Category Archives: dementialand

Lessons Learned From Writing About Dementialand for Two Years

alzheimer's, alzheimers, caregiver, caregiving, dementia, dementialand, Uncategorized

It’s hard for me to believe, but I’ve been writing this blog for almost two years now. This is my 125th post. Some good; some not as good; some fairly mediocre at best.

This adventure has been a far greater learning experience for me than for any of my readers.

Here are some things I’ve learned:

  1. I can’t write a blog post before 9 pm. I just…can’t. I’ve tried and nothing happens. The only exception occurs if I am at a coffee shop.
  2. I am better writer with exactly one glass of wine. One glass makes me more productive, but two glasses makes me fall asleep. (And, for the record, red gives me acid reflux.)
  3. I’m a writer. When I was a kid, I said I wanted to be a writer when I grew up. I even had a pen name, Keisha Wrippen (inspired by the actor, Keisha Pulliam who played Rudy on The Cosby Show). I wrote a series of books about the Kit family. They either had 7 or 17 kids. As a child, I loved to write. As a grown up, I love to write. Writing may not be my full-time job, and I may not make a cent off of this blog, but I’m a writer. Maybe I have been since I started that series on the Kits.
  4. My mom doesn’t like it when I use the word “crap,” as in “what a bunch of crap,” in my blog. I do it anyway because I’m a rebel.
  5. People are nice. I cannot tell you how much those of you who have reached out to me with a compliment or an interesting anecdote mean to me. I appreciate when you let me know that you relate to something I wrote. From the bottom of my heart, thank you. Connecting with all of you has been the highlight of writing this blog. (And a special shout out to those of you who subscribe via email. I am proud that you let me clog up your inbox along with those Nigerian princes.)
  6. People are not nice. I am not referring to most people, fortunately. Really, I think most people are nice, but I have had a few not-so-nice people write not-so-nice things in the comments of my blog. They are usually not directed at me. They are typically negative  and derogatory comments about people with dementia and/or older adults. I don’t “approve” these comments, so you can’t see them. For the record, I won’t “approve” them in the future, so don’t waste your time. If you are going to spread negativity, you’re going to have to do it elsewhere.
  7. Dementia is a tragedy, a comedy, and a love story all at once. The comments and emails I get from people range from sad, to funny, to heartwarming. To those who have started off a message to me with “I shouldn’t find this funny but….,” it is okay that you find it funny.
  8. On a related note, families impacted by dementia amaze me with their humor. They can find humor in the most challenging situations, and they need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.
  9. You can get Facebook messages from people you aren’t friends with on Facebook, but they seem to end up somewhere beyond the normal Facebook realm. I just discovered about 25 Facebook messages that readers have sent me over the past couple of years. I apologize for not responding. I wasn’t blowing you off. I still have a lot of learn about the intricacies of social media.
  10. Writing makes me look at the world differently. Instead of thinking a situation has gone poorly or feeling that something is futile, I ask myself what I have learned that I can share with my readers. Realizing that there is a lesson to be learned or even a conversation to be started has made me look at the world with a bit less negativity and more of an eye toward progress.
  11. People with dementia are pretty amazing. Many of you write insightful responses to my blog in the comments, and some of you have your own writing outlets where you express your experiences and ideas. I want you to know that I appreciate this. It’s not easy to put yourself out there when you have a dementia. You are brave, and I cannot thank you enough for teaching me. Your voice will always be stronger than mine when it comes to educating people about dementia. Special thank you to Melanie and Lisa, who have courageously put a face on younger-onset dementia. When I think of the reasons we need to continue to do research on dementia, you and your families are at the top of my list.
  12. I need to stop making assumptions. There are so many times when I size up a situation and think someone is going to be struggling, and they’re okay. Sometimes I think a certain situation is going to be difficult for a caregiver, and they tell me it really wasn’t that bad. On the other hand, I sometimes don’t think much about a situation and realize later how difficult it was for a family. I don’t know unless I ask. We are diverse human beings. We interpret the world differently. Sometimes I try to empathize with a person, but what I’m really doing its projecting how I think I would feel onto them–but they are not me. That’s not really empathizing. It’s assuming.
  13. Reality isn’t as important as connection. If there’s a lesson I’ve tried to convey repeatedly, it can be summed up by that phrase. As I write about Dementialand, visit Dementialand, and talk about Dementialand, I am pleasantly surprised at how people can connect in a positive way despite not sharing a perception of their relationship and the world around them. I could write pages of transcripts of conversations that would make no sense to outsiders. The sense comes from those of us who choose to connect with people with dementia rather than correct them. I’ve noticed that ironically sometimes those with dementia are choosing to do their same in their interactions with us. Sometimes reality isn’t all it’s cracked up to be. We can see the world differently and still connect…I think there’s a lesson there in this age of America.

So that’s it. Or maybe that’s not it–because this is only a small portion of what I’ve learned.

See you in 2017!

Improv and Dementialand (aka There Are No Scripts in Dementialand)

dementia, dementialand, lewy body dementia

I have a friend named Drew Dotson. She lives in Atlanta and performs at an improv  comedy theater. Not only does she perform improv (and does so amazingly well), she teaches improv. If you’re not familiar with improv, think of Whose Line is it Anyway, only the Drew I’m talking about is more impressive than Drew Carey.

Drew also has a family member with dementia. It was during a conversation with her that I came to see a connection between improv and dementia. To be fair, I can’t take credit for that realization. I think Drew actually said, “Dementialand sounds a lot like improv.”

I did some thinking. I pictured Drew and I traveling around the country doing trainings for dementia care based on principles of improv. I was thinking of all the hotels we’d stay at, the free continental breakfasts we’d share, the bonding time and snacks we’d have on the road as highly sought after public speakers….

A day later I Googled “dementia care and improv.”

Bubble burst.

Unfortunately, or maybe fortunately, the idea wasn’t unique. In fact, there’s a TedTalk out there on the topic:

http://tedmed.com/talks/show?id=526821

It’s the TedTalk that Drew and I could have done had we had our conversation a bit earlier–but that’s okay. The bit of information out there linking improv to dementia care has helped me to understand why spending time in dementialand has been valuable for me…and made me a better person.

As dementia progresses, interactions with people can become more unpredictable. I have had to let go of my expectations of that interaction, just like you have to enter an improv scene without expectations of where the scene might be headed.

This is very much in contrast to the rest of my day, which is often taken up by university meetings with agendas emailed out in advance. At work meetings, I am known for efficiency. In fact, a colleague once mentioned to another colleague that I was “brusk” during meetings. I probably should’ve been insulted, but I took it as a compliment to my efficient nature. We stick to the agenda. We get through the agenda. We conclude the meeting.

