Monthly Archives: March 2016

Mean Girls in Dementialand

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

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)

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)

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/