Category Archives: alzheimer’s

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.

 

 

Obnoxious Carpet in Dementialand

alzheimer's, dementia, dementialand, lewy body dementia

I’ve been traveling quite a bit for work. When March is said and done, I will have spent almost half of it in a hotel room.

I enjoy traveling, but right now I’m over the hotel deal. Only one of my five most recent hotel stays has offered a free continental breakfast. My last hotel TV couldn’t pick up the signal for CBS (which wouldn’t be a big deal if it weren’t NCAA Tournament time), and I’m tired of tiny conditioner bottles that don’t have contain enough product to cover my whole head.

My other recurring complaint about hotels is of a totally different sort. It’s about the carpet—typically the carpet in hotel hallways.

Here’s the thing….Your brain has to work to interpret every image you see. If you don’t have dementia, your brain usually does this quite efficiently. If you do have dementia, it’s a different story.

If you live in Dementialand, your brain has to work much harder to interpret the information you gather using your senses, including sight. This is why bold patterned carpet is terrible for people with dementia.

Someone with dementia may not be able to distinguish a patterned carpet as…well…just a patterned carpet. They may be afraid to trip over stripes. They may think shapes are rocks, animals, bushes, babies, you name it… I once knew a gentleman with dementia who refused to walk into his own living room because he thought the bold pattern on the carpet was actually a bunch of dead pigs on the floor. (Not surprisingly, he was a retired famer.) There was a woman who didn’t want to step on a bright patterned carpet because her brain interpreted the image as babies crawling around. Obviously, she didn’t want to step on the babies.

I frequently see people with dementia who are hesitant to walk on surfaces with striking patterns because they are afraid they will fall through or that a different color indicates a raised edge or drop off. When people have this problem in their homes, my best advice is to change the environment. Pull up the carpet or get a throw rug. (I should add that rugs can increase the risk of falls.)

As I travel more, I realize the norm in hotel hallways is to have obnoxiously bright and patterned carpet. Not neutral. Not soft patterns. I think the look they are going for is regal. For the majority of us, I think these carpet patterns are obnoxious and unattractive—but that’s just my personal taste. For the minority (but not small minority) of us with dementia, these carpet patterns create challenges.

I only recently realized how annoying I must be about this hotel carpet deal. Back in November, I attended a conference in Denver with a professor from Southern Illinois University, Julie, who I did not know well. Looking back, I must’ve lamented quite a bit about how dementia-unfriendly the hotel carpet was to poor Julie, whose field of study is not related to dementia in any way. Recently she said she stayed at a hotel with boldly patterned carpet and thought about how much it would bother me. I’m grateful
that Julie and I have somehow become friends despite my obsession with
analyzing hotel carpet and inability to talk about other topics like a normal human being. Sometimes being passionate about your subject matter can make you pretty annoying to hang out with.

Although there is a trend to make society more dementia-friendly due to the number of individuals who are being and will be diagnosed with dementia in the coming years, I can’t pick on hotels. It’d be great if they had something like this in mind when they designed for guests of all ages and abilities, but I know I’m probably being unrealistic to think someone might consider individuals with dementia when choosing a carpet. We have a long way to go. (For now, I continue to rant to my travel colleagues—likely to their annoyance– about this issue, and I once made an awkward attempt to bring up the topic with a hotel manager. I did write an email about six months ago to a major hotel chain and got no response.)

What is more disturbing to me than hotel carpet choices are the carpet choices of facilities that cater specifically to those with dementia. I cannot tell you how many times I have walked into an assisted living facility and been struck by colorfully bold patterned carpet. The reason? When assisted livings were first created, they were intended to have the feel of a luxurious hotel rather than a nursing home. I guess obnoxious carpet equals luxury?

A few years back, a student who graduated from the Gerontology program that I coordinate got a fantastic job managing an assisted living. She wanted me to come see her facility. As soon as I walked in, she rushed up to me.

“I know what you’re gonna say,” she said, “You’re gonna say the carpet sucks.”

It was one of those moments as a professor when you feel a sense of accomplishment because a student actually remembered something you said. And she was right. The carpet did suck. It had boats on it.

You cannot change the dementia brain. What you can change is the environment. When the environment becomes difficult to navigate, or to interpret, we can simplify the environment. Simplifying the environment can start with simplifying the carpet.

Make it a solid or a very soft pattern. A nice neutral is perfect. It should preferably be a different color than the walls. And keep in mind that sometimes people with dementia are hesitant with transitions. For instance, they may stop walking when laminate flooring turns to carpet. Of course, this could be a good or bad thing, depending on the situation.

