This post isn’t really about dementia.

It’s mostly about me, and it’s mostly for my college students.

In the past few weeks, I’ve spoken at two Alzheimer’s caregiving conferences. I got to present on dementia at an event for long term care social workers in my state. I did a training for case managers at an area agency on aging. And tomorrow I’m coordinating an event to bring a woman with younger onset dementia to campus to share her experiences. (Also, if you read my blog last week, I’m excited to tell you that it sounds like I might be headed to the Motherhouse–yep, that’s what it’s called–to educate individuals who care for aging nuns.) I have a few emails in my inbox from people inviting me to come speak or do a training for them. I need to look at my calendar and see which ones will work.

I’m not saying this to be braggy or arrogant. I actually wish there was less demand for my skills because, although I’m fortunate that the university has allowed dementia outreach and education to be a part of my position, it’s only a small portion of my job. I have no doubt it could keep me busy 40 hours a week. And that’s not a good thing. I wish there was no dementia at all.

When I look back on my career, I’ve done a few things right (and a few things wrong–but that can be another blog post). One of the things I’ve done right is to identify a tremendous need in an area where many other people have little interest and to pursue that area with my whole heart. When I started doing programs to educate people about dementia, I figured there must be a lot of people out there doing similar presentations, but when you consider the number of people with dementia, there really aren’t….

By necessity, we have lots of people, paid and unpaid, caring for people with dementia. We have few people educating those caregivers. The more programs, trainings, seminars, and conference presentations I provide, the more I realize that I’m not doing anything that someone else couldn’t do. I learn about dementia (from research articles, from books, from people living with dementia, from conferences, even from my own empirical work). I repackage what I learn. If it’s boring, I try to find a way to explain it in a way that is interesting. I regurgitate it in a way that is easily digestible. When possible, I throw in some jokes to keep people’s attention.

As a faculty member at a regional comprehensive university, I often have opportunities to visit with college students about majors, careers, and their future plans. I don’t expect them to know what they want to do with their lives at age 18. In fact, I worry about the incoming freshmen who are absolutely set on a career path.

I spend a lot of time talking with college students about not what they should pursue, but rather how they should determine what they should pursue. In my opinion, college isn’t about getting A’s. College is about finding your thing.

Based on my career experience, here is my advice for college students:

Step 1: Find something you like doing that other people either aren’t doing or don’t like doing. (Example: “You like spending time with people who have Alzheimer’s? Isn’t that depressing? Isn’t it hard being around people who might die soon?”)

Step 2: Learn everything about this area. Learn so much that you can’t help but annoy your friends and family by being able to apply anything you experience to your area of interest. (Example: “Every time I fly I can’t help but think about how non dementia-friendly air travel is.”) Be able to give a two minute speech about your thing and why it’s important in the world. Don’t be deterred if people in your life ignore you or roll their eyes. Be unapologetic about being a nerd.

Step 3: Become really good at what you do. The better you become at your thing, the more you love it…because we love things when we are good at them. (Example: There’s a reason I enjoy giving lectures on dementia. On most days, I’m pretty good at it. There’s a reason I don’t like putting together furniture. I usually mess it up. Messing stuff up isn’t fun. Doing well is fun.)

Step 4: Understand that to keep doing something you love, you might have to do things you don’t love. You can minimize those things but never completely eliminate them. Deal with it. No one likes everything about their job all the time. Don’t let your distaste for a smaller piece of your job mess with your opportunity to do your thing. (Example: I have to write reports on our programs for the university. It’s not my favorite, but I’ll do it because I have to do it to keep doing my thing.)

I’d like to say that I followed that advice when it comes to my own career,  but that would be giving myself too much credit. Rather, this is based on hindsight. I can identify what I did right–even if my actions were less than deliberate.

This weekend I found myself in Minneapolis for work and ended up at the Mall of America. While my friend and colleague Kristin went to Justice, a store that is both confusing and frightening to childless gerontologists, to buy her daughter leggings, I went to the makeup megastore Sephora to see if I could find mascara that wouldn’t make my eyelashes look clumpy.

I encountered a saleswoman who loved mascara and knew more about it than anyone I had ever met. Did I want my lashes to look super glossy? Did I want them to look longer? Curlier? Thicker? Then she reviewed with me the various types of brushes that come with different mascaras because the effect of mascara is a dependent on both the product and how it is applied to the lashes. Who knew? I now think of mascara in a completely different way. And I bought a $28 mascara that she recommended. Yes, I spent $28 on a Lancôme mascara. So far, it was totally worth it. I credit her knowledge and enthusiasm. Mascara is her thing, and she is the best at it.

