I went to the visitation for a friend with dementia recently. Despite the bummer circumstances, I was eager to meet his family for the first time and tell them how much I enjoyed my friend over our visits for the past several years.

I’m writing here that he was my “friend with dementia” because I want my story to make sense within the context of this blog post, but I really just thought of him as my friend. I looked forward to seeing him, and my interactions with him always put me in a better mood.

I remember that I once wore a dress when I visited with him. He looked me up and down and said, “You have nice legs.”

I told him that I run half-marathons. His response was that half-marathons were okay, but I shouldn’t run full marathons.

I asked him why I shouldn’t run full marathons. He looked at me as if this were the dumbest question ever asked.

After an exaggerated roll of the eyes, he said, “Too loooooong.”

So I’ll stick with half marathons at the suggestion of my friend.

Sometimes we talked about his challenges with movement and balance. Other times, he talked about how frustrated he was with not being able to be as independent as he had been in the past.

More than anything, we talked about other stuff… And he enjoyed talking about me more than he enjoyed talking about himself. My job. My husband. My job again. My shoes (especially if they were high heels). Always my hair. And, unlike my other friends, he always had honest feedback on my hair. Like the time he told me it looked like a hairball a cat coughed up. In all fairness, it really did. I got it cut a few days later.

He struggled with speech. Sometimes he didn’t make a lot of sense. Often he said things that were inappropriate. And still, my time with him was always the highlight of my day.

He was my friend.

After waiting about 20 minutes, I approached one of his family members at the visitation to explain who I was and what a difference he had made in my life.

He looked at me sadly and said, “I wish you had known him 12 years ago.”

I get that a lot.

You see, families are always telling me that I should have known their family members before.  They tell me about all their loved one’s accomplishments and accolades (e.g., PTO president, city council, master’s degree, school counselor for 30 years). Then they look sadly at their loved one who is no longer able to brush their own teeth and say, “You would have really enjoyed her before.”

I want families to know that I don’t wish I had known your loved one before. I like the after just fine. When I am sitting with a person living with dementia, they are enough. No one has to prove to me that they are enough by giving me their resume. Here, in the moment, they are enough.

Last week, I took my adopted doggie, Carlos, to visit a memory care community in Wisconsin. It was a bit of an audition for him, and I’d say he passed. Many individuals were able to give Carlos a treat (so many that he had horrible gas that night) and pet him. Others weren’t in a place to be able to do that.

One woman living with dementia lit up when she saw Carlos. Carlos, always eager for pets if you make eye contact with him, hustled his furry self up to her wheelchair.

The woman’s daughter happened to be visiting, and she urged her mom (repeatedly), “Pet him, mom. You can pet the dog. Just pet him. He wants you to pet him.”

She was disappointed when her mom wasn’t able to reach out and pet Carlos.

I know it’s hard when a person who was previously able to do something is no longer able to do it. The daughter explained that her mother loved dogs and had owned many throughout her lifetime. In this moment, she saw loss. She saw a woman who previously provided care for dogs and was now unable to even pet one.

I didn’t see that loss. I saw a women who lit up when my little mutt approached her. It was enough for me. It made my heart full to see Carlos make her smile. It wasn’t enough for her daughter.

I’m not picking on families here….I have an advantage over families in appreciating the moment. When I look at someone with dementia, I don’t see the person that they used to be. I don’t see someone who used to be an eloquent professor but can no longer form a full sentence. I don’t see someone who was an accomplished hairstylist but can’t pick up a brush now. I don’t see someone who used to take care of everyone but now needs care.

I don’t see the loss. I see the person. When you don’t know the before, you don’t compare the before and the after. You just enjoy the after for what it is.

I’d love to tell you that I am confident person who has thick skin and is able to blow off all of her blog critics…but that’d be a big fat lie.

I’ve learned that when you put yourself out there on the internet, you should brace yourself for the response. As Forrest Gump said–Life is like a box of chocolates….you never know what you’re gonna get.

I am grateful that on most days I feel that the world is a kind place and people are thankful for my work. Many of you who subscribe to this blog and wake up to read it every Monday are way too kind, way too forgiving, and way too amazing to me.