My office at the university happens to be next to the office of an amazing faculty member in the area of interior design. Before meeting her, I did not realize the importance of designing for individuals with dementia. I now realize that it makes a huge difference in quality of life.

When you can’t change the person, you change the environment to fit the person. And changing the carpet really isn’t all that hard.

Coloring Contests in Dementialand (aka Simple Things in a Complicated Situation)

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

They are having a coloring contest, I am told.

“They’ll sit there pretty much all afternoon,” Kathy says, as I watch her mother and her daughter sit in the dining room at the nursing home with a tub of crayons and a stack of coloring books.

There is something about it that fascinates me. A grandmother and a granddaughter, separated by about 60 years, but somehow in the same place in this moment.

“It used to break my heart,” Kathy tells me. “But now it makes me smile.”

Kathy explains to me that her mom was a successful career woman. She has a master’s degree and was the superintendent of a small school district. In her spare time, she was an avid reader and loved photography.

“She was a real intellectual-type person, but now she’s…this,” Kathy says, gesturing toward the coloring contest. When Kathy says “this,” she’s not saying it in a condescending or negative way. She’s just in awe of the way her mother has changed over the past several years. “This” is different, but maybe not all bad.

Kathy tells me that she always pictured her mom babysitting her daughter. She thought her mom would teach her daughter to love classic literature and encourage her to go to an Ivy League university. She never pictured them coloring together (and sometimes arguing about who gets to use the blue crayon) like peers.  It’s not what Kathy pictured, but it’s what she’s got, and she’s learned to appreciate it in a way that I find admirable.

“My mom never would’ve taken the time to color with my daughter for hours before she had dementia. She’d be too busy doing other things,” Kathy says.

The scene that Kathy never saw coming and used to break her heart is one she knows she will long for in the future. She knows that soon her mom won’t be able to color. She won’t know what to do with a crayon. She won’t understand what a coloring book is. That day is coming. Kathy knows it. And her daughter will lose interest in coloring. Someday soon she’ll see it as childish and move on to other things. Kathy knows she’ll think about the coloring contests and wish she could go back in time to watch them contently coloring together again.

It’s like they’re crossing, she tells me. Her mom is going backward. Her daughter is going forward. But right now…right now they seem to be in the same place. I can’t help but think it’s beautiful and sad all at once. Kathy has found a way to focus on the beautiful. She knows there’s some sad in the future, but right now there’s a coloring contest.

Every once in a while, Kathy’s daughter walks up with a page torn out of a coloring book to show Kathy. She sometimes asks who is winning the coloring contest. When she asks, Kathy’s mom stops coloring and holds up her project for Kathy to review.

“It’s a tie, ” Kathy says. I asked if it’s always a tie. Kathy tells me that it usually is…because once she pronounced her daughter the winner and her mother started to cry.

Life with dementia can be pretty complicated. As we watch the coloring contest, Kathy tells me about the challenges of getting her mom the care she needs, the financial struggles of their family, and how she’s not getting along with her siblings. She starts to talk about the problems she’s having with her husband because she spends most of her free time at the nursing home, but then waves her hand and shakes her head. Her voice trails off for a moment.

“This dementia thing really sucks, but I brought in a new box of 48 Crayolas this morning, and it made both of them so happy,” she says.

Kathy knows that crayons won’t always make her mother and daughter smile…but today they will. And that’s enough.

And you know what you do when the loser of the coloring contest cries? You always say it’s a tie.

Sometimes dementia makes life really complicated, but sometimes things are pretty simple.

 

 

 

What I Don’t Get About Dementialand (And Hopefully Never Will)

alzheimer's, caregiver, dementia, dementialand

You can only know so much about Africa without visiting. You can read books on Africa. You can look at pictures of Africa. You can spend time with people from Africa…but I don’t think you can really gain a full understanding of Africa without visiting.

That’s where I’m at with Dementialand. I know a lot about dementia. I’m grateful that I am sometimes given opportunities to use this knowledge to educate communities, professional caregivers, family caregivers, and college students about dementia. Sometimes, however, I am put in my place. I’ve never been to Dementialand, and every once in a while someone reminds me of this.

I was talking with a woman with dementia a few months ago when she got hung up on a word. I waited patiently while she tried to pluck it out of the air. She never found the word, and her gaze settled on me.

“You look at me all smiley when I get frustrated with myself,” she said angrily. “You don’t know what this is like. Stop acting like you get it.”