Visiting dementialand means dropping any agenda at the door. It means letting go of any expectations of what will be accomplished during the interaction. I’ve even started to think of interactions with people who have progressed dementia like scenes in improv theater. I am participating in the scene, as is the person with dementia. I cannot allow myself to dictate the scene.

Just like in improv, all players have to have equal status–even if some of those players have limited verbal communication skills. I can’t write the script in advance. If I try to do that (and I have), the scene usually turns into a disaster. There are certain areas in my life where I lack flexibility. Dementialand is not one of those areas. You don’t survive in dementialand if you are rigid and inflexible person.

In my limited knowledge of improv, I understand that the first rule is to SAY YES! Don’t say no to a suggestion. Agree. Go with it. Wherever the scene goes, you follow. As a college professor, I often have to keep a class on track during our class meeting time. I have to judge whether or not where I think the students are headed on that particular day is useful for their learning. And then I might have to right the ship. I can’t always say yes. I can’t always go with it. Back to the agenda, so to speak. I also have to correct and clarify any information from other players (in this case, students) that might be factually inaccurate. Dementialand is different.

Case in point…I was spending time with a group of people with moderate dementia last week. We were doing an exercise where we were trying to name different types of flowers–an exercise that was dictated and moderated by me.

And then, out of the blue, this conversation evolved:

Person #1: I have a question for you. Do you take calcium pills?

Me: In fact, I do. I take one every morning.

Person #2: On TV they said that calcium makes your bones break.

Me: I hadn’t heard that. I’d better be careful then. I’ve taken them for a long time now.

Person #2: Don’t ride your bike. A car will hit you.

Person #1: Not always. You don’t always get hit by a car when you ride your bike. I know people who ride their bikes and never get run over.

Person #2: ALMOST always though. Maybe not ALWAYS.

Person #1: Then don’t ever ride your bike, Elaine. We love you and don’t want you to break.

It was the nicest thing anyone had said to me all day. Maybe all week. If I had tried to dictate the scene and make them continue to list types of flowers, I never would have heard it.

Sometimes when I ask a question in dementialand, I don’t get an answer to that question. Sometimes I get information that is tangentially related to the question I asked; sometimes I get information that is completely unrelated to the question I asked. If these were answers to my college students’ essay questions on an exam, they wouldn’t score well. I would be handing out loads of Ds and Fs like candy. But this is dementialand; not a college class. The rules are different. My role is different.

I have found that I learn the most when I listen, really listen, to the response to a question I ask someone with dementia–even if the response isn’t actually an answer to my question. I need to let go of my question, which I often realize wasn’t all that important anyway.

When I ask someone about their wife and they tell me about their dry skin, that’s not a fail. When I question someone about whether they are enjoying the weather and they tell me about their brother who died in the war, it’s okay. Sometimes I ask a question and get an answer that is based on their reality rather than my reality. In other words, their answer makes no sense to me. I’ve learned to roll with that rather than allow it to end the scene.

In fact, sometimes the conversations that make the least sense are the most fulfilling for me. I had a great conversation with a guy with younger-onset Alzheimer’s a few weeks back about the drawstring on his pants. He seemed to think they were worms and snakes crawling out of his stomach, although he wasn’t at all bothered by them. Then he pleasantly warned me about the bugs that he could see crawling around under my scalp. (And yes, I was somewhat itchy the rest of the day.) The connection happens when I tune in to what someone wants to tell me rather than trying to script the conversation.

When you follow improv rules in dementialand, dementialand becomes a more positive, rewarding place. It makes interaction easier for those with dementia, but (and I’m being selfish here) it also makes things a lot for fun for me.

Living in the Moment and Planning Ahead in Dementialand

alzheimer's, caregiver, caregiving, death, dementia, dementialand

I spoke to a group of professional and family caregivers last week. After talking for an hour and a half, I was gathering my belongings (including some delightful chocolate turtles and a classy purple umbrella that the Alzheimer’s Association gave me for speaking) when a professional-looking woman walked up to chat.

Her mother has Alzheimer’s. Although they’ve discussed a memory care community, she lives at home with her husband, and she has a lot of good days. Once in a while she can’t find the bathroom. She’s no longer able to drive. And they gave their beloved dog to a family member because they were worried she was going to let it outside and forget about it. However, life is okay right now.

She goes to church every week, and she has a great group of friends who pick her up for lunch regularly. She still cooks every evening even if her husband has to help a bit more than in the past. She even volunteers at a local nursing home to help the “old people” play bingo.

But they’re scared. They understand Alzheimer’s is a fatal disease. They’ve watched the Glen Campbell documentary. They’ve scoured the Alzheimer’s Association website. They want to know everything they can to be as prepared as possible for the journey ahead. In many ways, they are the type of family that I appreciate working with–they actively seek out information to assist their loved one now and in the future.

Yet, there’s a point at which people can become too fixated on the diagnosis. There’s a point where education and preparation morph into worry and anxiety.

“All I think about all day is my mom,” the woman tells me. “I think about what her future holds and when she’ll be in a wheelchair. When I close my eyes, I picture her in a smelly nursing home being taken care of by people who don’t even know her.”

She asks me about a timeline. She was diagnosed a year ago, and the doctors says she’s in stage 4. How long will it be until she can’t live at home anymore? How much longer will she be able to walk? And talk? When will she be incontinent? And when will she die?

“We just need some estimates so we can plan, you know, financially,” the woman tells me. I’m a planner by nature, so I understand.

Although I understand, I’m not much help.

You may have read about the seven clinical stages of Alzheimer’s. If you haven’t, you can learn more here:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

There are times I find the seven stage conceptualization useful. When professionals communicate with other professionals, it’s valuable to be able to indicate a person is in stage 3 or stage 6 to quickly relay information. (I will add that I hate when people are referred to by their stage, as in “She’s a stage 6;” she may be in stage 6, but she’s not a stage 6. There’s a difference to me.)

I’ve found that sometimes my attempts to discuss the progression through stages with families have not been successful. When I say someone is in stage 4, they want to know how long stage 4 lasts. They are unsatisfied when I say something vague like, “It varies.” They want to know why their loved on is classified in stage 3 when their verbal skills appear like the verbal skills of someone in stage 6. I say something like, “Various areas of the brain decline at differing paces.”

I typically end up saying that these stages aren’t an exact science…and they’re not. It’s not like a person goes to bed in stage 5 and wakes up having transitioned into stage 6.

I have started to use the terms early stage (mild), middle stage (moderate), and end stage (severe) rather than the seven stage model when I talk to families. Still–families want to know the length of each stage. I don’t know how long early stage will last for each person, nor do I know how long middle stage and end stage will last. My hope is that most of the duration of the disease is spent in the early stage. When I share that thought with families, they usually agree.