Do your thing. Be the best at it.

Someone recently asked me if I was worried we would find cures for various types of dementia and I’d have nothing to do.

No. Dementia is fascinating to me, but the most fascinating piece will be learning how we finally end it.

I can always find a new thing. Return to step 1. It’s never too late to go back to step 1.

A couple weeks ago I talked to a nun about Alzheimer’s disease.

She started the conversation by telling me that she was a sister and took care of several sisters with Alzheimer’s. I thought she was going to ask me a question about the genetics of the disease, but I had it all wrong.

It took me way too long to realize that sisters meant…sisters. In my defense, she wasn’t wearing a habit, and she had told me that she liked my sparkly earrings (which certainly did nothing to tip me off about the nun thing). Honestly, her appearance did not meet my expectations of what a nun might look like. For instance, she was wearing cute shoes.

I’m not sure what I expected a nun might have to say about Alzheimer’s. Maybe I expected she’d have found peace with the disease. Maybe I thought she’d be able to shed some light on the suffering I had seen among individuals with dementia. I expected something insightful that would help me to find meaning, religious or otherwise, in Alzheimer’s.

I didn’t get it from her.

“It’s just awful what my sisters go though,” she told me. “I just hate it.”

She told me about one fellow sister who in her fifties had gone from gentle and loving to anxious and even aggressive. It occurred to me that Alzheimer’s was a terrible disease if it could, literally, make a nun aggressive.

She talked about another nun who got confused while driving and ended up in the wrong lane. She hit a parked car. Fortunately, no one was injured, but it was left to her sisters to tell her it was no longer safe to her to drive. That did not go well.

She told me about the financial issues involved in caring for members of their community with Alzheimer’s and related dementias. I grew up Catholic, but this was something I had never thought about. The mean age of nuns is increasing, and this is creating an issue in providing adequate care for older nuns who might have significant health care needs.

I thought about my conversation with her all day.

I knew that nuns were obviously not immune to Alzheimer’s and other dementias. In fact, there’s a whole book devoted to topic called Aging with Grace (by David Snowden), which focuses on an Alzheimer’s study that uses nuns as participants.

It’s just that maybe I thought a nun would tell me that God has a plan…or that there was a reason for all suffering…or that somehow Alzheimer’s wasn’t that bad. In a way, she made the disease seem worse. I mean, if a nun says she hates something, that something must be pretty horrible.

Yet, a part of what she was talking about impressed me. Here was a family that was there for its own. Women, most of whom had never married or had children, were relying on each other in sickness and in health. And, in many ways, they were caring for each other in ways I don’t always see in biological families.

I may not be ready to run away from home and join a convent, but I was impressed with the sense of community she described. In fact, she and several of her sisters had come to listen to speak because they wanted to learn more about Alzheimer’s.

It occurred to me that she despised Alzheimer’s so much because she loved her sisters so much. It broke my heart as much as any person journeying through this disease with their parent or any woman navigating it with her spouse. Family is family.

She didn’t tell me that we needed to pray about Alzheimer’s, although I’m sure she would not argue with prayer. She told me that we need to raise more money for research for a cure. She said that we needed to do more education on the disease. I liked her a lot. I liked her so much that I offered to come to the convent and do a seminar on dementia care.

I gave her my business card, and I really hope she contacts me.

Recently I was contacted by a former student and current friend, Michelle Remold, who inquired as to whether or not she could submit a guest blog post for Dementialand. To give you a bit of background on Michelle, I must started by telling you that she was one of my first Gerontology majors when I took over leadership of the Gerontology program at our university.

At that point in time, the program had about half the number of majors that it does now, and I taught more courses than I do currently (my job has changed a bit over past several years and now includes more outreach and administrative work). Back in those days, an upperclassman in the Gerontology program likely had me for two to three classes a semester and had me as advisor. I also worked with my students out in the community, took them to conferences, and supervised all Gerontology internships (which are all things I still do). Let me just say I feel fortunate that Michelle is still talking to me after being forced to spend so many hours in my presence. 

When Michelle was in my program, I was still learning about coordinating a major and overseeing students. I was motivated, caring, and passionate about teaching, advising, dementia care, and pretty much everything else related to my career….but I constantly second guessed myself. In fact, I was so nervous that I was going to neglect to tell one of my Gerontology students to take a class that they needed to graduate that I regularly took their advising files home and reviewed them for hours late at night.