Fair point.

I don’t know what it’s like to have dementia.

If you have dementia, please realize I understand that my education and experience can only take me so far. I don’t understand how you feel. I try to understand, but I can’t fully get there–because I don’t have dementia. Please also realize that I’m trying my best with the skills and knowledge that I have. I’m gonna screw up. I’m gonna say the wrong thing. I’m gonna frustrate you because I don’t know how to help you. (And, to be honest, you’re probably gonna frustrate me, too. That’s what dementia does.)

But I promise that I won’t stop listening and learning. Toward that end, I make an effort to read books, poems, and blogs written by people with dementia.

I’ve mentioned Melanie Wagner in my blog before. She has early-onset Alzheimer’s and continues to write about her experiences at https://mwagner21.wordpress.com/. She’s amazing to share her journey, and yet I don’t think she has any idea that she is remarkable. Her blog will teach you more about Alzheimer’s than my blog ever could.

I spend hours reading, talking, teaching, and thinking about dementia. I spent the last four nights at a hotel where I was annoyed by the carpet design because it would not be appropriate for someone with dementia. It’s impossible for me to go to a basketball game or a bar without thinking about how overwhelming the environment would be for someone who was affected by Alzheimer’s. Despite my passion and knowledge, I could never write anything as insightful as Melanie’s work. She understands dementia in a way that I don’t, and–if I’m being honest–I hope I never do.

Today I am sharing one of her poems.

BREAD CRUMBS

Hear the words
Listen to the quiet undertones
The crumbs, the soft whispers

The off the cuff remarks

Please don’t judge, accuse, negative or condescending

Listen

Each word, the context, the emotion

They mean something

Follow the crumbs

Pick them up

Don’t wait to get to the end

When it’s too late

Don’t be the one who says, thinks, or wonders – the what ifs, I should have seen, known or done something, helped!

Hear my voice, my pain, my heartache

Follow my path, catch me, hold me, help me

Listen

Read between the lines

Look for the signs, the cliff

Along the trail are clues

Reactions, implosions, doubt

Loss of self worth, meaning, purpose

No one knows how many crumbs will fall

When they run out

When they stop

Listen

Help

Learn and understand

Empathy not sympathy

The bricks have all ready fallen

The crumbs are being placed

Time does end

Light does fade

Tomorrow is never promised
~ Written by Melanie Wagner ~

Original source: https://mwagner21.wordpress.com/2016/01/21/bread-crumbs/

Solvable and Unsolvable Problems in Dementialand and Life

alzheimer's, dementia

If I have a public speaking engagement that ends at 8 pm, my husband Bill knows to expect that I’ll leave the building at 9:30. In the past, he’s ridden along to help with the set-up and technology. He’s usually sitting on a table in the back of the room patiently when I chat with people (mostly caregivers) after my presentation.

When I finish speaking to the group, I usually say I will hang out for a few minutes in case anyone has questions or wants to chat. It’s typical for a several people to approach me. They are almost always too kind.

Recently, a caregiver said my presentation made him think I had to been looking in his windows for the past few months. Strangely, it was one of the nicest compliments I’ve ever received. (Even better than the woman who once came up to me and said, “When I first walked in, I saw the way you looked and thought you wouldn’t know anything about Alzheimer’s. But it turns out that you do.”)

After the compliment comes the question. It’s presented in a form of a story–sometimes a very long story–about their loved one with dementia. They tell me what’s going on, and then there’s a pause. At this pause, I am supposed to jump in with a solution.

Sometimes I present a few potential solutions, but they tell me they’ve already tried those things. Or I give them some options, and they tell me why those options aren’t possibilities. I stand there, wracking my brain to come up with a solution. I feel like a failure when I have nothing to offer. After all, I am a supposed “expert.”. I am disappointed in myself when the best I have is “Gosh. I don’t know.”

My husband, Bill, often silently observes these situations as he waits for me. When we leave, he can tell I’m second-guessing the advice I’ve given people–wishing I could have come up with something better.

Last year, Bill listened to me chat with caregivers about their specific challenges and then said to me, “You know, those people don’t always want you to solve their problems. They just want you to acknowledge it’s hard and they’re doing everything they can.”

As hard as it sometimes is to admit your spouse is right, my spouse was right. Sometimes people just want an “expert” (please note the quotation marks) to acknowledge that they are dealing with a difficult situation. Maybe, just maybe, it’s not my job to find a solution to every problem. Maybe there is not even a solution to find.

