Category Archives: dementialand

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/

Whack-A-Mole and Tongues in Dementialand

alzheimer's, dementia, dementialand,

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.

 

 

 

 

Policing Dementialand (aka Thoughts on Dementia-Friendly Communities)

alzheimer's, dementia, dementialand, ,

We tend to judge an occupation by its worst members.

We meet a few doctors with poor bedside manner, and we think doctors don’t genuinely care about their patients. We have a few arrogant professors in college, so we say all professors are arrogant. We perceive one lawyer as sleazy, so they all are.

It’s a cognitive shortcut. It’s easier for our brains to put all people in an occupation into one category than evaluate them as individuals. That’s the basis of a stereotype.

There’s a problem with this, of course. The problem is that not all doctors are the same. Not all professors are the same, and not all lawyers are the same. If you see the pattern here, feel free to insert your own occupation. I bet you will agree.

It doesn’t matter what profession you are talking about…some people are better at their jobs. Some people are more ethical in their work. Some people make more mistakes. And some people just don’t pull their weight.

An ongoing conversation in our society that has been of particular interest to me relates to police officers. I’ve heard a lot of discourse in the past 15 months about cops. Obviously, much of it portrays a negative perception of cops in our country. However, I’ve also noticed a strong rebuttal and a show of appreciation for what cops do.

I’m not an expert in criminal justice, but here’s what I do know. I know that cops make mistakes, just like people in other professions make mistakes. (If you think you’ve never made a mistake in your job, you’re mistaken. Have I made mistakes in my job? Absolutely.) Because of the nature of police work, mistakes can be incredibly costly. I’m not willing to discuss issues like racial bias here, but I am willing to say that some cops are great at their jobs and others are not as great at their jobs. And that is true for every profession.

I am fortunate to have three police officers who are close to my heart. My father-in-law, Bill, has served his community for about 30 years. My friends, Jen and Shannon, are newer to the profession. All three of them care about people. All three of them are in the field because they want to make a positive difference in the community. All three of them work shifts that make them miss events with family and friends–and rarely complain. It’s an understatement to say that I admire them. In fact, I got called for jury duty and my statement of admiration for them when asked if I had any biases toward cops was probably why I didn’t get picked for the jury.

Jen sent me a late night text this summer that said, “It’s hard policing dementialand,” and we both knew that I would soon write a blog post called “Policing Dementialand.” I’ve given thought to interactions between cops and older individuals, particularly those with dementia, in the past, but Jen has given me a new perspective.

I’m proud to say that I was there to celebrate when she finished the police academy. I was proud of her when she got a job offer. I was proud of her when she passed her training period as an officer. I was even proud of her (and also bummed for her) when she jumped a fence following a K9 officer who was tracking a suspect and broke a bone in her shoulder.

However, I’m not sure I’ve ever been more proud of her than when she told me that she found a woman with dementia who was wandering and used dementia-friendly communication techniques to figure out where she lived–even though the woman didn’t know her address. She’s also been called to the house of a woman with Alzheimer’s who thought someone had been breaking in and stealing her belongings. Jen doesn’t know the term “validation therapy” (and she doesn’t need to) but that’s what she used to deal with the situation. She even thought to remove the medication of the woman’s deceased husband from the home so she wouldn’t accidentally take it. She’s also had to negotiate drivers who likely had dementia, which is no easy task. I’ve started calling her the “dementia whisperer.”

She says it’s because she reads “this blog by this professor she knows,” and maybe that’s part of it. To be fair, she’s also been forced to listen to me ramble on and on about Alzheimer’s and other dementias. Yet, I think it’s more than that. She wants to help people and strives to be good at her job. I’m happy if my blog (and my endless talk about dementia) has helped in a small way, but she has sought out that knowledge and has been able to apply it on the fly when situations arise. If we give more cops education on dementia, I think more of them can be “dementia whisperers” like Jen.

I hear many stories of how police officers have not made sound decisions in regards to individuals with dementia. I want to make it clear that in many of these situations the cops are well-intentioned. They just aren’t educated on how to work with people who have dementia.

I hear a lot of talk about making communities more “dementia-friendly.” This means that we need to provide basic dementia education to those who serve the community. They don’t need to understand genetic components, the parts of the brain, or the (lack of) effectiveness of available drugs. They do need to understand how to approach and communicate with people who might have dementia. They need to know how to avoid making individuals with dementia agitated and anxious.

I recently did a series of trainings on dementia for area bus drivers. Many of these bus drivers transport people with dementia on a daily basis, and yet don’t have a working knowledge of dementia skills. They are asked to help people get on and off the bus, as well as take responsibility for the safety of those on the bus. Yet, we have not given them the knowledge to do this effectively. (To give you an idea of their level of knowledge, a bus driver came up to me after a training to ask if Alzheimer’s was contagious. It amazed me–and in a way impressed me–to think a guy who wasn’t sure if Alzheimer’s was contagious worked with people with Alzheimer’s regularly…or maybe he needed the paycheck that badly.)