I remember Michelle telling me once, in the nicest way possible, that I was part advisor and part stalker. However, I was secretly proud when I took my Gerontology majors to a conference and they said that I would have “killed them” if they had answered their cell phone during a presentation like a student from another university had. I was even prouder that I sent an email to them with the subject line “What Not to Wear to a Conference” and they showed up not wearing all the things I suggested they not wear. (This was after the previous conference when I spent the whole afternoon deciding if I should loan a student who had worn a tiny halter top and short shorts my dowdy sweater. To be fair, she had no idea what to wear to a conference on end-of-life care. I had never given her any instruction.)

When I read Michelle’s guest blog post, I found irony in the topic. When she was a student in the earlier days of the Gerontology program, she was both a teacher and a learner–as was I. I tried to hide how much I still had to learn in those days. I think I did a pretty good job convincing those students that I knew what I was doing, but in reality we were learning (and teaching) together. And I learn as well as teach whenever I set foot in Dementialand.

Here is Michelle’s post:

I want to start by thanking Elaine for letting me write a post for her blog.

I recently read a quote and since I had already inquired about writing a guest blog with an idea in mind, it seemed to fit perfectly. The quote by Bishop T.D. Jake stated, “The world is a university and everyone in it is a teacher.”  This is especially true about Dementialand, except that Dementialand is the teacher.

I am currently working on my master’s degree and big part of that is role playing and critiquing ourselves on how we handle a variety of situations.  For myself, I know I am going to work with older adults and ultimately want to work with families of people who have a dementia, so role play situations without that component are hard for me to really get into because the practicality of me using it isn’t there.  The coursework I have taken was and is geared toward preparing me to help older adults find services, what different diseases look like, and how to be empathetic in having discussions with families.  However, no class could fully prepare me for what it is really like learning from Dementialand.

Let me back up.

I am not new to Dementialand and probably know more about Dementialand than most people my age.  I was introduced to Dementialand when I was six and have been there twice personally and numerous times as a student and as a professional.  By the time I graduated from high school, Dementialand had taught me about compassion, empathy, patience, and most of all how to live in the moment and not take it for granted.  Throughout college, Dementialand taught me more about the different ways dementia looks, family dynamics, how to give presentations on dementia, and how to sit with a family and really talk through the experience and reality of being in Dementialand.  This is stuff I didn’t learn from courses I was taking, but rather my own interactions and experiences. What I have learned is that there is no “typical” day in Dementialand and being able to adapt to what Dementialand throws at you is important.  That is easier said than done.

While working on my bachelor’s degree, I trained a group of students to visit dementia care communities with me and present a memory program.  I ran through scenarios with them and gave them examples of what to do if things went off track. However, when it came time for our first presentation of the program, they stood against the wall in shock while I interacted with those in attendance.  What I had failed to do is give them an accurate description of what Dementialand is really like. I had forgotten to prepare them for the sounds, sights, smells, and touch of Dementialand.

I’m not even sure that I could have truly given them the description they needed of Dementialand because it varies day to day, place to place, and person to person.  Since I have been in memory care communities since a young age, there isn’t a whole lot Dementialand can throw at me that would surprise me, but that isn’t the case with everyone.  People are always shocked at my reaction if someone comes up and starts petting my head (I am a redhead, which usually attracts attention) or gives me a kiss on the cheek.  They look at me quizzically and usually ask why I am unfazed.  Truthfully, at one point it really bothered me, but as time went on I got used to it.

While coursework provides me with the basic knowledge I will need to be successful in my field, Dementialand has been my true instructor in learning all I can about dementia.  What can be learned from Dementialand is astounding, but I have also come to realize that I need to be open to learning the lessons Dementialand has to offer.  After all, you can never learn too much.

If I have other alumni who are interested in contributing a guest blog post to Dementialand, they should follow the same highly professional procedure that Michelle did to inquire about submission…. In other words, text me.

This is the third in a series of post about dementia and the senses.

Today we address taste.

We use our taste buds to taste four flavors: salty, sweet, bitter, and sour. (There is some controversy about whether there is a fifth flavor, umami, which is sometimes described as savory, but we’ll leave that for another discussion.) Everything we eat–Cheetos, tofu, kiwi, frozen waffles–is a unique blend of these flavors.

