometimes when I talk to you I hear you dismissing frustrating pieces of dementia as if they don’t matter. Your friends leave, but you tell me it’s fine because now you know who really cares. Your wife won’t let you mow the yard, but you say it’s okay because it’s too hot out there anyway. You can’t volunteer at the humane society anymore because you don’t have the energy. That’s loss. Loss is a big deal.

If you are struggling with something, that thing matters. Maybe it won’t matter so much tomorrow. Maybe it won’t matter in ten minutes. But right now…it’s a big deal. Stop telling me it’s not.

I don’t believe you anyway.

 

 

 

 

 

 

When Dementia Knocks

We have a winner, folks.

Bill Bass, Cedar Falls, Iowa (should I be inserting his age here as well?), suggested When Dementia Knocks and this title was the runaway winner by vote.

To clarify, I used popular vote and not the electoral college. And it was all online—so no hanging chads. I can’t make any conclusions about Russian collusion at this point.

I can’t speak for all of you who voted but I’ll tell you why I think the new title is a fit.

Dementia knocks…

Dementia knocks quietly on the door. Maybe you ignore it for the moment.

Dementia knocks and you open the door. You adjust to its company.

Dementia knocks and then forces its way when you don’t answer.

Dementia knocks you on your butt. You get up. But sometimes it takes a while.

Sometimes the knock is gentle and even kind.

Sometimes the knock is brutal.

And then it’s gentle again.

But it never really stops knocking.

So here we are…a few years into this blog and still going strong (well, most days). A new name. A new layout (if you use the actual WordPress site).

And an upcoming FREE dementia conference with a FREE lunch–but you have to register in advance. If you are in the vicinity of Northeast Iowa on July 19, check it out:

https://www.eventbrite.com/e/uni-gerontology-conference-building-a-dementia-friendly-community-registration

In closing, I’m going to share–with the permission of the writer– an excerpt from an email I received this week. I’ve read it about 439 times. And I’ve obsessed about my inadequate response.

Here’s what new friend had to say in that email:

I’ve just received a shiny new Alzheimers diag. Sad but relieved. I’m not going crazy it’s my brain that has broken. It’s better to have a name for the enemy. Maybe I can turn him into my buddy. I feel like I have a few years when I can still be me and do my things. After that I hope she can put me in a nursing home and move on with herself But for today I am okay. Just gotta try to be okay tomorrow and the next day and everyday. All I want to do is keep being okay and not be a bother. I think life still can be good. For now anyways But I am so scared.

I’m humbled that someone would reach out to me hours after an official diagnosis. But my response about new challenges, new goals, planning, maintaining relationships, realism, hope, and how it’s okay to not be okay fell short.

How could it not?

I can’t fix dementia and my typed words from 2000 miles away can only be so supportive in such a situation.

But when you find yourself with that “shiny new Alzheimer’s diagnosis,” you should know you’re not alone. Until there’s a cure, there’s education. There’s support. There’s life to be lived. And professionals like myself need to keep working hard to send those messages.

And when there’s a cure, I’ll happily find another way to spend my time. Maybe I’ll start that doggie daycare for senior and disabled pooches. If you think that’s a joke, you don’t know me.

But for now….I’ll keep writing because dementia keeps knocking…. (was that too corny?)

 

Why We Fall

I recently went to Wisconsin for a speaking engagement, and I went out for Chinese food with one of my most ambitious former students. She shares my passion for improving dementia care, and she’s not afraid to be straightforward in her advocacy for residents that live at the nursing home where she works as an assistant administrator.

She said, out of the blue, “You know what you should do? You should do something on falls and dementia.”

When someone tells me I should do something, I’m usually pretty unlikely to do it. However, it occurred to me that I’d never written about dementia and falls before. My former student was onto something. And I credit myself, really, because her brilliance is a direct result of my excellent teaching and advising.

Just kidding, Taya. You were brilliant before you were my student.

As you might know, dementia increases a person’s risk of falling. And falling is a big deal. A person can break a hip or get a concussion. Nursing homes and hospitals have an incentive to minimize falls…they don’t want bad press and they don’t want to get sued.

I have said for years that I could run a nursing home and guarantee zero falls. I’d just keep people in bed on sedatives all day. It’s a great solution, right?

Obviously not.

Here’s the thing about caregiving–and it’s not so different from parenting in a way. We want to minimize risk and maximize independence. But where is that balance? How can we encourage as much autonomy as possible while limiting risk?