I know a lot about dementia. I read a lot about it. I talk a lot about it. However, I only spend about three hours a week on average with people who have dementia. There are people who spend more hours a week with those who have dementia and have much less education. And that’s not a criticism of those people. We can’t expect people to have skills and knowledge we don’t teach them. That’s not fair to them. My goal is to educate our communities so they will be ready for the challenges associated with the increasing number of individuals diagnosed with Alzheimer’s and other types of dementia. We aren’t there.

 

Note: The Alzheimer’s Association has put together what I would consider “Cliff Notes” for law enforcement officers working with individuals who have dementia. Check it out:

http://www.alz.org/national/documents/safereturn_lawenforcement.pdf

And if you are within reasonable driving distance, you could probably convince me to come do a training.

 

 

 

 

 

 

Aggressive Behavior in Dementialand

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

My cell phone rings in the morning as I’m blowdrying my hair before work. I look at the number, and I’m not sure who’s calling. I’m tempted to assume it’s a wrong number and not answer. I’m running late. I figure if it’s someone I know, they can leave a voicemail. However, something tells me to answer.

It’s a friend of a friend that I’ve met with before. I’ll call her Laura. Her and her husband, Al, are in their early 70’s. He has Alzheimer’s. He was diagnosed about five years ago. The last time I talked to Laura, Al was able to work at a part-time job and drive.

When I answer the phone, Laura tells me that she doesn’t know what to do. Al has been declining quickly. He needs help using the restroom. He forgets to eat. The other day he didn’t even know how to open a door.

But that’s not why Laura called. She called because he didn’t sleep last night. He wandered around the house, disorientated and muttering to himself. At about 3 am, she tried to get him to come to bed. It was dark and he didn’t recognize her. He pushed her down on the couch and started to put pressure on her neck, as if he were trying to choke her. Laura mentions several times that he didn’t leave any marks on her neck. I’m not sure if she’s trying to reassure me or herself.

Then he shuffled off and went out onto the deck. Laura spent the next couple of hours watching him from the window. She was worried he’d wander off and get lost, but she was also scared to try to convince him to come inside.

“I don’t know what to think,” Laura tells me. “He’s a gentle guy and we’ve always had a great marriage. He’s never been abusive.”

I explain that this has nothing to do with whether or not he’s a kind and gentle person. It has nothing to do with their marriage. It has everything to do with Alzheimer’s.

I tell her that he’s scared. The rest of the world may perceive Al as being in his own home–a familiar environment in which he has resided for decades–with his wife of almost 50 years. However, Al’s behavior tells me that he wasn’t in a familiar environment with a familiar person. He was in a scary place where he was approached by someone he didn’t recognize.

The term aggression in relation to people with dementia makes me uncomfortable. When we say someone is aggressive, we generally mean that they are unprovoked (rather than defending themselves) and intending to use force to hurt someone. However, I would argue that aggression among those with dementia is almost always a result of fear.

The way that someone with dementia perceives the world around them often results in a feeling of being threatened. What does anyone do when they are threatened? They lash out. It’s a natural reaction. When people with dementia show aggressive behaviors, these behaviors often make sense if we consider how they might be perceiving the world around them.

I ask Laura a few more questions. I learn that Al used to be a hunter, and Laura came home recently to find that he pulled out a few guns and put them on the kitchen table. He explained to her that someone had been messing around in the garage, so he had to be prepared. It scared Laura enough that she asked her son to come and get Al’s guns.

“I’m pretty sure that no one was in the garage,” she tells me. “But I guess you never know.”

On another day, he was convinced that “the militia” was after him. He had a bunch of knives out on the counter. He had also kicked the dog a few times, which was something the “old Al” would never have done. It horrified Laura.

Laura keeps telling me that she doesn’t think Al would ever hurt her. (She’s more worried about the dog, she says.) I have to think that if she really believed this she would not have called me before 7 am. She’s scared.

I tell her that she needs to get Al a medical check up. I am particularly concerned that he may have a urinary tract infection, which is often linked to aggressive behavior in those with dementia. She agrees he needs to go to the doctor, but she has no idea how to get him in the car. She doesn’t think he’ll go willingly.

Then I ask her if she’s checking into long term care options. There is a pause. The kind of pause where you wonder if the call has been dropped. Or if someone has hung up on you.

Finally, Laura tells me that she can’t do it. She can’t even think about Al living in a nursing home. He’s been a good husband and she will take care of him at home. She says he deserves that, and she promised their kids that he’d stay at home. She insists she’s doing okay. I point out that she wouldn’t have called me if she was doing okay. Dementia caregivers don’t call me to say they are doing fine.

I tell Laura that Alzheimer’s is a cruel beast, and sometimes it forces us to make choices that we don’t want to make. Most people are not really excited about the idea of someone that they love going to a nursing home or memory care community, but sometimes it’s the decision we have to make. I’m concerned that he needs a level of care that can no longer be provided in home. And I’m concerned about her well-being and safety.

I tell her that she can’t continue to live like this. She’s not sleeping. She’s not eating. She says she’s sick to her stomach all the time. She’s particularly worried about him hurting the dog. She can’t have people over to the house because it seems to agitate him. And she can no longer leave the house because she’s not comfortable leaving him alone.