Taste is our perception of the combination of chemical signals on the tongue. Dementia may alter this perception.

We think that our ability to perceive bitter may be altered the least as dementia progresses. This may explain why people with dementia tend to reach for sweets. They are attempting to compensate for something that tastes more bitter than it used to. Although the specific cravings and preferences of people with dementia vary, there is no doubt that dementia changes how we experience the combination of tastes as we eat.

Let’s say Lee has Alzheimer’s and was recently admitted to a nursing home. For many years, she and her husband have frequented a local Italian restaurant. She’s been asking her family to take them there for their upcoming 50th anniversary. Her family thinks this is a fabulous idea and makes reservations for a dozen people. Several weeks in advance, they start to talk to Lee about the event. They even mark the date on a big calendar in her room.

The day finally comes, and the nursing home staff dresses Lee in her favorite dress. Her family gets her to the restaurant. She orders the fettucine alfredo–the same dish she has ordered at this restaurant since it opened 30 years ago.

When her food arrives, she takes one bite and says, “This is awful. I don’t know why they changed the recipe. I can’t even eat this.”

I hear variations on this story. Sometimes it’s a family holiday recipe. Sometimes it’s a chocolate chip cookie from a recipe that Grandma herself perfected. Maybe it’s a boxed cake mix that isn’t the same as the last time Mom purchased it.

Grandpa tells grandma that she obviously forgot to put an ingredient in her special coleslaw this time. A mom loudly tells her adult daughter that another family member messed up the Christmas turkey in such a horrid way that it’s not even edible. Maybe she even throws it out when no one is looking.

If there’s one thing I’ve learned in the world of family life and caregiving, it’s that food is more than food. Food is love. If we love people, we want to feed them.

There is nothing more heartbreaking to me than a family member who goes to the ends of the earth to bring a loved one with dementia their favorite food in effort to show love…and then that loved one takes one bite and spits it out in disgust. Unfortunately, it happens a lot.

The person who has dementia isn’t intending to be difficult. It really does taste all wrong to them. Maybe it was their favorite food. Maybe it wasn’t that long ago that they really enjoyed it. And maybe they even requested it. But it doesn’t taste right.

On the other hand, sometimes foods that would not have been appealing in the past to someone with dementia become irresistible. I know a guy who ate a whole can of store-bought vanilla frosting while his wife was in the shower. She only realized this when she saw the empty frosting can in the trash.

“How could you eat something that sweet?” she asked him.

“I used a spoon,” he responded matter-of-factly.

The same man also managed to eat an entire box of powdered cake mix and about a cup of straight brown sugar once when his wife was downstairs folding laundry. She realized she would have to keep some of her grocery items locked in a cabinet. She decided to leave a few pieces of hard candy out at a time, so he could have a sweet treat without going overboard.

When someone tells me that their loved one with dementia only wants ice cream, or cookies, or cake, or pudding, I tell them that that the closer the person is to end-of-life the more they should give in to these preferences. If someone with dementia has years of life ahead of them, balance their preferences with an overall balanced diet when possible.

As they near the end of their journey, you give them whatever delightfully sugar- and fat-laden treat they crave.

This is the second of a series of five posts about the senses in Dementialand.

Today we focus on touch.

The issue of touch, or tactile stimulation, for those with dementia is complex. An entire book could be written on the topic, and I will be clear that this post is not a complete summary of how one should consider tactile stimulation for those with dementia.

But allow me to start here…

There are many articles that tout the benefits of touch for those with dementia. I often read that people with Alzheimer’s don’t get enough physical contact. I hear that those who live in memory care communities crave touch. Sometimes people use the term “touch deprivation.” I cannot disagree, but I think there’s more we need to think about.

As humans, we like touch from individuals we like and trust. We don’t like touch from those we dislike and distrust. And we generally become anxious if we receive intimate touch from someone we don’t know.

Dementia doesn’t change this.

In the past couple of years, I have noticed a trend on campus. I have seen several small groups hanging out by our student union with signs that say “Free hugs!” For my own amusement (and because I have a psychology background), I have watched reactions when faculty, staff, and students pass the “Free hugs!” crowd.

Some people think groups offering free hugs to strangers are fantastic. They see this as all that is good about society. And then…there are people who are nauseated by the thought of someone they don’t know offering them a hug.