In Dementialand, as in life, there are problems that can be solved. A woman once told me that her mom, who had dementia, had stopped using the bathroom at home because she couldn’t find it. The woman was able to find a solution (at least temporarily). She made signs to put all over the house with large arrows to indicate where her mom would find the nearest restroom. It was so simple that she doubted it would work, but it did work. In fact, she eventually went to Office Depot to have professional-looking color signs printed because she decided the ones she made on construction paper were tacky.

Then there are challenges that are not solvable. We must cope with these challenges because there are no solutions. I am often asked how to get someone with dementia to stop asking the same questions over and over again. (It’s somewhat ironic that a question I am asked over and over again is to how stop people from asking questions over and over again.) And I don’t have an answer. All I can do is acknowledge that it is frustrating for even the most patient caregiver to have to answer the same question repeatedly. The best advice I can give you is to take a deep breath and attempt to answer that question in the exact same tone of voice you did five minutes ago.

It’s great when a problem you encounter in life is solvable and the solution is quick, easy, and cheap. Last month, my car wouldn’t start. It was a bit of a crisis because my husband was out of town, so I was stuck with no wheels for a day or so. When we realized the problem was a dead battery and got a new one, the problem was solved. Life was back to normal.

There are other problems in life that aren’t so solvable. For instance, our rat terrier mix, Gus-Gus, isn’t always great with small kids. He rarely meets an adult that he doesn’t want to French kiss, but kids aren’t his jam. After a few years of trying to solve this problem, we realized it’s something we just need to cope with it. We can’t seem to solve this problem without putting kids at risk (and I’m not about to ask to use my friends’ kids as training tools), so Gus-Gus gets a ticket to the bedroom with the door shut when kids visit. We cope.

If you think about it, a lot of problems demand coping skills. A man who is annoyed that his wife who has Alzheimer’s paces around the house all day? There may be no solution for her pacing. He may need to acknowledge it frustrates him and learn to cope with it. A woman who makes a clicking noise with her tongue obsessively all day? Her caregivers may have to find a way to block it out. A man who can’t remember his kids’ names? That’s not a solvable problem. It’s part of the progression of dementia. You gotta cope with it.

We can’t change the course of diseases like Alzheimer’s. As of 2016, Alzheimer’s itself is not solvable. Remember the prayer that asks God for the serenity to accept the things we cannot change? If God made a list of those “things we cannot change,” I would think He might put dementia near the top.

As for those people who want me to give them advice on the challenging aspects of dementia, I’ve found that saying, “Wow…that’s a tough one. It must be pretty frustrating for you” goes a long way.

Sometimes I have to acknowledge that I can’t solve everyone’s problems. Heck…a lot of times I can’t even solve my own. Sometimes that’s because I lack the knowledge, experience, and insight. However, there are other times I can’t solve problems because there really aren’t solutions. When that’s the case, it’s about taking a deep breath and weathering the journey.

Happy Holidays from Dementialand (And What Clark Griswold Reminded Me About the Holiday Season)

alzheimer's, caregiving, dementia

Welcome to Dementialand is on hiatus until 2016.

In the meantime, I wish you tremendous holiday season. I’m not going to battle about language here. I accept well-wishes in any form. I’m not Jewish, but I’d rather you tell me Happy Hanukah with a warm smile than give me a sharp elbow or a middle finger during holiday shopping in the toy aisle. (On a related note, I really want to try matzo.)

Don’t forget to do something you enjoy over the next few weeks. Don’t forget to be nice to other people. Don’t forget to buy a couple of generic gifts for the awkward moment when someone presents you with a present…and you didn’t think to buy them anything.

And don’t forget that the holidays are not a competition. It is okay if your sugar cookies look like they were decorated by fourth graders. Own it. And, if you can’t cook, remember that someone has to volunteer to bring the red Solo cups to holiday gatherings. Show up with some adorable paper plates. Make it your thing. And if you don’t do that Elf on a Shelf deal, bless you. I still don’t understand it.

If you visit a nursing home this holiday season, take a few minutes to say hi to residents who might not have visitors. If it’s a tough visit, cry on the way home, not at the nursing home. If you have a loved one who is nearing the end of their life, don’t worry about making this the best holiday season ever. It probably won’t be, but try to smile and laugh as much as possible anyway. Don’t feel obligated to make it Lifetime movie sentimental. Just do the best you can. Trust me that it’s enough.