“I can handle him at home,” she says. “I mean, how long can this go on?” I have no idea if this is a question she wants me to answer or a rhetorical question. I answer anyway. I tell her it could actually go on for quite some time.

I give her some advice on community resources. I tell her not to be afraid to call the police if she has concerns about her safety or Al’s safety. We talk about support groups, but she doesn’t seem interested. I suggest she start checking into nursing homes and memory care communities. Although she earlier said she couldn’t do it, she says she’ll consider it. She might be appeasing me.

Then I hang up my phone and get back to drying my hair. I head to work and get on with my day. I’m not sure if what I said to Laura was even close to helpful. Yet I’m not sure what I could have said differently.

That evening I get a call from Laura. She tells me Al is in the psych ward. She is upset because she thinks they gave him too many sedatives when he arrived. In her words, he’s a zombie. She’s also frustrated because they used restraints when she didn’t feel it was necessary. A social worker told her that there’s no way she can take Al home. They need to talk about other options.

Yet, she also tells me she’s feeling relieved that he’s out of the house, and she’s excited to get a decent night’s sleep. In the next breath, she says she’s feeling guilty for feeling relieved.

I hang up the phone as my husband is getting home from the gym. I pour a glass of Riesling. We sit on the couch together and watch some mindless TV with our dogs. We both vent about work. We talk about the weekend plans we have with friends.

My mind drifts, and I wonder if there could ever be a day when my husband sees me as a stranger. Despite my experience with dementia, I can’t fathom it. I can’t wrap my mind around that possibility. It’s not something that could happen to us. Not now, not in five decades, not ever.

I can’t stop thinking about how cruel it is that fifty beautiful years of marriage must end this way for Al and Laura. I want Laura to have peace, but I can’t tell her how to get there. I can explain dementia, but I can’t help her make sense of it. Sometimes there isn’t a silver lining, and sometimes you come up empty in a search for meaning.

The 2041 Words That Helped Me Understand Dementialand

alzheimer's, caregiver, dementia, dementialand, , ,

I’ve written this blog since January. This is my 73rd blog post, which blows my mind. I’ve received positive feedback…and I’ve gotten some negative feedback at times as well.

I’ve written a few posts that make me really proud. I’ve written some that I would say are just okay. There are a couple that I’m not sure are all that great, and I’m fine with that. All in all, I have to say that the joy for me in writing this blog has come from the connections that it has helped me make rather than the quality of the work.

I wouldn’t necessarily call myself a private person, but I’ve struggled at times to put my experiences and perspectives in writing, not knowing what type of response I might receive. I’ve written about a few regrets I have, and I regularly visit my many weaknesses and vulnerabilities. Sometimes I open up a bit and wonder if I shouldn’t have. In the end, I’m usually glad I did.

All of that pales in comparison to some of the blogs I read that are written by people with dementia. I am particularly impressed with the raw honesty of a blog by a woman in her 40’s with younger-onset Alzheimer’s disease named Melanie. It’s insightful, courageous, and amazingly real. Her work is far more more compelling than anything I’ve ever written or will ever write.

There is one particular post that I have read about 15 times. It has helped me understand dementia in a way that I did not understand it before. It also continues to break my heart.

A link to the post is included, and I have pasted the entire post below.

Thank you, Melanie. You are making a difference.

https://mwagner21.wordpress.com/2015/07/15/remember-me/

.. Remember Me .. 

JULY 15, 2015 

I knew it was coming, but the knowing didn’t make it any easier.  New doctors 😦

After a horrible ordeal at my recent new neurologist’s appointment, I didn’t talk for quite awhile to my husband or daughter who took me to the appointment. I truly was just tired of it all.. the questions, tests, blood work, etc. On top of that, this highly recommended and well qualified neurologist was completely rude, interrupted each of us as we tried explaining me .. yep, feels like just yesterday, or should say 6 years of frustration with doctors with their questions, disbelief, egos bigger than the room their in, and then the overwhelming ending statement “well, there’s not anything more we can do” ..

yes I know I’m dying.. yes I know there’s no cure, no medicines for the disease, only endless pills for the symptoms and then more pills to counter those pills’ side effects … an unending cycle I want out of so bad. But can’t a doctor just give me a little bit of hope.

Finally after a bit, we took my daughter to dinner for her birthday and I was able to process everything and speak a little of how I felt. I looked at my husband and said “I just don’t want to talk to anyone anymore” .. I asked if he understood what I meant by that and he said “yes”. I thank God everyday for my husband and his “knowing” and comfort and peace he gives me. I don’t want to talk about what’s wrong with me over and over with more and more doctors or about all my medications and prognosis. I just want to be left alone.

So the medications I’ve been on since diagnosed, that again, do not do anything for the disease itself, only the symptoms of the disease… are no longer working. They were hoping they would at least help me focus a bit more, which it did for a few years, then they hoped the other med would slow down my progression.. after being tested 3x a year to follow my progression, the med has not helped .. not even a little.

In this disease, you either plateau – stay even for a bit or even longer or you just decline rapidly – all at once, or in the beginning and then later .. I’m back to that steady decline. My earlier hospitalization this year, really hurt me mentally. People think going into the hospital is a short ordeal, and then you go back home and you heal and get better. With this disease, it doesn’t always work that way for us. Sometimes we never recover from the mental and physical breakdowns. In my case, as I have fought back hard all these years from over a 100 admissions, this last one, I haven’t been able to get my footing back, my fight.