Let’s be honest. We all have varying levels of comfort with touch. Some of us are huggers; some of us aren’t. And those huggers can make those non-huggers feel pretty dang uncomfortable. I have seen non-huggers on campus walk an extra quarter mile to avoid the huggers. If I’m being honest, I’ve done it myself.

Throughout life, people with dementia have developed (just like the rest of us) their own expectations for when it is okay to hug, okay to touch someone’s shoulder, okay to hold hands, etc. And dementia complicates this…making it an oversimplification to think we are going to improve quality of life in Dementialand by running around offering hugs and holding hands without second thought.

If we touch people with dementia, we need to make sure that touch is welcomed and not anxiety-provoking. We need to pay attention to body language. If they indicate they are not comfortable, we need to back off.

I was at a nursing home once when a woman with Alzheimer’s had a visitor. It was her adult nephew, a gregarious guy who she hadn’t seen in months. He marched in and engulfed her in a bear hug. From a distance, you could see that the woman was uneasy or even scared.

From his perspective, he was embracing a woman he had known his whole life. To her, however, a strange guy had just walked into her bedroom (a space that is generally sacred–how many people do you allow into your bedroom?), rushed up to her, and pressed his body against hers.

He could have done a few things differently. He might have knocked on the door and said something like “Hi, Aunt Dianne. It’s your nephew, John! So good to see you!” before entering her room. He might have approached slowly to give her a chance to process who he was. As he moved closer, he could have looked for a positive sign (a nod, a smile, eye contact) that she would welcome a hug. These steps may, or may not, have caused her less anxiety.

People with dementia often have limited peripheral vision. This means that approaching someone and initiating touch from the side or the back can startle a person. I have many times made the mistake of approaching someone with dementia from behind and placing a hand on their shoulder. I don’t even give them a chance to identify and process who I am before I touch them. I don’t like someone putting their hands on me if I have no idea who that someone is. Neither do people with dementia.

I recently met a man who was caring for his wife with dementia in their home. For many years, they sat side-by-side each evening on the couch watching television. Sometimes he would put his arm around her. As her dementia progressed, he realized that putting his arm around her often triggered a negative reaction. She’d look at him with disdain and confusion before getting up to move across the room.

Perhaps it was that she wasn’t exactly sure where that touch was coming from because he was at her side rather than in front of her. Maybe she would forget who he was and wonder about this strange man  who had the nerve to put his arm around her. I wasn’t sure of the explanation. Painfully, I had to suggest that this gentleman stop trying to put his arm around his wife.

Sometimes those with dementia need assistance with activities of living (bathing, dressing, toileting, etc.) and this requires touch. The touch needed to complete these tasks may or may not be welcomed. However, there are a few tricks that caregivers may find useful.

First, make sure the individual can anticipate when and where touch will occur. Of course, you can relay this verbally by saying something like, “Marta, I’m going to help you put on your shirt.” As the disease progresses, these messages become harder for an individual with dementia to process. It may also be useful to make sure an individual can see the shirt, your hands, or anything else that might help them to understand what is about to happen.

Second, move slowly in providing care that requires physical touch. I understand that this can be challenging for a professional caregiver who works in an understaffed nursing home. It’s also not easy for a family caregiver who has a plate full of responsibilities. Keep in mind, however, that the same touch sequence can be perceived differently by a person with dementia when it is carried out more slowly. Sometimes what can be perceived as an assault or attack when you are in a hurry can be perceived as a moment of connection when one takes their time.

The brain must make sense of the information we gain from making contact with the world around us. We use our hands to test the bath water before we get in the tub. If it’s too hot, we pull our hands back quickly. Our brain has given us the message that contact with something this hot can be dangerous. We run some cooler water before we get in tub.

Someone with dementia may get in a bath tub full of dangerously hot water. Their brain cannot relay the message that the situation is dangerous. Days later, a family member may notice blisters or burns on their body.

Dementia changes how a person experiences the world. A favorite blanket might now be too heavy. An old sweater might become too scratchy. Shoes that were once comfortable might not feel quite right anymore. Someone who used to enjoy the sensation of sitting outside and feeling the breeze on their face might now be annoyed by the wind. A guy who used to enjoy peanut butter won’t eat it anymore. It’s a texture thing. He doesn’t like the way it feels in his mouth.

I know someone with younger-onset Alzheimer’s who suddenly hated wearing jeans–they just didn’t “work” for him anymore although he couldn’t explain why. His family had to buy a large supply of corduroys because that seemed to be the only type of fabric that wasn’t irritating to him. His new uniform became a pair of corduroys and an Iowa Hawkeye sweatshirt. Every single day. It just felt right to him.