And if you’ve ever made a positive comment about my blog, if you’ve subscribed, if you’ve ever liked it on Facebook or shared it, or even if I’ve written something that you relate to and you’ve nodded knowingly, THANK YOU. From the bottom of my heart, THANK YOU. Writing this blog has been a journey for me, and I’m grateful for everyone who has been a part of that journey. You mean the world to me.

To those of you who have made negative comments or sent me critical emails, I’m gonna be the bigger person here and thank you as well. A part of this journey for me has been developing thicker skin. I’m getting there. Now I only spend one day obsessing about your critical (and sometimes mean) comments. If I think they are gonna keep me up at night, I take a Bendryl before I hit the hay. I used to focus on them for about a week. We are all works in progress, right?

Oh, and one more thing…When you catch your cat on the counter licking the turkey or your relatives arguing about Starbucks red cups/Donald Trump/gun control/gay marriage, remember that holiday horrors often make the best memories. I would not have watched National Lampoon’s Christmas Vacation twice in the last week if everything had gone right for poor Clark Griswold. I bet Clark and Cousin Eddie still laugh about that cat electrocuting itself by chewing on those Christmas lights.

See you in 2016.

Reflections on Mass Shootings, Good People of the World, and Dementialand

aging, alzheimer's, dementia

There was another mass shooting last Wednesday. Well, actually two mass shootings. One in Georgia and another in California.

I wish I could tell you that I was irrate when I first heard about the shootings. I wish I could tell you that I was sick to my stomach when I saw the news. The truth is…I wasn’t.

Maybe I’m a horrible and cold person. Perhaps I don’t care about other people–but I don’t think that’s the case. I think there’s another reason I had virtually no reaction to the shootings.

It’s a tolerance effect.

There are a lot of shootings in America. You can argue about why this is happening. You can fight about gun control. Sometimes I feel like there are so many of us who disagree on what we should do that nothing will change, but I’m not here to discuss any of that.

What we can agree on is that this happens too much. And that is exactly the reason that I didn’t have much of an emotional response.

A mass shooting? Just another day in America.

A couple weeks ago I had to go through an active shooter training at the university where I am faculty member. I guess it’s just something you do if you work at a university. To be honest, I didn’t think much of it.

I feel myself getting less and less (rather than more and more) appalled at each mass shooting. I’m ashamed to tell you that. Each and every shooting is absolutely despicable, disgusting, and appalling. It’s horrifying to me that I seem to be, in a sense, getting used to these shootings, even those that occur on college campuses similar to the one on which I spend quite a bit of my life.

On Wednesday night, I started thinking about how bothered I was that I wasn’t more upset about the shootings. And that’s when I got sad. I got sad that I seem to have hit a level of “acceptance” about mass violence.

I was upset at myself for not being more sensitive. I was upset because the world isn’t the place I want it to be. I was upset because, if I’m being honest, I don’t see things getting better any time soon.

Sometimes the most positive moments come just when you need them. Thursday was a pretty good day.

I took five college students with me to hang out at an adult day center for people with dementia and intellectual disabilities.

Sure, I work with a few college students who annoy me. I can’t lie. Some of them are entitled. Some of them aren’t always honest with me. And some of them are only out for themselves.

But a lot of them are pretty awesome. And these five college students? They are the reason I work as a college professor. They come with me to the adult day center because they want to–not because it will be a line on their resume (although it should be a line on their resume). Maybe they are going to ask me to write a letter of recommendation for them someday so they want to impress me, but that’s not why they come either. They come because they are good people and because they honestly, genuinely think it’s fun to spend time with those who have dementia and cognitive challenges.

Let me tell you about my students. One is a Psychology and Gerontology major who is looking for an internship with hospice in the spring. I was at a conference in November during the time we normally visit this group, and she led the activity–and thanked me for trusting her enough to give her the opportunity. Another (a rare guy in the Gerontology major) wants to someday administrate a nursing home. He happened to be wearing a sharp business suit because he had a presentation for a class later in the day. Our friends with dementia loved the suit. Another is a Social Work major with a Gerontology minor who might want to someday be a school counselor. She’s having trouble deciding what to do with her life because she loves everyone and everything. (I’ve told her several times that this is the best problem to have when it comes to career decision-making.)

I had two late additions to the group. I met one a couple of months ago because she works for university relations and wrote a story about our program for the university website. She has a grandpa with Alzheimer’s and was interested in the community service that we did. She happened to randomly email me the night before and I invited her to tag along. She brought a friend, who turned out to be absolutely delightful.