When I first started writing Welcome to Dementialand, I had few but enthusiastic supporters (my mom, my husband, my friends CJ and Dana). I wasn’t sure if my supporters would continue to be limited to those who were related to me and/or had a history of spending evenings consuming adult beverages with me. I have been humbled that complete strangers (well, former strangers) have somehow found me in this crazy technologically-based world and continue to encourage me to keep writing.

This post is not to complain about the feedback I get because 95% of it is more positive than I deserve.

However, I have received some messages over the past few years criticizing me for portraying dementia in such a negative light. People have said that I overemphasize that dementia is progressive and fatal. (In my defense, I think research and awareness of dementia has been hindered by society’s lack of knowledge that dementia is progressive and fatal.) If I were to sum up these comments over the past couple of years, I’d have to say that there are a lot of people out there who see me as a Negative Nancy.

Interestingly, another common criticism that I receive is that I’m way too Suzy Sunshine. Some people have told me that I downplay the destruction that dementia causes. They tell me that I work too hard to shed a positive light on the lives of those living with dementia…when their world is getting dimmer and dimmer.

Sometimes the comments from both camps are thought-provoking and insightful. Sometimes they are just mean. You might have noticed that you can no longer make anonymous comments at the end of my blog posts. I’ve decided that you’re welcome to say whatever you’d like to me, but you need to own it–just like I own what I say.

So either I’m Negative Nancy or Suzy Sunshine. Strangely, I feel comforted that I receive relatively equal criticisms in each category. I guess they cancel each other out, right? Maybe I’m Natalie Neutral?

I can’t promise that I present a balanced view of dementia in every blog post. Sometimes I’m happy; sometimes I’m sad. I admit that is likely reflected in how I perceive the situations I encounter and the posts I choose to write.

I would hope that if you read this blog weekly you understand that I see the challenges encountered by those living with dementia but also the quality of life enjoyed by many diagnosed with Alzheimer’s, frontotemporal dementia, Lewy-Body, and other types of dementia.

There is no master plan to convince the world to perceive dementia in a more negative or positive light. In fact, there’s no master plan at all. You’re giving me too much credit if you think I’m pushing a calculated agenda.

I’m just a human being who spends a lot of time thinking and teaching about dementia. I am privileged to meet many individuals touched by dementia, and these people are kind enough to share their stories with me. A few years ago, I decided to write about it.

As I look back on my posts over the past three-ish years (which I don’t do often because I notice typos that bug the heck out of me), I think I’ve done a decent job of representing the good, the bad, and the ugly. And I will argue that there are plenty of each in dementia.

When people are diagnosed with a disease that causes dementia, I’m not sure that the diagnosis is always made in a way that acknowledges both the potential of someone living with dementia and the challenges encountered not only by the individual but by their care partners.

A lovely friend with younger-onset dementia sent me an email a couple days ago that ended with “Life is still good!” followed by a smiley face. In the same email, she acknowledged there are some “strange” things going on in her brain and that she recognizes she sometimes has gaps in time.

She says she’s still herself, but needs to reboot frequently, and I know that sending me such a long email probably took a lot of mental energy. And her mental energy is precious; she should get to spend it as she wishes.

She is not overly negatively nor overly positive in her perspective. She seems to be saying “I’m still me, but I know I’m changing.” I am in awe of her in so many ways.

She’s living with dementia.

And maybe life is different than before dementia…but it’s still life.

Too often, people who are diagnosed with a type of dementia are told to get their affairs in order. I’m all about planning, but there’s still life to be lived. And how do we support people in living their best possible lives with dementia?

As with any disease that is fatal, there’s something between diagnosis and death–it’s called life.

Not every day is going to be a good day, but not every day was a good day before diagnosis either.

So that’s my official viewpoint on negativity vs. positivity in dementialand. Yes, dementia is progressive and fatal. You’re gonna have good days and bad days. But life after dementia is life. It’s the same but it’s different.

Call me a Negative Nancy. Call me a Suzy Sunshine.

Just don’t call me late for dinner.

(I’m here all week.)

Anxiety makes thinking more challenging.

Last week was finals week at the university where I work. It’s stressful for students and faculty alike. In fact, the relief I felt finishing finals as a student pales in comparison to the relief I feel submitting finals grades as a professor.