I give families a really hard task when I visit with them. I tell them to be prepared, as much as possible, for the realities of the disease. Obviously, you have to look ahead to be prepared. In the next sentence, I tell them to focus on the moment–because that’s how you find joy when you live with dementia.

And, if you think about it, it’s how we find joy in life more generally. We lose the joy in the moment if we think too much about what could happen in the future. Yet, if we fail to plan we plan to fail (or so my high school economics teacher told me).

Plan ahead and live in the moment.

How do you even do that?

I struggle to do it in so many areas of my own life. Sometimes I can’t even enjoy a Sunday evening at home because I’m too focused on the tasks I have to accomplish in the week ahead. And, if I’m being honest, I have anxiety that boils down (like most anxiety) to not being able to focus on life in the moment. Like many of us, I can’t shut down a fixation on potential future events that may or may not ever actually occur.

A few years ago I read a book called Always Looking Up: The Adventures of an Incurable Optimistic by Michael J. Fox, who is an admirably optimistic person, as you might guess by the title of his book. He points out that we often worry about the worst case scenario, and the worst case scenario rarely happens. He also mentions that, even if the worst case scenario does occur, worrying forces you to live that experience over and over when you really only need to live it once.

This part of the book had such an impact on me that I remember exactly where I was when I read it. I was sitting in the Minneapolis airport right next to a fast food Chinese place called “Wok & Roll.” Now whenever I pass that same “Wok & Roll” during layovers in Minneapolis I think of Alex P. Keaton and Marty McFly. Never in my life has a book had such a strong association with a place.

Michael J. Fox is right, of course. Worry is a waste of time. Although it may be that simple, it’s not that easy. Worry cannot be that easily turned off by those of who are prone to it. Logically reasoning yourself to shut down your anxiety isn’t necessarily effective. In fact, it may increase worry because then you worry that you’re worrying too much. Meta-worry.

As you can probably sense, minimizing worry because worry isn’t productive is something that’s challenging for me. And I know I’m not alone in this.

How am I supposed to give people tips on how to plan ahead and live in the moment in the face of a dementia diagnosis?  I can think of few things I’m less qualified to do.

The woman I spoke with last week was trying to planning ahead. I couldn’t fault her approach. She had toured memory care communities. She had taken her parents to speak with a financial planner. She’d put a package of Depends in her parents’ laundry room…for when the times comes. She was trying her best to, as she put it, “brace for a storm.”

I want her to be able to find joy where her mom is at today. I try to figuratively pat her on the back for her efforts to prepare for the future. Then I tell her that there are no estimates for when her mom will reach certain milestones. She pushes me again to guess how many years her mom has left. I’m tempted to throw a range of numbers out, but I resist. Alzheimer’s is fatal, but each individual has their own trajectory.

She gives it one more shot.

“My daughter is three,” she tells me. “I want to know if Mom will be around when she graduates high school.”

“I’d be pretty surprised if she were,” I say. I don’t know if this is the right thing to say. I’m sure I could have been more eloquent. In that moment, she seems grateful to me.

She thanks me for chatting, compliments my sweater, and wishes me a safe drive home.

 

 

 

 

 

 

 

 

 

 

What You Hear in Dementialand

alzheimer's, alzheimers, caregiver, caregiving, dementia, dementialand

This is the fourth in a five part series about dementia and the senses.

Today we will focus on hearing.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and the same examples–except in a much louder voice.

Here is my weakness: If someone doesn’t understand what I’m saying, I just say it again…in a louder voice.

I tend to think that my original explanation was so clear that the only reason the other person would need clarification is because they have a hearing problem. If you are thinking that I overestimate my own eloquence, you may have a point.

Chances are that I used a loud voice in the first place (no one has ever complained that my voice isn’t loud enough), and chances are that the person doesn’t have a hearing difficulty. It’s likely that my explanation isn’t resonating with them for some other reason. Yet, I just repeat the same explanation that doesn’t resonate–but louder. It’s not helpful.

My weakness tends to extend beyond explaining concepts to college students. If something I say doesn’t make sense to my husband, I’ll just say it louder to clarify. I know it’s not productive, but I do it anyway. If I’m at a work meeting and make a statement that results in quizzical looks from my colleagues, I usually just repeat the statement again. And I step up the volume, of course.

Unfortunately, I do the same thing to my friends with dementia. If I ask someone with dementia a question and don’t get a response when I expect one, I figure they didn’t hear me, so I ask again in the exact same way–except louder. And, I will add, that my louder voice probably also conveys irritation even if that’s not my intention.

People with dementia may have hearing difficulties due to age or other factors, but dementia itself doesn’t impact your ears. However, it does impact how you interpret auditory data.

Sometimes I forget that people with dementia need a bit longer to process any question I ask. I have to force myself to silently count to ten as I wait for a response. After ten seconds, I force myself to rephrase (not just repeat) the question. Maybe I use more hand motions or pointing. Maybe I use a different word for an object. I change something…something other than the volume.

People with dementia often have trouble focusing on the important auditory information and blocking out the rest. While I may be able to have a conversation with the TV turned on, someone with dementia typically finds it easier to focus on our conversation with the TV turned off. When a person with dementia is struggling to have a conversation with me, I look for extraneous auditory data that can be eliminated. Can I shut the door so we can’t hear the conversation of the people in another room? Can I close a window so the noise of the cars driving down the street isn’t a distraction?  Can I turn off the washing machine temporarily so my voice doesn’t have to compete with the swooshing noise?

It’s not that the person with dementia can’t hear over these other sounds. This isn’t a matter of volume. It’s that their brain has to work hard to distinguish important auditory data from unimportant auditory data. They may become tired or overwhelmed after trying to do this for a short time, and we may perceive this as disinterest.

Once I was sitting in a nursing home lounge talking to a man with Alzheimer’s disease. I was struggling to get a response from him. I was likely repeating my questions and increasing my volume. As my attempts at conversation were failing, there was very faint knock from down the hallway. It was a visitor giving a quick tap to a resident’s door before entering their room. I could barely hear the knock and probably wouldn’t have noticed it had the man I was visiting with not responded to the noise.

“Come in! It ain’t locked!” he yelled.

If he could hear that noise, his hearing was obviously not an issue. I closed my eyes for a second and did a quick survey of auditory information.

In the distance, I heard some chatter at the nurses’ station. There was some incessant beeping from residents who had pressed their call buttons for assistance. The window air conditioner in the lounge was making a rattling noise. I could hear the shuffle of nurses’ aides hustling from room to room, and a couple of residents across the lounge seemed to be having a conversation about the weather.