I have literally gone back to where I was the year I was diagnosed in every aspect. I look back now at the past few years and yes, I do appreciate the health, the strength and drive I was blessed to have, but now I’m truly scared. In the beginning after you battle the depression, anxiety, fear, hopelessness… you eventually come to terms with it and move on – fight back as much and as often as you can. The promise of meds to help, good doctors, progress – oh progress – I wish for that, but it’s not to be anymore.

My tests have shown a sudden fall in everything, too fast for me to even grab a hold of one aspect of it to try and stop it, or push through to make it at least bearable. My anger is back, frustration is growing, my words (though you may seem they are good as I write this) are not there when I go to talk or to express what I need or even when I need help. Their random, they don’t make sense most of the time and most conversations are filled with so much bitterness and anger.. I’m losing control and can’t seem to stop this spiraling. This isn’t me. I just want to be “me” again!! I truly hate this disease and what it does to all of us with it. I hate what it does to our caregivers, their pain, frustration and helplessness. The tears – never ending.

I want to apologize to anyone who reads this, if I’ve ever commented or posted anything to offend anyone or anger some. I truly don’t mean to. As I try and write what I feel, or truly try and comfort or encourage others – my words are just not coming out right anymore. From this point on, I may continue my blog, but I may have to face the fact of just shutting out my other social media outlets. My brain just can’t seem to grasp all the “clutter”, chaos, information… you may think those words are harsh, but to someone with this disease, that’s what it feels like to us. Too much stimulation, too much to try and comprehend and then try and process. What used to be so easy, is now so hard to just grasp other people’s words, appreciate their beautiful photos – because you’re trying to remember who they even are, to read a wonderful quote or prayer and not be able to process the meaning anymore.. this world sucks. I wish I had a different word for it, but I can’t think of any right now and may never again.

My reading and writing have also both deteriorated so bad. I thank God for my continued use of a keyboard, for “auto correct”, though it can’t correct any feelings that just aren’t coming across exactly the way I want them to. I wish there was an easier way to express how all this feels. To be able to help someone out there to understand, to be able to encourage others with this disease with problem solving ideas like I used to be able to do, or just give information to help ease some of the anxiety that caregivers feel. I’m lost. I’ve come so far to only recede back to where I was years ago.

This is what dementia looks like. We may all have different forms of it, classifications, stages and progression, but the symptoms are all the same, they just happen at different times and degrees.

Well, it’s after 4am and I have yet to sleep tonight. None of my meds help with my sleep anymore. Insomnia is now more common than a night of sleep. I have a fellow friend with the disease who also shares this same nightmare, of sleepless nights, unable to “shut off our brains”, though their not working quite the same, their still running “non-stop”.

As far as my new doctors, I understand their evaluations of me. I’m thankful that their no longer going to put me through rigorous testing anymore and constant hospital admission. I still have to do my progression testing every three months, but those have a new meaning to me: embarrassing. Questions I cannot remember the answers to; the year, the president or even things he wants me to remember and repeat later on, or the “where am I” or where do I live… frustrated, anger, embarrassed, helpless.

Those feelings are why I haven’t written in awhile. I don’t know what to say or how to say how I feel other than those words.

My husband and I have now settled where it’s warmer year-round for me, to help me, as I can’t take the cold anymore. We’ve prepared for the worse that is approaching much quicker than any of us would like. Last year, they gave me a projected date “maybe 2 years Mrs. Wagner” .. that’s what I remember them saying. I always brushed it off, as they truly don’t know, it could be 10 years. I can fight this, overcome it, keep praying, believing in a miracle.. I never gave in to a “final date”.. just kept on going.

The past month has changed all that. At first I noticed it, then my husband did. Little things just like 6 years ago, now much bigger things are happening. I’m blessed my husband can be with me every single day and night, so I’m not alone, and he’s there to help, to make sure nothing happens to me and I’m safe. But it’s getting harder as I reach for something and I drop it every time now; I open the refrigerator door and forget to close it; I start my morning routine (because I have to have a routine now due to this disease, anything out of sync will absolutely sink me, and that’s no exaggeration) and then I’ll miss a step – leave the water running in the sink, try and start a cup of coffee (and we have an easy Keurig for me to use) but forget how to even push the button or close the lid and I just stop and stare at it, hoping something would “click” and I can figure it out, but it doesn’t, so I just sit on the couch as usual and hope I can just process how to lay down, pull up a blanket or even answer my phone, which is becoming more and more difficult. Then the randomness pops up here and there: I can use my laptop once it’s been opened for me, “surf” through my emails, but can’t really understand most of what I read, so I leave them for my husband. Again, so thankful for him and all that he does for me, for us, our home, our family.

I’m not sure when I’ll be able to write again as these moments are fleeting now, of comprehension, awareness and focus.