In 25-ish semesters of college teaching, I’ve come to a few conclusions about finals. First, building up a final exam as something completely unique and exponentially more difficult than a “regular” exam doesn’t motivate students to study. In fact, it sometimes puts students in a mindset of “Why bother?” Their intimidation freezes them.

I often try to make a statement before the final to decrease my students’ anxiety. I remember a teacher in high school saying “No matter how you do on this test, I love you all.” I would probably feel a little silly saying that, so I sometimes say, “I don’t judge your entire worth on how you do on this test, and you shouldn’t either.”

What I know is that test anxiety leads to decreased cognition. If your anxiety is out of control, you forget information you know. You mix up terms. You can’t come up with equations and definitions. You wind up not doing well on a test not because you don’t have the knowledge to do well—but because your anxiety clouded your cognition. Our brains don’t work as well when they are stressed.

So why do people seem to be surprised when I explain the same concept applies to people with dementia?

Many cognitive functions—memory, logic, judgment, communication, perception, emotion-regulation—become more challenging as dementia progresses. These functions can become almost impossible to negotiate when we throw stress and anxiety in the mix.

Let me first say that some stressors are unavoidable. Whether or not you have dementia, stress is a part of our lives. If you are a care partner, please know that I am not blaming you for everything that gives your loved one anxiety; I understand that many things are not in your control.

Also, know that I am not judging you or being critical in pointing out some things that you may be doing cause unnecessary stress to someone living with dementia. In fact, I shudder to think of all the times I have (and continue to) create anxiety for those with dementia.

But here’s the thing…decreased anxiety leads to increased function. When someone is less anxious, they are more likely to remember, control their emotions, be capable of planning ahead, and practice good judgement. Think about it—it’s true for those of us without dementia as well.

I could come up with a long list of stuff I’ve done that probably increased anxiety in persons living with dementia. However, a few stick out to me…

(I am going to throw myself under the bus here, so promise me you won’t judge.)

I have a bad habit of simply repeating myself in a louder voice when someone with dementia doesn’t answer my question right away. And guess what? The louder I get, the more angry I sound. And when I sound angry—even when I am not—my friend with dementia is certainly not likely to be able to respond appropriately. Heck, I struggle to answer someone’s question when I think they are angry with me…why would people with dementia be any different?

Even though I repeatedly tell others to stop quizzing people with dementia, I once in a while find myself doing it. Last year, I sat down with group of individuals living with dementia right before Christmas and asked excitedly, “Do you know what holiday is coming up?” Very few people enjoy taking quizzes, but we throw quizzes at people with dementia all the time. Do you know who I am? Do you know what day it is? Do you remember our anniversary?

A quiz is like a cup of anxiety on a silver platter. Keep in mind that people with dementia aren’t necessarily having a good day if they pass your quiz. They’re having a good day if they’re safe and happy. Focus on that instead.

I’m always in a hurry. I move fast (literally). I have a way of bounding into a situation without giving someone a chance to process and identify me. We know that people with dementia struggle to perceive moving object. So stop moving. Stand still for a moment. Give their brain time to interpret what they see. When I move and invade someone’s personal space before they have an opportunity to identify me, I cause them stress. To be honest, I don’t like people in my personal space if they don’t know who I am either.

Another way we cause anxiety to people with dementia is by exhibiting anxiety. Long after someone can understand the words, “I’ve had a terrible day,” they can read the body language of someone who is stressed. And stress is as contagious as a stomach virus on a cruise ship. (To be fair, those of you who are care partners may frequently “catch” anxiety from your loved one with dementia. And then you give it right back….the gift that keeps on giving, right?)

I often tell people that “Emotion lasts longer than cognition.”

Here is what that means…

I cause someone with dementia stress by the way I approach or interact with them. Two minutes later, they may not recall why they are agitated, but they are still agitated. I can’t take back that anxiety once I inflict it on them.

I hear lots of terms to describe people with anxiety that make me cringe…we say they are “acting out”…we say they have “behavioral problems”…we often accuse them of “giving us a hard time.”

When I step back and look at the situation, I often see a person who is anxious. And, if I step back just a bit further, I often see the role that those of us without dementia play in that anxiety.