When we arrived, I stepped in to another room to say hi to a staff member. In about 30 seconds, I came back into the main area to find my college students had all struck up conversations with the participants. It was loud. Lots of people were talking about lots of stuff. Some of it made sense. Some of it didn’t. If I were a person who got a tear in my eye in moments of joy, I would’ve had a tear in my eye.

Here is what is fantastic…I don’t have to coach them to spread out and introduce themselves. They don’t clump together in a corner like kids at a middle school dance. They just start talking to people like they’ve known them for years. If people don’t respond verbally, they don’t care. They continue to interact with them. They roll with the punches.

So we sat around for 45 minutes about talked…about chinchillas and how they take dust baths (yes, that’s a thing), about what a pain it is when your roommate beats you to the bathroom in the morning (something that is common for both college students and adults with intellectual disabilities who live in group homes), about whether India is a state (a guy with dementia insisted it was and my students just went with it).

It wasn’t an earth-shattering afternoon by any stretch of the imagination. It was just a bunch of people in different stages of life with different abilities hanging out, talking, and doing a lot of laughing. Now that I think about it…and I really didn’t think about it until right now…we even had some ethnic and religious diversity. It reminded me that this world can be a pretty cool place.

That day something occurred to me. There are lots of people making a positive difference in our world. Most of us make a difference in small increments…a little bit at a time…just by being who we are. Think about it–you will likely make a positive difference to someone today. It will likely be a small thing, or maybe a bunch of small things, rather than a grand gesture. That’s how life works. It takes a lot of dedication and time (and some chance) to make the evening news as someone who makes the world a better place.

It takes a lot less dedication and time to make the evening news as someone who makes the world a more negative and scary place. It takes less than five minutes with an assault rifle.

 

Whack-A-Mole and Tongues in Dementialand

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A friend of mine, who is engaged to be married, once referred to conversations with her future mother-in-law as games of Whack-A-Mole. I remember being a huge Whack-A-Mole fan when I’d visit Chuck E. Cheese as a kid. Little toy moles would pop up in random patterns and I’d have to respond by hitting them with a mallot. My friend considered her future mother-in-law’s questions and topics of conversation to be so random and unexpected that they were like those little moles popping up.

I could use the same analogy for some of my friends with dementia. Their questions, comments, and subjects of conversation aren’t always predictable. As someone who gets sick of bland and boring small talk (“Hi, how are you?” “Fine, how are you?” “Good.”), I’ll take the refreshing Whack-A-Mole conversation anytime.

I was walking out of a nursing home last week and passed an older man who appeared to be sleeping in his wheelchair. When I walked by, he opened his eyes.

Without pause, he said to me, “I know a lot about tongues.” Yep. It was a Whack-A-Mole conversation, and I was all in.

“I’ve always wanted to meet a tongue expert,” I said without missing a beat.

And he was more than willing to teach me about tongues. First, he told me to open my mouth and show him my tongue. I obliged.

“Yes, that is a good one,” he told me. I was strangely proud. He continued talking about tongues. My tongue. His tongue. Tongues in general.

Here is what I learned about the tongue:

You might think that the tongue is a single muscle (I did), but it’s actually made up of eight muscles. In fact, you can think of it as a “little bag of muscles.” If people have bad breath, it is often because of bacteria on their tongue. Taste buds aren’t just on your tongue. They are also on the roof of your mouth and other places “around in there.” The average tongue is 10 centimeters long (but this guy said he had measured his a few years ago and it wasn’t quite that long). It’s hard to get an accurate measure of a tongue because of the gag reflex. A human tongue print is as unique as a fingerprint. Cats have special tongues that are rough so that they can be used for cleaning, but their tongues also pick up a lot of debris which is why they get hairballs. Oh, and people can get tongue cancer. He knows several men–but no women–who have had tongue cancer.

After the tongue lecture, I asked him, “How do you know so much about tongues?”

He pointed to his forehead, and his eyes lit up.

“Encyclopedia!” he exclaimed. And then he used his feet to turn his wheelchair around and headed off in the opposite direction.

I was left standing there watching him as he slowly moved down the hallway.

When I got home that night, I got on my laptop and Googled “interesting facts about tongues.” I realized that everything he told me about tongues was, in fact, credible. I hadn’t doubted him. It’s just that I’d given so little thought to tongues in the past.

I read an article on gratefulness while I was waiting in the doctor’s office a few weeks back. The article suggested identifying at least one “highlight” of the day when you go to bed each night. This is something that would usually make me roll my eyes, but I’ve been doing it. No matter how good, bad, or neutral my day was, I force myself to think about one positive thing that happened as I get ready for bed.