It will be sad to leave my family and friends on facebook, etc, but I’ve gotten to that point in this disease where I don’t feel like I’m a benefit to anyone anymore, nor any good “news” on my end. I wish everyone much love and prayers and all of you will always be in my heart and mind, even if I’m losing touch with faces or names, I remember feelings, warmth, love and encouragement. I know I am supported more than I deserve and I am so grateful to each of you. Someone will keep anyone posted that would like to know or if ever close by, to visit, though I’ll apologize now if I’m not “quite there” anymore. My 45 years have been filled with all of you – great and true friends, warm and loving family – God has surely blessed me and I thank Him everyday for each gift He has given me. Till He is ready for me to come home, I’ll never give up, I just have to fight a little differently now.

The following song sums it up in a bittersweet way ❤

“Remember Me” lyrics below by Chris Mann – who wrote this song as an anthem for Alzheimer’s:

“I need someone to hold, to hold on for me ~ To what i can’t seem to hold  on to ~ The life we used to live, is slipping through my fingertips ~ Like a thread that’s unraveling ~ I suppose that nothing lasts forever, and everything is lost in its time. ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ Remember me ~ I know there’ll come a day, when i have gone away ~ And the memory of me will fade ~ But darling think of me, and who I use to be ~ And I’ll be right there with you again ~ I hope I’m one thing worth not forgetting ~ Tell me that you’ll never let me go ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ 

Remember me…

The Prime Time in Dementialand (and Why You Don’t Want to Listen to Me Lecture at 2pm)

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When I was a teenager, my mom bought me a nightshirt that said “Perky Morning People Should be Shot” across the front. Looking back, that statement was a bit harsh, but I often threw a fit (aimed at my mother) about having to get up early in the morning. And I wore that nightshirt until I was about 25…until it was virtually transparent.

Despite my allegiance to that nightshirt, I can’t say I’m not a morning person. I don’t enjoy having to get up at 5 am, but I’m most productive in the mid-morning (from 8 to 11ish). If I have important work to do, I try to structure my day to get it done in that time frame. When possible, this is when I teach my college courses. I also attempt to schedule important meetings around this time. (And, in case you were wondering, my blog posts are on scheduled released. I’ve talked to a few people recently who were impressed that I was up at the crack of dawn doing my blog. Nope. I’ve usually fast asleep when my blog posts are released.)

I’m also can’t say I’m not a night person. I’m definitely not an owl who stays up ridiculously late, but in many ways I feel my best at night. I do my best writing in the later evening (from 9 to 11ish). I feel most creative in this time frame. I’m usually happiest at night as well. If you want something from me and want to make sure I’m in a good mood when you ask, try 9 pm.

What I am not is an afternoon person. For as long as I can remember, I’ve disliked afternoons. My complaints about the evils of afternoons are many…For instance, I struggle to concentrate and lack motivation. I don’t have much patience in the afternoon. I am much more likely to be annoyed by something inconsequential in the afternoon than at any other time. I also have more anxiety in the afternoon than in the morning or evening–although I’ve never figured out why.

I’ve tried various strategies to change this, including going to bed earlier and changing what and when I eat. To be honest, I’ve tried consuming large and potentially hazardous amounts of caffeine. (In fact, I’ve tried everything short of illegal drugs to increase my energy in the afternoon.) Those things do make a small difference, but I’ve come to the conclusion that I’m just never going to be at my best in the afternoon. Trust me…you don’t want to have to listen to me lecture at 2 pm. I’ll get through it if I have to, but I’m not as “on” as I am at 9 am.

A couple of years ago I was making plans to work with a colleague on a project that involved a lot of tedious data and a few statistical methods that we had both learned in grad school but rarely used. I asked what time we should get together.

“Let’s do late morning,” she said, “That’s my prime time.” I wasn’t sure what she meant by prime time, so I asked. She explained to me that her prime time was the time of day when she felt sharpest, and she tried to schedule her most taxing tasks in her prime time. I’m not sure why, but it had never occurred to me until this moment that I could (and should) try to schedule my day around my “best” times when I could. (I’m fortunate to have a job with some flexibility that allows me to do this, and I know not everyone is as lucky.)

If you think about your day, there are probably a couple of “pockets” of time when you feel best. Maybe you’re happiest and most productive in the early morning. Maybe you don’t really wake up until noon. Perhaps you’re the type of person who thrives late at night after most of the world has gone to bed.

A few websites suggest that you can start a spreadsheet to track your energy and mood throughout the day in order to figure out when you’re at your best. However, I would argue that if you have to collect data to figure this out you probably don’t need to worry about it much. Without a chart, I can tell you that I’m pretty lackluster in the afternoon.

No one is at their best all the time.

That includes people with dementia. Individuals who have dementia may see the patterns they have experienced their whole lives exemplified. Or the patterns may change. Either way, the patterns become more important. And structuring one’s day around these patterns, and a person’s “prime time” becomes more key to quality of life.

Recently I talked to a woman, Heidi, whose husband has Alzheimer’s. She told me that they took a trip to Hawaii, which had always been a special place for them as a couple. I asked how it had gone.

“Not good,” she said. “Not good at all.”