These changes in preference are not indicators that people are being difficult. They show that communication between brain and body are altered.

This is the first of a series of five posts about the senses in Dementialand.

As I write this, it’s a gorgeous early fall day. I am sitting in our living room with the windows open. College football is on TV. There are a couple of candles burning…one in the kitchen and one in the bathroom.

Our ancient mastiff, Karl, is curled up in a tiny chair in typical Karl-fashion. Our 20-pound mutt, Gus-Gus, is sitting on my arm as I type. I’m so used to him being in this position that I barely notice how hard it is to navigate the keyboard. The cats have found a sun puddle to share.

I can hear our neighbor guy mowing his yard. He is retired, and he probably devotes 20 hours a week to his lawn. There is an odor in the air that tells me another neighbor must be grilling.

It’s cool enough that I’m wearing a sweatshirt, but warm enough that I’ve got on basketball shorts. I just heated up some canned soup for lunch. As I usually do, I added oyster crackers. A ridiculous amount of oyster crackers. I like the crunch and the saltiness.

It’s a good day.

It’s a good day because I am able to experience the world through sight, sound, taste, smell, and touch. Our experience of the world is based on those five senses, and our feelings and actions are based on this experience.

This makes me think about how dementia changes one’s experience of the world. And I have an idea.

Normally, I don’t have a plan for my blog. I don’t know what I’m going to write until I sit down and write, but this time I’m showing unprecedented forethought by doing a series–a series on how dementia changes how individuals experience the world.

There will be one blog post about each of the five senses. Today, for no particular reason, we will start with smell.

It is true that our sense of smell declines as we age. Many people will notice that as they get older they can no longer detect smells like they may have been able to in the past. However, the change that occurs for individuals with dementia is more severe and can even be dangerous.

Smell has an important function for us. It helps us to detect danger. People with dementia may lose the ability to interpret certain smells as signs of danger.

A few nights ago, I put a couple pieces of leftover pizza in the oven. Then I got busy putting away laundry and forgot about the pizza. You know what alerted me to the burning pizza? The smell of burning pizza.

People with dementia may also forget that they put something in the oven. However, they may not be alerted to a problem by the smell of food burning. They may even turn off a smoke detector because they think it is malfunctioning.

Smoke alerts us to fire…that connection is eventually lost for people with dementia.

Smell also alerts us to spoiled food. You go out to eat. You put your leftovers in the fridge. You forget about them–until something in your fridge start smelling like death a week later. You remember the leftovers. You take them directly to the trash can outside because if you put them in the kitchen trash your whole house will stink.

It doesn’t work that way for people as dementia progresses. It may not be that you cannot smell the odor of your leftovers. It’s just that you don’t interpret that smell as problematic. Your nose doesn’t shrivel up to make what is sometimes called “stank face.” You find the food from last week. You don’t remember when you went out to eat. You’re just excited you have something to eat for dinner. It isn’t rare for someone with dementia to experience food poisoning because they’ve eaten rotten food.

Unfortunately, it’s also not rare for someone with dementia to drink a liquid like bleach. If I tried to drink bleach, my nose would alert me to a problem before the bleach got to my mouth. My brain would immediately send out an “abort” message. However, the dementia brain may be unable to relay that message. I’ve known people with dementia who have tried to drink Clorox bleach, Pine Sol, laundry detergent, and glue. The chemical smell of these liquids didn’t trigger a danger warning.

You may not realize it, but the nose of a typical person does a routine sniff test of anything we want to put in our mouths. It sends a warning to the brain if something isn’t quite right. The dementia brain drops the ball on this.

Our sense of smell also alerts us to problems with our own hygiene. I’m gonna admit something here…I sometimes wear clothes more than once before I wash them. I take off items of clothing at the end of the day and must decide whether they go back in the closet or in the dirty clothes pile. (For me, this is especially true for jeans because they become more comfortable after multiple wearings.) You know how I make that decision? I smell the clothes. If I can still faintly smell laundry detergent, they go back in the closet.

A person with dementia might take off their clothes at the end of the day and throw them on top of the dresser. In the morning, they find some clothes on the top of the dresser and put them on. They may remember they wore these clothes the day before–or they may not. Maybe they do this for several days in a row. And then a family member comes to visit and asks, “What’s that awful smell?” The person with dementia isn’t bothered by the odor, so they are offended and angered by the question.