Well…let’s start with talking about why people with dementia fall.

First of all, balance is a brain function. Dementia is a condition of the brain. In fact, it’s the cerebellum that controls balance, fine muscle movement, and coordination. When dementia impacts that part of the brain, it’s no surprise than balance is affected.

So, yes, dementia itself brings challenges with balance. Once again–louder–for the people in the back….DEMENTIA ISN’T JUST ABOUT MEMORY LOSS. (Should I make t-shirts that say that? I’m sick of saying it, and people still aren’t getting it.)

There are other ways in which dementia increases a person’s risk of falls.

I talk a lot about how dementia changes how an individual experiences the world. Dementia literally changes how you see the world. It’s not that someone is wrong with your eyes if you have dementia, but your brain may be less effective in interpreting what your eyes see.

Someone with dementia might not interpret stairs correctly, leading to a fall. Perhaps their brain doesn’t correctly interpret food that has fallen on the floor, and they slip. Maybe they don’t notice the guide bar on the wall because it’s the same color as the wall, so they don’t use it, which increases the risk of a fall. Hey–interior designers–you can help reduce falls by making some small changes to homes and facilities. Seriously, we need so much help in this area.

Fatigue among those living with dementia increases falls. It’s tiring having dementia, and we are all more likely to fall if we are exhausted. I don’t have dementia (that I am aware of), but I have a bad habit of stumbling at night because I’m too tired to pick my feet up.

People with dementia may be more tired during certain times of day, and–no surprise–falls increase during these times of day. A person with dementia who is allowed adequate time for rest is less likely to fall. In addition, falls are minimized when we allow a person with dementia to create their own daily rest and wake patterns rather than dictating these patterns. If your loved one struggles with fatigue in the afternoon, try to structure their day so they can nap or at least rest quietly during that time.

People with dementia, just like the rest of us, need to eat, to drink, and to use the restroom. If people are hungry, thirsty, or need to relieve themselves, they are likely to try to get up and meet that need solo when perhaps a little bit of help might be useful. If we regularly ask people if they need to use the restroom, for example, they might be less likely when they try to get up to do this without assistance. If we keep water nearby so they don’t have to get up and find water when they are thirsty, they might be less likely to fall.

Memory impairment itself can result in falls. Sometimes dementia (or another condition) takes away the ability of someone to walk without assistance, but if they don’t remember this they may get up and try to walk anyway. Someone once told me that she didn’t know why her dad kept trying to get up after he had knee replacement surgery. In fact, he didn’t remember that he had undergone the procedure. People forget they have walkers or canes. I once met a guy who was a lower limb amputee. He couldn’t remember why he was in a wheelchair. He was surprised every time he tried to stand up and realized he only had one leg.

“What’d they do with the other one?” he’d ask.

Sometimes poor judgement leads to falls for people with dementia. I know that I’m not stable when I walk on ice, so I avoid walking on ice. If there’s a slick floor, I walk a different way so I don’t slip. I’m a relatively clumsy being, so I try to set myself up for success. (In this case, success means not ending up on my read end on the ground.) I may be a klutz, but my good judgement keeps me from frequent trips to the emergency room.

But what if my judgement became compromised? What if I lost that inner voice that told me it’s likely I will end up on the ground if I try to walk across ice? Well, that’s what can happen with dementia. People with dementia might lose the ability to instantaneous assess the risk of a situation and therefore put themselves in environments that can be risky.

A guy recently told me how he recently took his father who had Alzheimer’s on a fishing trip. He looked over at one point and saw his father standing of the edge of a cliff, inches from a fall that would have certainly ended his life. When he was told to back up, he shrugged and told his son to stop trying to control him.

I would be negligent if I didn’t mention the role of medications in falls. I would argue that many individuals with dementia are over-medicated. There are times when residents in nursing homes and assisted livings are given medications when a change of environment, a modification of caregiving strategy, or a simply friendly conversation might have done the trick. Medications should absolutely be an option in treatment of the symptoms of dementia, but I promote the idea that medication shouldn’t be the first intervention strategy.

Why? Medications have side effects. Those side effects can include dizziness. They can include orthostatic hypotension. What is orthostatic hypotension? You know that feeling of lightheadedness when you stand up after sitting or lying down for a while? It’s due to low blood pressure. I recently learned that this is called orthostatic hypotension. It’s a common side effect for many medications, including anti-psychotics. It’s also what happens if you stand up too quickly after a 90 minute massage, get dizzy, and accidentally knock over a vase–not that I’d know.