On this particular night, I thought to myself, I learned a lot about tongues today.

Whack-A-Mole.

 

 

 

 

History Lessons from Dementialand (Or How I Learned to Love History)

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History wasn’t my favorite class in school. In fact, that’s a grand understatement. History was probably my least favorite class in school. (I’m kind of lying. Chemistry was actually my least favorite subject but I don’t often mention this because my dad was a chemical engineer and my apathy toward chemistry repeatedly breaks his heart.)

My feelings about chemistry aside, I was not a fan of history. I remember one of my high school history teachers. He had shaggy hair and wore tie-dyed t-shirts. He tried to make it interesting. I’m sure he did make it interesting for other people. Somehow, he didn’t make it interesting for me. That’s not a complaint about him. I feel like I probably owe the guy an apology. I never even tried to take an interest in what he was talking about.

College wasn’t any better. I made a decision to dislike every history class I had to take before the semester started. It didn’t help that I was dating a history major at the time. I didn’t understand how he could find this stuff interesting. He didn’t understand how I couldn’t.

When I finished college, I thought I was done learning about history. Little did I know that I was just getting started.

My friends with dementia have taught me more about history than I ever learned in school. That’s not a knock on my education. It’s a comment on my previous disengagement in the subject matter and a nod toward the opportunities I’ve had to learn from people who were around decades before I was. And some of them are pretty damn good teachers.

A man with Alzheimer’s told me that he was in a car with a group of guys who cheered when they heard on the radio that John F. Kennedy was shot. I asked him why they cheered and he shrugged. He said he guessed they didn’t like Kennedy. And that they were teenagers. He told me that teenagers are teenagers.

A women in her late 80’s who suffered from dementia told about what it was like to go through a divorce when divorce was stigmatized. Interestingly, she was the one who wanted the divorce, even though she knew it would leave her in poverty to raise a child. Her ex-husband found a new wife within a few months. It wasn’t so easy for her. She told me that men practically sprinted away when they found out she was divorced with a young child. She called it a double standard. She finally did get remarried…in her 60’s.

I sat at a nursing home once while a man told me about having tinsel on his family’s Christmas tree as a child. It was a product of the Great Depression, he said. People wanted decorations that were shiny to spruce up a Christmas tree with few presents underneath. Tinsel was cheap but somehow fancy. It made people feel a little richer when they were poor.

It occurred to me recently that this is history. If you know anything about dementia, you know that it is typical for long-term memory to outlast short-term memory. It is common for someone to have no idea what they had for breakfast but to be able to recall rich details of something that happened 40 years ago.

I’ve heard people say that the preservation of long-term memory is a gift—that it gives people with dementia time to pass on their stories before they disappear. I once had a woman with Alzheimer’s tell me that she wasn’t forgetting her past. She was passing it on. Unfortunately, not everyone has someone to pass their story on to before it is forgotten. Many experiences don’t seem notable enough to make the history textbooks, but that doesn’t mean they lack value.

Everyone has a story. Their story is about them, of course, but it’s also about the context in which they lived. It’s about when they lived. It’s about where they lived. It’s tied in with the headlines of the era but (to me) more interesting. That’s what I was missing about history when I was younger.

I meet many people who can no longer tell me their stories. I used to say hi to a woman at a nursing home when I’d visit to do staff education. She was slumped over in a wheelchair and could not speak. She couldn’t tell me her story. After she passed away, I learned more about her. She was a white teacher at a predominantly black high school in a rough part of Chicago. You could find her students hanging out at her house in the evenings, doing homework and eating cookies she had baked. Now there’s a story (and one you could probably make into a made-for-TV movie).

I like to joke that children frighten and confuse gerontologists like me. Contrary to popular belief, I like kids. They can be fun to hang out with (for a while). They say some hilarious stuff. And, similar to those with dementia, I often find myself enjoying their brutal honesty.

Kids, however, don’t have very interesting stories. It’s not their fault, of course. They just haven’t been here long enough to develop their stories. They also don’t get to make a lot of their own decisions, which limits the twists and turns their stories can take. Give me an 80 year old any day of the week.

When I was a kid, I read “Choose Your Own Adventure” books. You’d get the end of a chapter and have a message like, “If you want to go in the house and see what’s causing the noise, turn to page 33. If you want to call the police, turn to page 43.” You come to a crossroads, and you have to make the call.