Heidi told me that her first mistake was booking a flight that left at 6 am. Her husband had never been a morning person, and he struggled even more with mornings after his diagnosis. Getting out of bed before the sun came up seemed to increase his confusion. He kept forgetting where they were going and didn’t believe Heidi when she repeatedly told him about the trip. He even asked a flight attendant where the plane was going and doubted her answer. The combination of traveling and being up early made for an awful experience–for them both.

Heidi’s husband also struggled with the tours and planned events on their vacation. He was used to “downtime” at certain points during the day. One day they were on a bus tour (at a time when he would typically be sitting on the couch watching TV) when he become confused and panicked. They had to get off the bus and call a cab to get back to the hotel.

Heidi realized that maybe the trip itself had just been too much for him, but she also realized that she could have been more sensitive to his prime time when she planned. She assumed he’d be able to adjust. He would have been able to adjust a few years back, but she had to admit that his prime time had become important to the success of their activities.

And what about those with dementia who must adjust to life at a nursing home?

You won’t hear me knocking nursing homes as a whole. I know that there are great nursing homes, and there are not-so-great nursing homes–to put it nicely. Some of the kindest people I’ve ever met work in nursing homes. But there are a lot of downfalls to institutional living…

Although we are trending (too slowly) toward more individualized care, life at most nursing homes is quite scheduled. Meals are offered at certain times. You are expected to get up and go to bed at certain times. Activities are on the calendar. These events are often not dictated by an individual’s preferences but by the convenience of the facility. And this is not a criticism of facilities…they are usually understaffed and attempt to plan in the most efficient way for all. Unfortunately, it’s sometimes about the greater good rather than the well-being of one individual.

However, attempting to adjust to this schedule can be hard for people with dementia. In fact, it would be difficult for anyone. I know plenty of people of all ages who enjoy sleeping in…but how does that work with the schedule at a nursing home? And what about night owls? How can you stay up and watch TV when your roommate goes to bed at 7 pm? As a professed afternoon-hater, I worry that all the best activities might happen in the afternoon when I would prefer them in the morning. Individuals with dementia may struggle to make these adjustments–even more than the rest of us.

To function in the “normal” world, we are forced to play by the rules. I sometimes have important meetings at 2 pm. When I have to do reports at work, I may only have an afternoon time slot to get them done. That’s the way life is, and I adjust. After all, I’d like to keep my job.

However, adjustments may be more difficult for those with dementia. Someone who struggles with having a conversation may do well when they have visitors during their prime time but find conversation more taxing at a different time of day. If Grandma wants to go grocery shopping but sometimes finds it overwhelming, it may be useful to make sure she goes during her prime time. And if Mom typically takes a nap in the afternoon, it might not be best to plan the family Christmas celebration at 3 pm.

It sounds simple, and it is–really. If you are a professional or family caregiver, help people with dementia create schedules that work with (not against) their prime time. Be conscious of times when people may not be at their best. Consider the individual’s priorities and assist them in managing their time in a way that uses their best moments to maximize those priorities.

And do the same for yourself.

Mean Listening Face in Dementialand (or the Importance of Non-Verbal Communication)

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I was diagnosed by my husband as having an affliction called Mean Listening Face about four years ago.

A college student that I had in class previously was at our house for pizza. She was telling me about how she had recently applied for a few positions at non-profit agencies. She looked at me and stopped in the middle of a sentence.

“Oh, is that not a good place to work?” she asked me. I had no idea why she was asking me this.

My husband jumped in and said matter-of-factly, “Elaine isn’t intending to give you that look of disapproval. She just has Mean Listening Face.”

This was the first I had heard of my Mean Listening Face. I didn’t argue with my husband, and there was no further discussion of this affliction between the two of us.

A few days later, I was out to lunch with a friend. I decided to ask her if I had Mean Listening Face. I anticipated that she would ask me what the heck I was talking about and then tell me that my husband was crazy.

Instead, she said, “Yeah, I totally see where he’s coming from. I don’t know if you’d make a good counselor.” I went from being annoyed that my husband was overanalyzing my behavior to wondering why no one had told me this sooner. Seriously, friends…you should’ve done an intervention long before this.

I went home and looked in the mirror. I tried to pretend that someone was telling me something important and personal. Sure enough, I got these lines on my forehead and my eyes got intensely squinty. Yep. I had Mean Listening Face.

I realized that when I concentrated on what someone was saying…when I really wanted them to know that I cared…when I was processing what they were saying with all of my attention…I looked annoyed. I looked angry. I looked like I was trying to shoot bolts of fire out of my eyeballs. It’s a great face for playing cards when I don’t want anyone to know what I’m holding, but not a great face for empathetic listening.

You might think this is a small thing, but it’s really not. College students come to my office and need assistance. They may be struggling with college life or feeling like they don’t belong. They might not know what major to choose or what direction they want to go in life. I’ve even had students who are dealing with depression or anxiety. And what do I do? I give them Mean Listening Face.

And then there’s the work I do with dementia caregivers. In my conversations with them, it occurred to me that I might be giving off Mean Listening Face when they were depending on me to reassure them. Most of all, my husband’s diagnosis of my Mean Listening Face made me realize that perhaps I wasn’t giving off the vibe I intended to when I spent time with individuals with dementia. As dementia progresses, the words themselves become less important. The non-verbal cues become more important. In time, they become everything.