A woman I know was checking in on her mother, who was in the early stages of dementia and lived alone. She hadn’t visited for several days. When she walked in, the smell of urine was overwhelming. She went on a hunt to find the source of the odor. She found several pairs of wet underwear wadded up under the bed. Her mother, oblivious to the offensiveness of smell, couldn’t tell her how they got there. It’s likely she was so embarrassed about not making it to the bathroom that she decided to hide the evidence.

My husband and I have three dogs and two cats. Every once in a while, once of us smells…something. Maybe it’s the smell of pet urine. Maybe it’s feces. The instant we smell that, we are on the hunt to find the source. The smell is so offensive to us that we stop whatever we are doing to take care of it. It’s urgent.

People with dementia, even if they do smell those pet odors, may not be interpreting them as problematic. It’s not unusual that people with dementia forget to clean the litterbox or don’t pick up dog poop on the kitchen floor. Why? Because they aren’t motivated into action by the smell. Obviously, this can create unsanitary and unsafe conditions.

Keep in mind that our actions are based on how we experience the world. Dementia alters those experiences by changing our sensory perceptions. When people with dementia do something that seems illogical to us, it is often because those are logical actions based on their experience.

And those experiences are based on what they do and do not taste, see, hear, touch, and smell.

My path has taken me to quite a few memory care communities. People with advanced dementia have made all sorts of comments to me.

About once a month, I am asked when my baby is due—although I’ve never been pregnant. Ever.

I’ve been told I have the nose of a beautiful Jewish woman.

Someone once said, “You look just like my daughter. She’s a horrible bitch who never visits me.”

A while back someone seemed to have me mixed up with Hillary Clinton. I think this was a result of confusion between a TV news story in an adjacent room and real life. It’s not like I was wearing a power pantsuit.

A guy at a community I visit once a month has told me that either I’m really busy or try to give the message I’m really busy. He knows this because I usually wear my hair pulled back into a ponytail.

Sometimes people with dementia try to guess my age. When they say 50, I don’t take it personally. After all, they might have poor vision as well as compromised judgment. However, I forget about that poor vision and compromised judgement when they guess I’m 25.

This summer, a woman with dementia looked me up and down before saying, “Look at that thing. It’s so pretty.” I lived on that compliment for a week.

Once a lady with Lewy Body dementia was convinced I was sent by the devil, and she insisted that the staff remove me before I burned down the building. She had tears streaming down her face. I can still picture her shaking in terror…

I have emotional reactions—positive and negative–to what people with dementia say. However, lately I have been more in tune to what people with dementia can’t say.

As dementia progresses, people lose their verbal skills. To me, this is one of the cruelest parts of the journey. The thought of being unable to express myself verbally terrifies me.

I see people with dementia crying, and they are unable to tell us why. They might be in pain. We can’t determine where the pain is occurring and what’s causing it. They might be scared. We don’t know what’s scaring them.

Although connecting with someone who can’t speak can be challenging and time-consuming, that connection is incredibly rewarding when it occurs. Sometimes it occurs through touch. Or through a smile. Sometimes it’s music that helps us reach an individual who can’t speak. When we reach them…it’s something. When we are able to decipher a message that comes without words, it feels good.

A woman in a wheelchair once reached out to me as I passed her in a nursing home corridor. At first I thought she was trying to strike me, and then I thought she needed something. I asked her if she wanted me to push her down the hall. She grunted in frustration and reached out to me again. This time she grabbed onto my dress and tugged on it.

I asked her if she wanted me to get a nurse. She stared at me, obviously frustrated with my lack of understanding. She grabbed my dress again. This time she was almost petting the material like it was a cat.

“Do you like my dress?” I asked.

She broke out in a wide grin and nodded. That was it. She needed to tell me that she liked my dress. I immediately liked any woman who would go through this much frustration just to compliment another woman on her clothing.

I told her my “secret.” It is a dress from Land’s End, and I actually have at least seven of the same dress in different colors and patterns. (If you work with me, you’ve probably noticed this…I’ve no shame about it.) I told her that I had finally found a work-appropriate dress that I didn’t have to iron, so I was going to get maximum mileage out of it.

She gave me a huge smile. She understood.

As I walked away, I felt like a million bucks. It took a little extra time on my part, but her compliment was worth it. She had made my day. I went home and ordered one more version of the dress from Land’s End. This time it was in red.