A few moments ago I hadn’t been hearing any of this noise. Sure, I was taking in the auditory data, but my brain was disregarding it in favor of focusing on the conversation I was having. This wasn’t intentional on my part. I did not have to plan to block out all of these extraneous sounds. My brain did that for me automatically.

My conversation partner, who had dementia, was not so fortunate. It’s not that he wasn’t trying to be engaged in our conversation. It’s not that he didn’t care about what I was saying. It was that his mind was not perceiving what I was saying to be any more important than the slightly obnoxious hum of the air conditioning unit.

When we enter Dementialand, we need to set individuals with dementia up for success. In this particular situation, I had not done that. I had asked this man to have a conversation with me in an environment in that was not conducive to the dementia brain. Increasing my volume was not going to help; in fact, a louder voice would likely convey an intensity that would discourage rather than encourage a positive response.

Once I was talking to a woman who had vascular dementia after a series of small strokes. I asked her a question. When she didn’t respond I went to my default next step…I asked her again…only louder. Much louder.

This time she made eye contact with me. She motioned for me to come closer. I figured her voice was weak, and she wanted to make sure I could hear her responses. I put my ear close to her mouth.

“I can hear you!” she yelled in my ear. “I’m not deaf, honey! Stop shouting!”

I guess I deserved that. Apparently this woman would agree with my husband’s assessment of my weakness.

In life…in relationships…and in Dementialand…

Louder is seldom better.

And I’m a work in progress.

Mothers’ Day in Dementialand (aka What You Do Every Day Matters More Than What You Do Once in a While)

alzheimers, caregiver, caregiving, dementia, dementialand

Last week I ran into an acquaintance, Cindy, at the rec center where I teach fitness classes. Cindy is recently retired and in her 60’s. In the summer, she’s an avid outdoor cyclist. When it’s cold or rainy, she comes inside the gym to ride a spin bike.

Her mom, Edna, is in the end stage of Alzheimer’s and resides in a local nursing home. Since her retirement, Cindy typically stops in at the nursing home at least once a day. When the weather allows, she rides her bike.

When I see Cindy, I usually ask how Edna is doing. I feel like Cindy is grateful for the question but struggles to answer it. She feels like Edna is getting good care but at this point doesn’t have much of a quality of life.

“Mom had several good years after her diagnosis,” Cindy has said in the past. “But those good years are over.”

Now Edna stays in bed most of the day. Sometimes the staff puts her in a wheelchair, but she slumps over. She doesn’t speak. She hasn’t recognized anyone for a while now. It’s a struggle to get her to eat. She’s incontinent. She has what Cindy refers to as “glaze eyes.” It’s like she’s looking through people rather than at them. Her immune system doesn’t function well (yes, this is a symptom of end stage Alzheimer’s) so she’s constantly battling urinary tract infections and infected pressure sores.

When I saw Cindy last week at the rec center, she blurted out, “I think I’m a bad person. I’m not going to visit Mom on Mothers’ Day.”

Cindy told me that her own daughter and granddaughters live about four hours away. She’d be headed to visit them on Mothers’ Day, and there just wouldn’t be time to visit Edna.

Cindy had mentioned to a few people that she wouldn’t be going to see her mother at the nursing home on Mothers’ Day. They asked if Edna would have other visitors. Nope. She would have no visitors. Cindy felt like these people responded as if she was a horrible monster.

“So I’m leaving my poor mom alone at the nursing home on Mothers’ Day,” she said as her eyes welled up with tears.

It didn’t matter that Edna would not know it was Mothers’ Day or even that she was a mother. It didn’t matter that Edna wouldn’t acknowledge Cindy when she showed up or that Edna wasn’t capable of having a conversation. It didn’t matter than Edna might even be asleep for the entire time her daughter was there.

Not visiting your mother at the nursing home on Mothers’ Day still makes you feel like a loser.

And Cindy…is anything but a loser as a daughter. She invited Edna to move in with her and her own husband after diagnosis. When Edna’s care become too much for them, she researched nursing homes and found the absolute best option for care. It was a rare day when she didn’t stop by at least once, even after her mother stopped recognizing her. She made a special effort to thank the staff when they went out of their way to care for Edna. She even took her mom’s laundry home once a week and did it herself.

As Cindy was telling me about how she made the difficult decision to leave town to see her daughter and granddaughter for Mothers’ Day, my mind wandered to the people I’ve met who do visit their moms with dementia at the nursing home on Mothers’ Day–but rarely on other days. They go on Mothers’ Day because it’s Mothers’ Day and that’s what you do. Yet Mothers’ Day is only one day. Where are they the rest of the time?

I can’t be a jerk to my mom 364 days a year and make up for it by taking her out for an expensive Mothers’ Day brunch and buying her flowers. It doesn’t work that way for any of us, whether our mothers are well or sick.

I’m not saying Mothers’ Day isn’t important. I am saying that what you do most days is more important than what you do one day, even if that day has a special label.

One of my favorite authors is Gretchen Rubin, who wrote The Happiness Project, a book that changed the way I look at habits and happiness. A quote from her book that stuck with me is: What you do every day matters more than what you do once in a while.

It’s a pretty simple concept, but it’s helped me to change my life in subtle but meaningful ways. I have to create a daily life that reflects my goals and values. For instance, I have to be kind to the people I come in contact with each day to be a kind person. I can’t just go on a mission trip to a third world country once a year and call it good. My priorities have to be shown in my actions each day, not just once in a while, or they really aren’t my priorities.

I think about this in terms of marriage. If you’re not nice to your spouse every day, you can’t save your marriage by going on a romantic trip once in a while.

I think about it in terms of health and fitness. It’s better to consistently incorporate more walking into your daily life than go for an occasional run.

Your daily routine matters. Your life is made up of your daily routines. Cindy’s routine tells me that her mother is a priority to her…that she’s a caring person…that she’s doing the best she can.

I fumbled to explain my thinking to Cindy.

Finally, I asked her what advice she would give her daughter if she were in a similar situation on Mothers’ Day.

“Oh, I’d be angry if my daughter chose sitting in a boring nursing home on Mothers’ Day when she could be playing with her beautiful granddaughters,” she said.

As we parted ways, I said awkwardly, “Have a happy Mothers’ Day. You’re not a bad person!” (The term awkward is an understatement in this case.)

I have no doubt that Cindy was at the nursing home Saturday. I have no doubt she will be there today.

I hope she has found peace with not being there yesterday.

 

 

Knowing Better and Doing Better in Dementialand

alzheimer's, caregiver, caregiving, dementia, dementialand, hospice, pwd

I am driving a couple hours to southern Iowa to present at a community center. It’s a drive full of soybean fields, cornfields, and an occasional Casey’s Convenience Store. I’m listening to a Spotify playlist including (embarrassingly) artists such as Flo Rida, Salt-N-Pepa, Tracy Chapman, the Jayhawks, and the Jackson 5. There may or may not be one, and only one, Justin Bieber song.