I’ve got a bunch of travel planned in the next month. Carbondale. Lake Geneva, Wisconsin. Atlanta. Indianapolis. Chicago. Those are all work-related trips, although I am certainly not opposed to turning them into dual-purpose business/pleasure adventures. I can find a winery anywhere, folks. I sniff them out like my dog sniffs out Doritos wrappers at the park.

If my math is right, I’ll be spending about almost half of the next month in a hotel. Well, several different hotels and one dog-friendly AirBnB near a lake that I’m super excited about.

I know there are plenty of people who travel more than I do. There are people who have jobs that keep them on the road almost every week of the year. Many of these people thrive living the road life…and maybe it feels like home to them. But I can’t relate.

Although I enjoy travel, I also feel a bit off when I’m on the road. I don’t sleep well. I wake up and it takes me a few seconds to remember where I am. I eat differently than I do at home, and my stomach gets mad at me. Staying in my routine isn’t possible. Sometimes I don’t get my workouts in, and that affects my mood. I always have just a little bit of anxiety about what I’ve forgotten to bring and might have to seek out–even though the pair of emergency black pumps I had to buy at the last minute at Target a few years ago have been my go-to heels ever since.

Twice in the last year, I have left my hotel room for the day and come back at night with absolutely no memory of what room I was in. The last time this happened, I went up to the hotel desk with a horrified look on my face.

“Lose your key?” the hotel employee asked.

“I have a key,” I said. “I have no recollection of what room that key goes to.”

Sometimes I can be kind of a mess when I travel.

Recently I spoke with a woman who is living with early-stage dementia. We had a conversation about how great it is to travel….and how great it is to get home after traveling. She related to my feelings about being “on the road,” and she told me that these feelings have only intensified as her dementia progresses.

Travel has become more stressful. The unfamiliarity of hotels, AirBnBs, airports, and Ubers breeds anxiety. She just finds herself frazzled and on edge when on the road.

Her husband is a great guy, and he wants to give her the world. By giving her the world, I mean take her on her “bucket list” trips–to Australia, Scotland, and the Grand Canyon.

Those trips would have excited her a few years ago, but now just the thought of planes, trains, hotels, and subways make her shudder. Yet, she appreciate that her husband wants to take her to the places she’s always fantasized about visiting.

“But I guess I can do it,” she said. “I won’t have a break down or anything. I can keep smiling and pretend it’s okay even if it gets bad. I don’t want to hurt his feelings.”

People with dementia are pretty amazing like that–and I don’t necessarily mean that in a positive way. They can smile and laugh when they are anxious, uneasy, and terrified. Sometimes they don’t want to upset things. Sometimes they work really hard to try to make us forget they have dementia.

I remember visiting with a friend whose husband had Alzheimer’s a few years back. Their daughter was currently living in South Africa doing missionary work. My friend told me that she wanted to take her husband to visit because she knew their time was limited. She talked about buying plane tickets for a couple months in the future. I wasn’t sure what to say.

Her intentions couldn’t be better. However, I knew that it was unlikely that this trip would be successful considering some of the symptoms her husband had been experiencing.

“I just feel like if we don’t go now, we won’t get a chance to go,” she told me.

I tried to gently guide her to consider some of the challenges of a long flight followed by a long train ride. I mentioned that it might be overwhelming for him to spend time in an unfamiliar environment. I told her that I realized her husband was using a wheelchair sometimes, and I wasn’t sure how accessible this region of South Africa might be.

She said she really wanted him to have an opportunity to see the meaningful work their daughter was doing.

There are times when I am way too blunt with people. And there are times when I am not blunt enough. Maybe this was a time when I was not blunt enough. Or perhaps it wasn’t my job to say, “Your husband doesn’t remember he has a daughter…I don’t know if a trip to another continent to see the difference she is making in the world is the best plan.”

But I didn’t push it.

She did buy two plane tickets. And two train tickets. He seemed increasingly confused as the date approached, so she invited her son to come along for support. She bought another plane ticket. Another train ticket. She made hotel reservations.

About a week before the trip, her husband became agitated and ended up in the emergency room. As it turns out, he had a urinary tract infection. She decided she couldn’t take him to South Africa.