I recently visited a nursing home and met a man with Parkinson’s who told me his hobby was going outside in his wheelchair and collecting rocks. I told him that I thought this was fantastic way to spend his time and encouraged him to keep at it. He mentioned that the nursing home staff wasn’t fond of his rock collecting. I was puzzled.

Later, someone who worked in the nursing home told me that his rock collecting often resulted in him falling out of his wheelchair. In addition, he was bringing dirty rocks inside the nursing home–not exactly a great thing for a setting where staff worked hard to create a sanitized environment.

That’s the hard thing.

We want people to be able to make their own decisions. We want them to be independent and to participate in their own self-care. We want them to feel like human beings rather than caged animals. We want people to do what makes them happy.

But we don’t want them to fall. And falling here is meant both literally and figuratively.

So we try to find that balance. And sometimes we make the wrong call.

We think Dad can take a shower without help and he falls. He breaks a hip.

We think Grandma can still go up and down the stairs to do laundry. She tumbles down the steps and is on the ground for over 24 hours before someone stops by.

We think our friend is still okay to drive but he gets into a fender bender. We think our wife can go to the dinner party she wants to attend but she leaves in tears because it’s so overwhelming. We think Grandma can make the potato salad for the 4th of July Celebration, but we realize later that she made it a week in advance and let it sit out. And the whole family celebrated the 4th by fighting over the bathroom.

These are real stories of care partners who errored on the side of autonomy. And later felt so guilty, so dumb, so ineffective.

We sometimes get burned when we try to maximize independence.

Yet when we try to maximize safety people living with dementia feel limited and argue that their quality of life is being compromised.

When do we step in?

When do we step back?

 

 

 

 

Help Me–Vote on Potential Blog Titles

Because I don’t think I can get away with calling my blog “The Blog Formerly Known as Welcome to Dementialand” (a la the Artist Formerly Known as Prince), it’s time to focus on a new title.

Thanks to everyone who submitted suggestions in the contest. You can rate the finalists here: https://www.surveymonkey.com/r/blog_title_ratings

There are several titles I really like, so I need your help. Please submit your ratings by Friday, June 1, at 11:59pm (Iowa corn time…aka Central Standard Time).

Please note there were a few suggestions that didn’t make the cut for various reasons. These include:

  1. Anything with zone, land, or ville in the title. I just decided I needed to go in a different direction and not try to come up with something similar to my old title.
  2. The Best Dementia Blog on the Planet. Also The Only Dementia Blog You’ll Actually Read. I appreciate the compliments. But I just can’t. The same goes for Elaine’s Kick Ass Blog. And I don’t think mom would like that one because it has the “A” word. You all are too kind, though.
  3. Anything that already has a presence online or in book form, even if it’s not trademarked. We are looking for something unique. Ain’t nobody gonna be harassing me for trademark infringement. (Then again, dementialand wasn’t trademarked when I started this blog.)
  4. Anything that implies the blog focuses exclusively on caregiving. Sure, we talk a lot about caregiving, but I know plenty of people living with dementia read this blog as well. I also want it to be appealing to those outside the world of dementia–because educating the general public is how we build dementia-friendly communities.
  5. Anything that mentions memory. I think that we overemphasize memory loss as a part of dementia when it is only a part of a constellation of symptoms. I don’t want to contribute to the message we give to society that dementia equals memory loss and only memory loss.

Don’t forget to help me out by rating the title options. It’ll only take a minute of your day, I promise!

Memorial Day

Dear Friends,

There will be no blog post today due to the Memorial Day holiday.

I am overwhelmed by your support and your suggestions for new blog titles. I’m not sure I can explain how much it means to me.

I started this blog with a hope of supporting those living with dementia and their care partners. I had no idea how much support would come back to me.

I appreciate you more than you know.

XOXOXO,

E

When Opportunity Knocks (About Those Upcoming Blog Changes)

Hi friends.

I know I left you in a state of suspense the other day about our big blog changes. I’m guessing some of you haven’t slept since.

Well, I hope you’re sitting down—-because we are changing the name of the blog! This will be the first change in an exciting blog reboot!

I’ll start from the beginning.

Sometimes opportunity knocks on your door, and you look through the peephole. You don’t recognize it as opportunity. In fact, it looks like a pile of garbage.