I’m not sure if there will be fifteen people or a hundred at this deal. I’m not even really sure exactly what I’m going to talk about. I don’t know if most of my audience will have experience with dementia or have shown up because they saw a flyer and didn’t have anything better to do on a Tuesday night.

When I arrive, the woman who invited me to speak gives me a BP gift card and a small loaf of homemade zucchini bread. (I will later eat 3/4 of the bread on the drive home when I realize the Subway in this town closes at 9pm.) About 70 people show up, and they are overly thankful that I’ve made the trip. My audience is seated in folding chairs. I am at a podium on a stage. One woman tells me that her granddaughter was in a dance recital on the very same stage over the weekend. I tell her that’s a hard act to follow.

I give what I call my “Dementia 101” info. Then I do a little role play and demonstration to show how to approach and communicate with people who are in the later stages of dementia. My crowd is fantastic. They laugh at all the appropriate times. No one’s cell phone rings. Sometimes when I do public speaking I feel like I’m on my game (I could also write multiple blog posts about when I’m not on my game), and tonight I’m on my game.

An older woman sitting in the back row asks a lot of questions during my presentation. They’re good questions. They are questions that only someone caring with a loved one who has dementia asks.

How do you know when it’s time to take someone to a nursing home?

What do you do when someone with dementia tries to take their clothes off in public? (When she asks this question, a few people in the front row turn around to look at her.)

Should you take someone off their dementia medication, like Namenda, when they are in the end stages?

What’s the best way to handle it when they don’t know who you are anymore?

How do you feel about feeding tubes when people stop eating at the end of life? (The first words out of my mouth are “Not good.”)

I do my best to address her questions. To be honest, I think I do a pretty good job providing her with some options and ideas that might be effective.

After I get done with my presentation, several people come up front and form a line to chat with me. For experience, I know that listening to these people’s stories will take almost as long as my presentation itself. This is the reason by husband knows to expect me home at 11 when I say I’ll be home by 10.

The woman from the back row is in line. When she gets her chance to talk to me, she has a few more questions. Again, they are good questions. She wants to know what a person should tell their grandchildren about why grandpa doesn’t know who they are. She asks why people with dementia may not be able to sit up straight, why they slump in their wheelchairs, and what you can do to get them to sit up when they won’t. Then she wants to know if people in end stage dementia should just be left alone when they lie with their eyes closed and refuse to open them–or if it’s okay to shake them just a little to get them to open their eyes.

I do my best, but I admit I don’t have all the answers. Maybe I really don’t have any answers, just some thoughts and ideas based on my experiences. She thanks me for making the drive and tells me to watch out for deer on the way home. And then she says something that makes my heart leap to my throat.

“My husband died from Alzheimer’s a few months ago,” she confides. “Now I know all the mistakes I’ve made. I had no idea about all this stuff.”

She says this in a way that is matter-of-fact and not bitter. However, it stings me. I thought I was giving her helpful advice, whereas I was actually unintentionally pointing out her mistakes. She manages a smile and walks away.

I turn my attention to the next person in the line, but something nags at me. A part of me wants to catch the woman as she walks out of the community center. I have no idea what to say when I catch her, and I’m not sure if she’d want to be caught. I let her go.

On the way home, I think about the woman. She’s weighing so heavily on my mind that I don’t think to start my Spotify playlist until half an hour into the drive. My favorite Maya Angelou quote keeps coming to mind:

Do the best you can until you know better. Then when you know better, do better.

It’s something I tell myself a lot when I think about my own professional and personal life. When things go wrong, it’s often because I didn’t have the experience or knowledge to do better. (Of course, there are those times I mess up even though I do know better.) I also use this quote a lot with my college students. You didn’t know better. Now you know better. Don’t screw it up again. 

The reason the quote keeps coming to mind is that, in this particular case, it doesn’t work. The woman doesn’t have another chance. She did the best she could with the knowledge she had. She probably wouldn’t admit it, but she probably did okay. Yet now she has more information….because for better or worse I gave her more information. Now she knows better, but she can’t do better. It’s too late.

If I had known her husband was dead, I might have answered her questions differently. I’m not sure exactly how…but I might have at least changed my delivery even if I didn’t change my content. I wish I had known. There’s no real way I should’ve known, of course, but I wish I had.

I have to wonder if she made the right call by coming to listen to me speak. I’ll probably never know.

Maybe it’s better to think you did your best and not realize there’s more you could have done.

 

 

 

 

 

Why You Shouldn’t Tell People in Dementialand to Calm Down (Oh, and Avoid Telling Other People to Calm Down, Too)

alzheimer's, dementia, dementialand

No one, in the history of the world, ever calmed down because someone else told them to calm down.

Case in point.

A few years ago, I was in the emergency room for kidney stones. As they were admitting me for pain control and eventual surgery, a nurse came in to put an IV in my arm.

Needless to say, it wasn’t one of my best nights. I was rolling around in pain and gripping the sides of the bed. I remember sweating profusely. I had been vomiting and couldn’t stop trembling. I wasn’t sure if they could get the pain under control, so in addition to pain I was dealing with anxiety.

The nurse, yielding a needle, got in my face. With her nose about three inches from mine (at least as my memory serves), she said firmly, “Now just calm down.”

I’m hoping that’s not a line she uses a lot. If it is, I’m surprised a patient in pain hasn’t managed to stick that needle through her forehead yet.

If I hadn’t been such a mess, I would’ve said something like, “Thanks for the tip. I thought I was looking pretty cool by writhing around in pain here, but you’re right. I’m gonna just chill.”

Rather than calming down, as my unhelpful nurse had suggested, I became more anxious.

The more I think about it, the more I realize that this is a natural response to the suggestion of “Just calm down.”

There was the time someone tried to steal $63,o00 from our bank account by, in short, stealing my identity. (Like most people, we don’t have $63,000 to steal, and this actually helped the situation be resolved more quickly in the end.) I got on the phone and called our bank. As I was trying to explain what happened, the bank employee on the other end said, “Okay, now just calm down here.”

As if panic was not a valid response to having your identity and more money that you technically had stolen from you?

I’m not sure she could’ve said anything that frustrated me more.

Why does being told to calm down have the opposite effect?

When we are told to calm down, the other person implies that we don’t have reason to be upset or frustrated. It implies that we are overreacting or that our feelings about a situation don’t matter. It implies that we aren’t being listened to or understood.