How many times has an 80-year-old had to make a life-changing decision, whether they realized at the time it would change their life or not? More times than a kid…of course….which is why I’m a gerontologist and not a child psychologist. Older adults have life histories rooted in contextual details that I can’t fully understand—the Great Depression, the Vietnam War, the racial tension of the 60’s. The choices they’ve made are linked to the times and places they’ve experienced. People are not independent of historical context…because people are history.

I don’t know if it’s better to lose your short-term memory before your long-term memory or vice-versa. And it’s irrelevant to overanalyze this because we aren’t given a choice in what we lose when dementia strikes. A compromised short-term memory certainly impacts your daily functioning, and it’s one of the main reasons we have to limit the independence of those who have dementia. Having problems with your short-term memory is tough, and that’s an understatement.

However, I sometimes feel fortunate that it’s the long-term memory that sticks around when the short-term memory fails. To be honest, I am more interested in a person’s stories about what happened 50 years ago than their stories what happened this morning.

I guess I don’t hate history after all. I just didn’t really know what history was when I was in school.

The Cubs Always Win in Dementialand

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What I’m about to say is even more shocking if you consider I am a St. Louis Native and forever obligated to root for the Cardinals. In fact, one of my vivid memories about the day my Grandma passed away was that we had the Cardinals game on in her hospital room. We knew she was leaving us, but my family didn’t want to miss the game. (And I guarantee you that my Grandma would have thought it was weird if we had turned the game off just because she was in the final stages of her life.)

Here goes…

I must tell you that I am happy that the Chicago Cubs are in the playoffs. Do not tell my family this. I may not be welcome at family Christmas anymore. At the very least, someone might spit in my green bean casserole. I do hope the Cardinals beat them in the National League Division Series, of course, but I’m glad the Cubs made it this far.

I have a thing about rooting for the underdog. It’s most prominent during college basketball’s March Madness when I sit in front of three TVs at once in our living room (thanks to my husband for the NCAA Tournament TV arrangement) hoping to see a 16-seed beat a 1-seed, but I do it with other sports as well. From that perspective, it’s not all bad to see the Cubs in the play-offs.

There’s something else as well, though. There’s another reason I smile because the Cubs have the 3rd best reason in baseball in 2015. It’s because of a guy I know whose name is Paul.

Paul has always been a Cubs fan, and he’s been through losing season after losing season, never allowing his loyalty to waver. Something odd happened a few years that made Paul’s family realize that perhaps Paul was having some difficulties.

They’d walk into the family room and see Paul watching a Cubs game on TV, just like he had done for most of his life. They would ask who was winning.

“Cubs,” he would respond. However, they’d glance at the TV and realize that the Cubs weren’t winning. It was the first dementia symptom that they noticed. They told friends that they were concerned about Paul–because he thought the Cubs were winning when they weren’t. Friends shrugged them off. Paul probably just wasn’t paying attention. Or maybe it was something with his eyesight. His wife, however, knew there was a problem. She was frustrated when their family doctor wouldn’t listen.

About six months later, she became more concerned. She would walk into the family room when Paul was watching a game and ask who was winning. He’d tell her the Cubs were winning, but she’d glance at the TV and realize that not only were the Cubs not winning, they weren’t even playing. Maybe it was the Cardinals and the Pirates. Or the Phillies and the Mets. But not the Cubs. At this point, Paul was showing other symptoms. He had gotten lost driving in their small town. He seemed more irritable and got his feelings hurt more easily. Furthermore, he no longer wanted to spend time with friends. He preferred to sit home alone and isolated himself.

After he was diagnosed with Alzheimer’s, he continued to spend a lot of time in front of the TV watching sports. When his family asked who was winning, he would tell them that the Cubs were…except now it wasn’t always baseball. Maybe it was hockey, basketball, or football. He once insisted that the Cubs were winning a 4×100 relay.

His wife told me that this used to break her heart. Paul had been a loyal and knowledgeable sports fan. Now he couldn’t even tell if the Cubs were winning, or playing, or even if he was watching baseball. Over time, she developed a new perspective. She stopped correcting him. In fact, she would smile and act pleased when the Cubs were winning. Sometimes she went as far as to cheer for them, even when they weren’t playing.

She told me, “The Cubs don’t win a lot in the real world. He deserves this.”

I guess the Cubs always win in Dementialand. And last night Dementialand wasn’t all that different from the world most of us live in. The Cubs beat the Cardinals, 8 to 6.