You don’t let it in at first, but you keep peeking out. And after a few days, you realize that pile of garbage is, in fact, an opportunity. You let it in.

Here’s what happened. I got a cease and desist email. Someone trademarked the term “dementialand” after I started my blog.

And, because I am who I am, I do need to make this clear. IT WAS TRADEMARKED AFTER MY BLOG WAS ESTABLISHED. It’s important to me that people understand this because I teach students to respect intellectual property, avoid plagiarism, and participate in other such ethical behavior.

This individual has a book with “dementialand” in the title and has learned that I am using I am using this term to profit and promote my goods and services.

PROFIT? WHAT PROFIT?

My first thought was that I was willing to send this person a check for every cent I have ever made from using this term. This check would be for $.00. Actually, it would be an invoice. I paid to upgrade my WordPress account so that you see fewer adds. The communication I received also referred to misuse of the term by my “company.” What company? I’m just a woman who frequents local coffee shops and eats way too many baked goods while she writes about dementia.

My second thought was that, sure, I’d change the name of my blog….How about Dementiaville? Dementia County? Dementiaworld? I’LL SHOW THEM. Fortunately, that streak of pettiness was short-lived. BECAUSE I AM AN ADULT.

My third thought….why is someone picking on me? I write this blog without any type of compensation. I do it to help people. It’s not my job (although it’s related what I do at my job). I write with the hope that maybe, just maybe, I can help someone out there in a small way. This blog is my way to, hopefully, make this world a slightly better and kinder place.

I have talked to a couple friends with law degrees, and both indicated a few reasons that perhaps I don’t actually need to change the name of the blog. But….I understand trademarks. I could have trademarked the term, but I had no interest in going through this process and restricting its use.

A few days after that initial notification, that pile of garbage started to look like an opportunity.

Here’s why I am thankful for this push to change the name:

  1. I have mentioned to several friends that if I had known people other than my mother and husband would read this blog, I would have put more thought into the name. I’ve never been 100% sold that this is the perfect name for my work.
  2. I am a lover and not a fighter. I’ve got plenty of battles to fight in my life (we all do), and this one isn’t worth the fight.
  3. I read an excerpt from the book with “dementialand” in the title. Let’s just say that the author sees dementia differently than I do. I don’t want my readers to be confused and think that I wrote this book.
  4. Sometimes you just need a change.
  5. I can do this my way, and I can make it a fun process.

Now, about that fun process.

When I first named the blog, I didn’t have a blog. I mean, I came up with a title when I had not yet written a post. I didn’t have a purpose or a target audience. I just knew I wanted to write.

Now I have content. I have more readers than I ever imagined. That means WE (yes, WE) can come up with a better title.

I really do need your help. I mean, I’m obviously a failure at naming blogs. The title I chose was one I never really liked and got me into potential legal trouble.

So it is YOUR turn.

You are invited to submit a suggested title here: BLOG TITLE CONTEST

I will choose a few of my favorites, and then we will do a poll to choose the new blog title. And, since everyone loves a contest, you will get a prize if your title is eventually chosen.

I have no idea what that prize is yet. But it will be awesome.

Your deadline is Saturday, May 25, at 11:59 CST.

Oh, and doublecheck for me to make sure your proposed title isn’t trademarked.

Onward, friends.

(Wow. Writing that was really therapeutic for me.)

 

 

 

Dementia and Dinner Parties

Human beings continually amaze me.

They amaze me in how inhumane and cruel they can be.

And they amaze me in how wonderful they are.

A few weeks ago, someone amazed me in how wonderful they were.

I was doing a presentation at a dementia conference. The vast majority of attendees were professional or family care partners. As I was chatting with people before my presentation, I asked some of the participants what they wanted to learn.

I want to learn to understand my husband better.

I want to understand what my mom is going through.

I want to learn how to calm my residents when they get upset.

I want to have a friend with dementia over for dinner and I need to know how to make it the best possible experience for her.

Wait. Rewind. What was that last one?

An older gentleman was attending a dementia conference for the purpose of learning how to make a dinner party more enjoyable for a friend with dementia.

That’s it. That’s the whole reason he spent an entire day at this conference.

He didn’t have a family member with dementia. He didn’t suspect he had dementia.

He just wanted to make a pleasurable evening for someone living with dementia and happened to see the conference advertised. He signed up.