Unfortunately, we frequently tell people with dementia to calm down. If you have said this to person with dementia (which I have), I’m gonna go out on a limb and guess it wasn’t an effective strategy. My guess is that they felt like you weren’t listening to them. And you probably weren’t. They likely felt disregarded. And, they didn’t calm down. I’d be willing to bet that they got more anxious. They might have even become aggressive.

A woman at a memory care community in my town was once convinced that there was a bomb under the building. She tried to leave, and she encouraged everyone to come with her. When she realized she couldn’t leave, she freaked out. And that’s a logical reaction to her reality. If I thought there was a bomb under the building I was in and realized there was a code on the door that no one would tell me, I’d freak out as well.

She was told to….just calm down. Imagine yourself in her situation. You have information that you and others in the vicinity are in a dangerous situation. And you are being told to….just calm down.

The woman tried to explain the situation to yet another person, who cut her off dismissively yet again. Finally, she shouted, “If one more person tells me to f***ing calm down, I am going to f***ing slap them!”

I like to promote peace rather than physical violence, but if you work in a memory care community and frequently use the phrase calm down, maybe this wouldn’t be the worst way to learn a lesson.

So what works instead?

I’m not sure it matters if someone has dementia or not. When someone is upset, you take the time to listen to what they are upset about. You don’t dismiss their concerns (even if you don’t share them). You try to see their reality (even if it’s not your own).

Think about it. How do you like people to respond when you are frustrated, sad, anxious, or angry? How do you feel when someone tells you that you need to calm down? And how is that feeling any different if the reality you are upset about is a different reality than the one the others around you are experiencing (and I’m not just referring to dementia here–we all live in different realities)?

Recently I was doing a group discussion with ten individuals who have dementia. In about five seconds, a women went from enjoying a chat with the group to being convinced that no one liked her and everyone was “stabbing her in the back.” Of course, in my reality (which is irrelevant in this situation) her perspective made no sense. No one had said anything negative to her. All of the conversation had been pleasant. How could she be okay with everyone…and then not okay?

As she got up (and I worried she might hit someone), my instinct was to say “Now calm down.” But–keeping in mind that I’m quite ineffective when I use this direction with my husband, my college students, or my friends with dementia–I stopped myself.

“Can we step outside for a second?” I asked her.

She followed me outside the room. It took a minute for her to maneuver with her cane, so I had a moment to think about what direction I wanted to go.

I said, “I want to understand why you’re upset.”

She gave me a long explanation of why she felt alienated by the group. To be honest, I couldn’t follow most of it. I listened anyway. Then she told me someone had kicked her under the table. I had no idea if this was true or not, and I didn’t waste effort trying to figure it out. It made no difference.

“I can understand why you’re upset,” I told her. “Do you want to go back in or would you rather go watch TV in your room? I totally get it if you don’t want to hang out with these people.”

There was a long silence before she said, “I want to go back in. It’s okay.”

I’m not giving myself too much credit here. I don’t want to act like I have all the answers because it’s common for me to have situations like this blow up in my face.

But sometimes the best way to get someone to calm down is to deliberately avoid the words “calm down.”

I’m trying to strike those words from my vocabulary.

 

 

 

 

Jesus, Faith, and Coping in Dementialand

dementia, dementialand, lewy body dementia, nursing home

A woman explained to me that her mother, who has Lewy-Body dementia, had forgotten how much she loved Jesus.

Ella, as I will call her, had always gone to a Baptist church. She wasn’t pushy or overbearing about religion, but it was important to her. She was well-respected at her church for her willingness to prepare food for funerals and help with gardening on the church grounds.

After Ella’s husband died, she relied on her faith and church family even more. When she was diagnosed with Lewy-Body dementia, she told her family that God would get her through that as well….except, as her daughter explained, it didn’t really happen like that.

First, she got in an argument with the pastor of her church. Her daughter wasn’t really sure what the argument was about, but it soured Ella on going to church. A couple of times she went but walked out in the middle of the serm0n muttering to herself. Then she stopped going altogether. People offered to drive her, but she declined. She said she had too much to do around the house.

Her daughter noticed that the “Verse of the Day” calendar that Ella kept in the bathroom had been scribbled on. Ella had crossed out a particular verse and written beside it “No!” in big green letters. Her daughter searched for the significance of why that specific verse was crossed out but came up with nothing. She found other “verses of the day” that had been ripped in half. On one verse, Ella had crossed out “God” and replaced it with “dog.”

The Bible that Ella had kept on her nightstand for years had now been pushed under her bed. When her daughter discovered it, she noticed that it appeared certain pages had been burned with a lighter. After being asked about the Bible, Ella said her daughter “might as well just throw that thing away.” I wondered aloud if Ella had some hallucinations or delusions that might have resulted in her burning her Bible. Her daughter shrugged.

Ella moved to a nursing home and had an opportunity to attend church services every Sunday. However, she had no interest. A pastor from her church (not the same one she argued with) came to visit several times but she had no interest in talking to him. She just sat staring straight ahead. She didn’t even look at him. Eventually the pastor told Ella’s daughter that he would keep Ella on the prayer list but didn’t see a purpose in continuing to visit. A few old church friends came to see and pray with her, and she told her daughter she didn’t want to those “busy bodies” around any more. She was convinced they were badmouthing her to the other members of the church.

“I don’t know if she forgot how important church and faith were to her or is mad at God,” Ella’s daughter told me. “But it breaks my heart that the thing that brought her the most comfort in her life isn’t there for her now when she needs it the most.”

I wasn’t sure what to say. Lewy-Body dementia, like other forms of dementia, makes people apathetic. Things that used to get people excited and engaged lose their impact. Often times, individuals are no longer passionate about what they used to be passionate about. I wish there was some type of exclusion for a person’s faith, spirituality, and religion, but there isn’t. Dementia can take that, too.

David Snowden wrote a book in 2002 called Aging with Grace. It’s about his research on Alzheimer’s disease using Catholic nuns as sample. There is one nun in the book who worries about forgetting God as she develops Alzheimer’s. However, she finds comfort in knowing that God won’t forget her.

I repeated this story to Ella’s daughter, hoping that it would bring her comfort as well. It didn’t.

“But I kinda do feel like God has forgotten her,” she said. “How can God allow her to get a disease that makes her forget Him?”

I didn’t have a good response. And I think that’s okay. I think she just needed a listener–not a religious expert.

This post really isn’t about religion. It’s about dementia.

Here’s my message about dementia today…

Imagine you are fighting one of the greatest battles of your life. You’re facing incredible challenges and struggles. But the coping mechanisms you’ve relied on your whole life aren’t available to you… Maybe that’s your faith. Maybe it’s not. Whatever you used to get through life is–gone. You reach for it, and it’s not there. How do you cope when what you use to cope is no longer an option?