It’s about body language. It’s about facial expression. It’s about tone of voice. Dementia can destroy a person’s capacity to understand language. However, the ability to decipher the non-verbal aspects of communication remain much longer.

And the non-verbals are pretty important for those of us who don’t live in Dementialand. I have to admit that I get annoyed with college students who sit in class and roll their eyes at me. (I have actually dropped my attendance policy because I prefer students who roll their eyes at me just not come to class.) Then there are those who sit in the front row and make eye contact. When a student asks for a letter of recommendation, I have to wonder if their non-verbal communication with me is just as important (if not more important) than their verbal communication.

I had a series of several doctor appointments and an ER visit last spring that ended in a diagnosis of a separated rib. (Apparently you can have a separated rib even if you have no idea that you’ve had a traumatic event that may have caused a separated rib.) This was after misdiagnoses of a hernia, a kidney stone, and a urinary tract infection. Visiting several doctors in a span of a few weeks made me realize the importance of non-verbal communication in the medical industry. One doctor who saw me made me feel like everything I said was important to him. He made me feel like he genuinely was concerned about my level of pain. After leaving the office, I realized that he hadn’t said anything different than the other doctors I visited. It was how he said it.

While receiving the “right” non-verbals can make your day, receiving the “wrong” non-verbals really put you in a foul mood. I recently sat on an airplane next to a person who made it his goal to take up as much of my personal space as humanly possible. Without exchanging a word, we engaged in a battle. It was a battle of non-verbals. A battle of physical space. A battle over tray tables, carry-on space, and arm rests. A battle that I lost and let ruin my afternoon. I’m getting angry again as I think about it. Yet, not a single word exchanged during the two hour flight.

I’ve heard that 70% of communication is non-verbal. My theory is that this percentage increases as dementia progresses. When someone approaches end-stage dementia, how we say something is more crucial that what we say. And showing people that what they say is still valued–by eye contact, posture, facial expression, and touch–may be more important than our verbal response. People read physical cues long after they become unable to decipher words and sentences.

Last year I was visiting an adult day center and talking to a guy with vascular dementia, Bob. Bob is one of my favorite people. He is what I like to call “pleasantly confused.” He cannot tell you what year it is or where he is. In fact, he once asked me if I had come to see him so I could “shave his sheep.” (His family later told me that he had not been a farmer and had never owned any sheep.) Everything he says, however, is delivered with a huge grin. He has a laugh that lights up the room–even if the people in the room have no idea what is so funny.

Bob was telling me a story about a dog he had that ran away and came back home with a litter of kittens and a baby skunk. I have no idea if this story was true, partially true, or not true at all, but it was a really good story. And I had no interest in figuring out if it was true. It didn’t matter. It was the funniest story I had heard in a long time. However, I had to be back at the office for a meeting, so I took a quick glance over Bob’s shoulder at the clock.

“You’re in a hurry,” he said, stopping the story. “You’ve got things to do. You’d better go.”

My heart sank. I was upset at myself for giving Bob the impression that I was in a hurry and spending time with him was not a priority. Furthermore, it blew my mind that a guy who seemed so out-of-touch with reality noticed my split-second sneak peak at the clock. I was busted. On that day, I failed with my non-verbals, and I ruined a great story.

I’m working on my Mean Listening Face. It’s a conscious effort. When interacting with someone with dementia, I sometimes silently tell myself to relax my eyes and stop clenching my jaw. Actually, I do this when I’m talking to people who don’t have dementia as well. I’m hoping this will also help to prevent wrinkles as I age, but that’d just be icing on the cake. If you think you might also have Mean Listening Face, let me know. Perhaps we can start a support group.

Outside of Dementialand, words can connect us efficiently. Yet, the deepest and most intimate connections are based beyond words. No place is this more true than in Dementialand…where words often fail us. If we want to connect heart-to-heart with people as they move toward the end of their dementia journeys, we must sometimes forget words and speak a different language.

Friends Who Make Like Trees in Dementialand

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In one of my college courses, I often found myself sitting directly behind an African-American woman who wore her hair in cornrows. I was fascinated by her cornrows and found them gorgeous. As a white girl who couldn’t even braid, I was amazed at how tiny and detailed the braids were, and one day I decided to tell her that.

I started with something like this: “I hope this doesn’t seem weird, but I have been sitting behind you for this whole semester and I just have to tell you how much I like your hair.”

She thanked me, and we talked about how long it took to do the braids. I’m not sure I’d say we were friends after this conversation, but we were at least “friendly.”

I didn’t think too much of our interaction until a few months later when I attended a panel discussion on campus. The panel discussion was on ethnic diversity. I remember sitting in the front row and looking at a long table of experts on ethnicity, discrimination, and social relationships.

The people on the panel talked extensively about things you should not say to individuals who are ethnic minorities. In the midst of this discussion, an African-American woman said that you should never ever–under any circumstances–say anything about a black woman’s hair (which, of course, I had recently done).