Here was the story…he and his partner had been friends with another couple for decades. The wife had Alzheimer’s and the disease seemed to be progressing quickly. He still wanted to spend time with them. He still wanted to invite them over. He just wasn’t sure of a few things.

What do I do if she doesn’t know my name?

Does she have any dietary restrictions?

Is it okay if we have music playing?

Do we stop her if she’s telling a story and rambling on and on?

Is it okay for her to have a glass of wine?

All good questions.

We chatted for a bit after my presentation. In short, I told him to keep inviting his friends over. I said he should be prepared to roll with the punches. I said he shouldn’t pressure them to stay too long. I told him that his friend could still enjoy his company even if she couldn’t remember his name. I also suggested he work on getting his friend’s husband out to go fishing or have a few beers without his wife, if possible.

He seemed confident when he left. He seemed excited about the opportunity to have his friends over for dinner when others might be excluding them for social events.

As he walked away, I just shook my head.

People are amazing.

Dementia and Diversity—What Should We Call People with Dementia?

Recently I found myself talking to the daughter of a nursing home resident. We were discussing why nursing home staff should avoid calling residents “sweetie,” “honey,” “dear,” and similar terms. I’ve read quite a few articles arguing that such language can be demeaning when used toward older adults. I mean, you wouldn’t call your boss sweetie, right?

The daughter agreed with me.

Then her mother, who was sitting nearby, piped up.

“I like it when they call me honey. It makes me feel loved,” she said.

And I was reminded of something.

I don’t speak for all people living with dementia. In fact, I don’t speak for any of them. I speak based on my own background and knowledge. My views are shaped by my perspective on the world and my personal experiences. Sure, I listen to people living with dementia and do my best to process their experiences and feelings. But even if I were to be 100% accurate in my perceptions of where someone is at, that’s one person with dementia.

If you’ve met one person with dementia, you’ve met one person with dementia.

I stand in front of groups and talk about what you should and shouldn’t do when you interact with someone who has dementia. But is every person going to agree with my recommendations? Nope.

I recently watched a video of a man with cerebral palsy. He was talking about what annoyed him…being patted on the head, people pushing his wheelchair without asking…but then he said something interesting. He reminded everyone that he’s just one person with cerebral palsy. He doesn’t speak for everyone with cerebral palsy. Something that might be frustrating to him might be welcomed by another person.

An African-American colleague and I were chatting a couple months ago about bias, discrimination, and micro-aggressions. He mentioned that he might perceive a comment made to him as biased, whereas another African-American individual could hear that same comment and think nothing of it. There’s not an official list of what offends every African-American because African-Americans are individuals and do not share a collective brain.

My friend, Drew, has cystic fibrosis. My education would tell me to refer to her as a person living with CF. We call that “person-first” language. She’s a person before anything else. However, she refers to herself as a CFer. And who I am to explain why that’s incorrect? She gets to call herself whatever she wants.

I live in a university culture. I am constantly made aware of preferred language and current trends in political correctness. I follow the tips I’m given. I call students what they prefer to be called. (This was a particular point of emphasis when our university realized we had an increasing number of transgender students. A student whose legal name was Michael preferred to be called Lucinda. And I have no issue with that.)

It’s in my nature to prefer things to be black and white, so I like to be given rules. Either I’m right or I’m wrong. And I can point to a piece of paper to show someone that they’re wrong. But I’m not sure it’s so simple here.

Recently I wrote about why we shouldn’t refer to people living with dementia as dementia sufferers. Sure enough, I heard from a few people with dementia who preferred to be called dementia sufferers. They felt like saying they were living with dementia rather than suffering from it painted too rosy of a picture. They wanted the world to know how challenging dementia was—and they felt like using the term dementia sufferers was the best choice to really represent dementia.

And that’s their experience. I can’t argue with their experiences.

We make recommendations of what to call individuals and how to interact with them, but we do this at the group level. And people living with dementia are just as diverse as people living without dementia. They have different preferences. They have different likes. They have different needs.

This isn’t about me. It’s about them. So I need to adjust.

I was talking to a woman in early-stage dementia about this a while back. I asked her if she considered herself to be a dementia sufferer or a dementia patient or a person with dementia or a person living with dementia….

She laughed and said, “I don’t know. You can just call me Clara.”

I wasn’t sure what to make of this–because her name was Sue. I wondered if she’d had a cognitive lapse.

“I’ve always wished I were named Clara,” she said.

From then on, I called her Clara.