Ella’s daughter and I did figure something out. We found an old CD of hymns and played it for Ella. I can’t say she lit up. She certainly didn’t sing, and she didn’t say much. I don’t even think she smiled. She looked over at the CD player and nodded.

“Should we play hymns again for you, Mom?” Ella’s daughter asked.

Ella responded, “Well, if you like them.”

It was something.

 

 

 

The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)

alzheimer's, caregiver, caregiving, death, dementia, dementialand, dying

When I first started writing this blog about 16 months ago, the only feedback I received was positive. Overwhelmingly and sometimes ridiculously positive. I repeatedly heard that it was smart, insightful, funny, and poignant. At that point, my readership included only my mother, my husband, and about four friends. None of them had a negative word to say unless it was to point out a typo.

My readership has expanded. I have “subscribers.” Sometimes I see that my blog gets shared on Facebook by people I don’t know. Of course, most people who write a blog hope that more than six people read it, so this is a good thing. However, it’s forced me to realize that not everyone always finds my blog smart, insightful, funny, and poignant.

At first, I wasn’t okay with this. People’s criticisms (especially when they are mean rather than constructive) cut me hard. I lost sleep. I was in a foul mood. I spent hours crafting email rebuttals to the emails I received. If you’re wondering what types of critical emails I received, here’s a brief summary (paraphrased) of some readers’ thoughts….

You don’t know anything about dementia unless you care for someone with dementia 24/7. You can’t learn about Alzheimer’s by getting a PhD. You probably have never even provided care for someone with dementia. You act like everyone with dementia is the same when they’re not. You don’t know the difference between the terms Alzheimer’s and dementia (this person was kind enough to send me a Wikipedia link to clarify–ummm–thanks?). You need to write from a Christian perspective. There are diets that cure Alzheimer’s, and you should be writing about that.

I once had a guy email me and insist that the Alzheimer’s Association already had a cure for Alzheimer’s but didn’t want to reveal this because they’d all lose their jobs. He seemed to think I was in on this conspiracy. I was a bit flattered that he’d think I, of all people, would be in on this conspiracy.

There’s a reason I only look in my spam folder about once an month, and it’s not those Nigerian princes whose whole families have died in tragic bus accidents.

Comments like this used to sting, even if they were off-the-wall and ridiculous. I’ve gotten in a few passive-aggressive email and Facebook arguments in an effort to defend myself. In fact, it’s hard for me to revisit these criticisms here without writing a rebuttal to each, but I’m not going to give in to that urge. That’s not what this post is about. (And I must admit writing this blog has really helped me develop thicker skin. Furthermore, I’ve realized that people’s comments are more a reflection of where they are in their journeys with dementia than my work, and I’m not saying that some people have not had valid points.)

This post is actually about the two most common criticisms I get about my blog. And that’s where I will squeeze in that rebuttal.

One of these criticisms, which commonly comes from caregivers, is that I portray dementia in too positive of a light…that I look at this through rose-colored glasses…that I find positivity and humor where there is none. The other criticism, ironically, is that I portray dementia too negatively…that I focus too much on the end and not enough on the years that people with dementia can live purposeful and fulfilling lives.

My hope is that someone who reads my blog regularly (although I don’t expect anyone except my mother and husband has read all 101 posts) would not make either of these claims, but I can understand these criticisms coming from someone who has read a few posts here and there. Sometimes I am more negative, and sometimes I am more positive. That’s a reflection of my recent experiences with dementia and likely a reflection of my mood and other events in my life as well. I have my own ups and downs. Sorry not sorry.

When I started this blog, I didn’t have a master plan. You give me too much credit if you think I set out to portray dementia negatively or positively. There was certainly never an agenda. I set out to share my own insights and experiences. I just desperately hoped I could find something to write about each week and not make a fool of myself. In time, that hope turned into fear that at some point I would not be able to find a way to work “Dementialand” into each and every blog post title. I had a dream one night that I wrote an absolutely brilliant post but never published it because there was no way to incorporate “Dementialand” in the title. I woke up in a cold sweat.

This blog is where I’m at on a particular day. And, although I had no intention of portraying dementia positively or negatively, I’m somewhat glad that I can fall on both ends of the spectrum. In a way, I’m proud that I get criticized for being both overly positive and overly negative.

There’s a risk in shedding a positive light on dementia. The general public doesn’t understand what Alzheimer’s and related dementias do to people. People still think this is just about forgetfulness–telling the same annoying stories repeatedly–having to be reminded to brush your teeth–calling your grandkids by the wrong names. As a society, we need to understand it’s much more. We need to understand that dementia kills people…and not just old people. The risk in minimizing the seriousness of diseases that cause dementia is that this hurts the efforts of those who fundraise to increase support and research.

However, there are people out there diagnosed with Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia, and vascular dementia living quite well. There is something between diagnosis and death. It’s called life. Someone with early-onset Alzheimer’s recently told me that she’s dying from Alzheimer’s and living with Alzheimer’s all at once, but she’s thinking about the living part. She estimates she has one or two “good” years left. She refuses to waste them. As I write this, she’s in Hawaii with her family. She knows it’s probably one of her last vacations, but she’s there now.

Dementia is about death and dying. Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia…all terminal diseases. Dementia kills people, and I can’t apologize for being blunt on that. I give several community presentations on dementia each month, and people are still not getting this. They act offended when I mention that dementia is fatal.

And yet many of my friends with dementia have good lives. They smile. They laugh. They love. They spend time doing things that are meaningful to them. Some people with dementia are happier than some people without dementia. Some people with dementia are happier than…me. I can use the terms hope and dementia in the same sentence.

None of that changes the reality of the struggles and challenges of dementia. None of that changes the need for more funding and research. None of that changes the fact that no one should have to forget their loved ones. And none of that changes the devastation of these diseases.

So before you send me an email about how my blog is too positive or too negative…a couple things. First of all, make sure you’ve read more than one post. And second, know that I’m not trying to convince you of anything. I’m not trying to tell you that dementia is no big deal. I’m not trying to tell you that dementia steals every joy in life upon diagnosis. Neither is true.

Life ain’t a fairytale–whether or not you have dementia. Stuff goes all wrong, but you have to find a way to survive and (when you are able) thrive. It’s not that life is good and then bad and then good again. Life can be good and bad..and funny and sad and poignant and a million other things…all at once.

Mean Girls in Dementialand

aging, alzheimer's, dementia, dementialand, nursing home

When I was in graduate school, the movie Mean Girls came out. If you haven’t seen it, I don’t recommend putting it on your priority list, but I have to say it was thought-provoking for me–at least as thought-provoking as an American teen comedy can be.