I also remember someone saying that you should never ask a question based on a racial stereotype. They gave two examples, which I clearly remember. First, you should not ask an Asian person if they play the piano. Second, you should not ask an African-American man if he plays sports. In addition to breaking the “rule” about talking about a black woman’s hair, I had also recently asked if an African-American man if he played basketball. To be fair, he was a college student who was about 6 foot 8 and was wearing basketball shorts around campus–but I had broken that “rule” as well. (And, yes, he was a college basketball player.)

I am sure that there were many useful points made at the panel discussion on diversity, but my 19-year-old brain wasn’t able to process all of them. Instead, I was stuck on how some things I had said could have been perceived as offensive. And it bothered me. A lot. I even asked my roommate, Erin, if she thought I was racist. (If I never thanked you at the time, Erin, I’d like to thank you now–more than a decade and a half later–for assuring me I was not a racist.)

I left the panel discussion afraid to talk to people who were different from me. I worried that I would say the wrong thing, even if I was well-meaning. Obviously, that wasn’t the purpose of the panel discussion, but it was the impact it had on me at that point in time. I thought maybe it was better to not interact with someone than to say the wrong thing to them.

In a way, I had felt like that before in a very different situation. I had a friend in middle school whose mother passed away from cancer. I didn’t know what to say to her, so I avoided her. I didn’t go to her mom’s funeral. I saw her in the hallways at school and walked the other way. I saw her as different than me…I had a mom and now she didn’t. I had no idea how to relate to her. I didn’t want to make the situation worse.

We don’t know what to say to people who are different from us in some way, so we don’t say anything at all. We think it’s better to say nothing than to say the wrong thing. We feel more comfortable abandoning people than risking a situation where we might flounder or say something stupid.

I lost one of the best friends I’ve ever had, Sandi, to cancer almost a year ago. I remember sitting at her kitchen table last summer as she told me that she would see people she knew in the grocery store and they’d escape to another aisle so they didn’t have to chat with her. It made me angry. Yet, I don’t want to think that all of those “avoiders” were terrible people. I think that many of them avoided her because of their own fears and insecurities. I have to wonder if they just didn’t know what to say–so they didn’t want to have to say anything. It still bothers me that people were uncomfortable seeing Sandi after her diagnosis, especially because she was the type of person who was really good at making everyone around her feel comfortable and at ease.

It bothers me that we run away from people who need support because we worry we are going to say the wrong thing or because of our own issues. When I talk to people who have been diagnosed with Alzheimer’s or a related dementia, they often tell me that friends just disappear. It makes me sad. However, I’m an optimist at heart, and I can’t think that all of these people who disappear are awful human beings. Most of the avoidance of those who have dementia is based on fear. Fear of awkwardness. Fear of not knowing what to say. Fear of doing the wrong thing. Fear of the same thing happening to us. Sometimes being there for someone takes us out of our comfort zone. We need to do it anyway.

And I can apply those same thoughts to situations where people have other serious illnesses, are caregivers, and have lost a loved one. (I notice when someone has lost a loved one support peaks at the time of death and the funeral….and then abruptly decreases as life returns to “normal” and there is no socially mandated way to support someone.) We feel inadequate to help people, so we don’t even try.

On a personal note, I have a family member with a serious mental illness. At times, I’ve felt avoided by people I thought were friends. Looking back, I’m sure they were uncomfortable and didn’t know how to support me, so they just thought it was better to make themselves scarce. The people who reached out to me when things were rough weren’t always the people I expected, but I will never forget who they were. They didn’t know the perfect thing to say or do, but they reached out anyway.

It is not okay to avoid people who are struggling because we are afraid. Sometimes it’s gonna be awkward. Sometimes we won’t know what to say. Sometimes we will say something that doesn’t come out right. And sometimes we will have a major foot-in-the-mouth situation. (I’ve had many….) But it’s okay.

I’ve seen some articles online with titles like “10 Things Not to Say to Someone with Cancer” or “What You Should Never Say to Someone with Alzheimer’s.” I appreciate the notion, but I also wonder if articles like this increase our anxiety about interacting with someone who has a serious illness. Instead of focusing on making a positive difference (what we should say and do), we become more censored, more hesitant–because we don’t want to say the wrong thing. Sometimes I feel like telling us what not to say to someone makes us feel like the distance between us and them is much larger than it really is.

Here are my rules for supporting someone with dementia and their family (and you can apply these rules to others who might be struggling as well):

1. You will say the wrong thing. Just accept that at some point you will say something stupid.

2. There is no right thing to say anyway. No matter what you say, the person will still have dementia. What you say or do can’t fix that. (You aren’t that powerful.)

3. After you’ve accepted that you will say the wrong thing and you can’t cure illnesses, keep showing up–literally and figuratively.

Last week, I had breakfast with a woman whose husband has Alzheimer’s. She told me that she really only had one friend these days. All of her other friends had (as she said) “made like trees and left.” However, she managed to not be bitter. She explained that she knew it was hard for them to spend time with her and her husband. She realizes she and her husband are a scary reminder of what could be in her friends’ futures.

“They don’t know how to act,” she told me. “The life I’m living right now is terrifying to them. I get it and I’m okay with it.”

Maybe she was okay with it, but her justification of their absence made me feel like crying.