Here’s the premise. The movie, which stars Lindsay Lohan (post-Parent Trap but pre-shoplifting), features a clique of 16-year-old girls called the Plastics, who is–go figure–really mean to other girls. The mean girls are intent on dragging other girls down rather than supporting them. If you are a female who can’t name a few mean girls from your adolescent days, you were probably living under a rock. Or maybe you were homeschooled. Or, worst of all, maybe you were a mean girl.

When I first saw this movie, I was forced to consider every group of mean girls that I considered peers. (To be fair, I don’t think I was ever a mean girl, but I know at times I did show some mean girl-type behaviors. I’m not sure you’ll find a woman who made it through adolescence that can honestly claim she never acted like a mean girl, even if she wasn’t one.) I can think of mean girls from kindergarten. I can think of mean girls from middle school, from high school, from college, from grad school.

Even as an adult, I can think of some women I’d classify as mean girls. I’ve learned to distance myself from them, but there will also be groups of women who I think of as mean girls. They are the judgmental women at the gym. They are moms who make other moms feel like bad moms. They are professionals who try to hold back other women in their careers. Unfortunately, they thrive on making other women feel inadequate, insecure, and awkward. It’s not a great thing for the female race. In fact, women who feel the need to sabotage other women in various aspects of life is–in my opinion–one of the reasons women have not achieved greater success relative to men in the workplace and politics.

As I’ve gotten older, I’ve realized that mean girls come in all types of packages. They aren’t always pretty and they aren’t always young. Just like there are wonderful people of all ages, they are challenging people of all ages. (It’s interesting that people tend to think I like all old people because I’m a gerontologist. I don’t like all old people any more than I like all young people, or all white people, or all disabled people.)

I received an email last week from a former student who now works as a nursing home administrator. She asked me to come do an educational presentation at her nursing home. I read the email twice to make sure I understood what she wanted…she wanted me to do a presentation for residents without dementia to get them to be nicer to residents with dementia. The residents without dementia tend to be annoyed and critical of the residents with dementia. They accuse them of faking confusion to get more attention from staff. They are impatient with those with dementia and even mock their behavior.

I’ve had several professional fields discuss this issue with me recently. One works at an adult day services facility. About half of the participants have dementia, whereas the other half do not. The people without dementia like to play cards during the day. The people with dementia sometimes try to play and often get scolded when they can’t follow the rules of the game. The people without dementia have started telling the people with dementia that they can’t play–and not in a very nice way. One participant recently told another (who has Alzheimer’s) that she needed to get her act together if she was going to play cards with the group.

“It’s like a Mean Girls sequel,” the employee told me. “You could call it Elder Mean Girls.”

It’s not that men are immune to this type of behavior. It’s just that the vast majority of individuals in nursing homes, assisted livings, and adult day service settings are female. Also, men who spend time in these settings tend to keep to themselves a bit more.

I recently visited one of my Gerontology majors who is interning at an assisted living. She gave me a tour of the place and pointed at a group of women gathered in a common area drinking coffee.

“That’s the cool club,” she said quietly. “You gotta live here a while and prove yourself before you get an invite. And if you’re not sharp, they don’t want a thing to do with you.”

The cool club. Really? I asked how they treat residents with dementia. The intern told me that the cool club does a lot of eye-rolling around people with dementia. And then they just ignore them until they go away.

“And they asked the activity director if she could not tell the people with dementia about certain activities, like cooking class,” she shared. The cool club doesn’t think people with dementia belong in cooking class. The cool club worries that they will mess up the recipes.

I’d like to think that these people really aren’t mean. I’d like to think it’s a matter of education. If you don’t have a knowledge of dementia, I can understand how it’d be frustrating to live with individuals who have Alzheimer’s or other types of dementia. On some level, there’s probably a need to separate yourself from those individuals–because it’s scary to think you’re like them.

Most of my career centers around two different populations. The first is college students. I’m a college professor. I spend a lot of time with 18 to 23 year olds. Sure, some of them are entitled. Some of them are huge pains. But a lot of them are pretty awesome. The other group I work with is older adults (particularly those with dementia). And, you know, some of them are stubborn and difficult. Some might be set in their ways and inflexible. However, I get to hang out with a lot of really cool older people.

College students and older adults. Over the years, I’ve come to realize they’re really not that different. College students are in a time of transition. They move away from their families. They live in the residence halls. They establish a new sense of identity. New friends. New social network. They have to adjust to assigned roommates and shared living space. They have to eat when the dining center is open.

Older adults are sometimes in a similar time of transition. They may change living situations. Maybe they move to an assisted living or a nursing home. Maybe they downsize and buy a condo that’s part of a retirement community. They adjust to a new living environment. Maybe new roommates. A new routine. And they re-develop their sense of self.

I’d like to say that college students leave their cliques behind. I’d like to say that mean girls are no longer mean girls, but maybe that’s not that case. Maybe mean girls just regroup and form new bully gangs. Maybe sixty years later they will move to nursing homes and the pattern will repeat. I want to think mean girls grow out of being mean girls, but maybe some of them don’t.

When I was younger, I let mean girls make me feel bad about myself. I was too tall. I was too smart. Nerdy. I wore sweatpants and a jersey everyday. I had a mullet which my mother still refers to as “that cute haircut that was short in the front and longer in the back.” I was a teacher’s pet. I liked Bette Midler and listened continuously to the Beaches soundtrack. I looked like a Fraggle from Fraggle Rock. Those are things that middle school and high school mean girls target. Maybe, as I get older, mean girls will target me because I have dementia….because that might make me different from them. We pick on people who are different from us when we don’t make an effort to understand those differences.

I don’t claim to be able to solve the mean girl issue. However, I do think one of the best ways to get people to be nicer to other people is to educate them. It’s hard to be mean to people when you understand where they’re coming from. We tend to be critical of people we don’t understand. We tend to be impatient when we don’t understand what’s causing people’s behavior.

If you have a daughter (or a son) and don’t want them to grow up to be a jerk, make them have conversations with all types of people. (Yeah, I know that sounds like a contradiction to the whole “Don’t talk to strangers” thing.) The more we talk to people who are different, the more we realize that they aren’t that different. The more we realize that people aren’t so different from us inside, the more we are motivated to be accepting.

I don’t know if I can get residents without dementia to be nicer to residents with dementia. My idea is to do a simulation–so they get a small taste of what dementia is like. I have no idea if it will work, but it’s my little contribution to fight mean girls.

On a related note, if you are a tall, smart, nerdy adolescent girl who enjoys wearing sweatpants and looks a bit like a Fraggle, stop listening to mean girls. Don’t apologize for being your teachers’ favorite student. Bette Midler has a fantastic voice, and you are going to be just fine.