If you are looking for a positive–which I was–the son did end up going and reconnected with his sister with whom he had not been close. I didn’t ask how much money they were out on the cancelled flights, train fares, and hotels.

I saw her a few months later. Her husband had declined and now lived in a nursing home.

“I was a real idiot thinking I could take him on that trip,” she said.

She wasn’t an idiot, of course. It was her love for him and her desire to give him this gift that made her overlook all the reasons why it wouldn’t work.

Please don’t misinterpret my message. I am not saying that people living with dementia shouldn’t travel. There are plenty of people with various types of dementia enjoying trips all around this world of ours. However, sometimes we need to reconsider what a person needs in order to be successful.

Maybe a long road trip isn’t ideal. Perhaps you could drive four hours a day for three days instead of driving 12 hours in one day. Someone who used to enjoy flying might now be stressed out by security procedures and being “trapped” on a plane for hours. Is a different mode of transportation more appropriate? How can you modify your travel plans to make things less stressful for everyone? Of course, there is a time when the anxiety of travel may outweigh the benefits of going on an adventure.

And when that time comes, recognize that a “stay-cation” might be the best option.

Today I am presenting my third in a series of lists.

I’ve decided that there are two types of people–people who love a good list and people who feel tied down and burdened by lists. I am the former.

In fact, when I wrote out my to-do list for today and “make a list” was at the top of the list I got pretty excited. I even enjoy listing about lists–how’s that for meta?

Today’s list is about stuff I’ve learned in this field. What has surprised me is that what I’ve learned from my interactions with caregivers and individuals living with dementia works in other settings as well.

What you learn in Dementialand doesn’t stay in Dementialand. This isn’t Vegas, after all. What I’ve learned in Dementialand migrates to my family and work life in some pretty significant ways.

What I Have Learned in Dementialand

1. It really isn’t that important that everyone knows you are right. And this is an observation from someone who always has to be right–as my husband points out (and as much as I hate to admit it, he’s right). This lesson doesn’t just apply to interactions with those who have dementia. Sometimes I have to bite my lip, be satisfied in knowing I’m right, and shut the hell up.
2. People living with dementia may have a different reality than I do, and who’s to say that mine is “correct”? We all see the world through our own lens and with our own biases. I don’t care who you are, where you live, or whether or not you have dementia…you have your own unique viewpoint of this world. And sometimes– when I step into someone else’s world and see the world the way they see it–I realize that their view of the world is a lot more positive and life-affirming than mine.
3. Two wrong are better than a right. That’s something someone with dementia said to me a few weeks ago. I’ve decided it’s my new mantra. Nope, two wrongs don’t make a right; they make something better.
4. Silence is okay. Sometimes people living with dementia struggle to keep up a conversation. As dementia progress, they may become non-verbal. Resist the urge to chatter endlessly. Know that being together is enough. This also works when you are on a long car ride and you’re sick of talking to your friend or family member. Don’t fight the silence.
5. Dementia isn’t funny, but some really funny stuff can happen on your dementia journey. I don’t know if laughter is the best medicine, but it’s a better way of coping than binge drinking. A lot of caregivers will say to me, “I know I shouldn’t find this funny, but….” Stop apologizing for using your sense of humor to get through.
6. You can have a friend and have no idea who they are. This is frequently the case as dementia progresses. Two women at a nursing home may take comfort in each other with neither knowing the name of or anything about the other. Then again, I felt the same way about a guy who I saw walking his German Shephard on the trails by our old house almost everyday for five years. No idea who this guy was, but my interaction with him was one of the best parts of my day. You’d think you have to know a lot about someone to consider them a friend, but maybe you don’t. Perhaps a smile and a positive word each day is enough.
7. I don’t get to decide if your dementia is a tragedy. I don’t get to define you as a “victim” or a “sufferer.” If you want to mourn having dementia, I have to allow you to do that. I’m not here to convince you it’s not that bad. On the other hand, if you tell me that you’re living well with dementia, I’m not going to argue. I’ll celebrate with you. I don’t get to define this journey for you…just like you don’t get to define the journey I’m on. You can’t write the discourse for someone else’s life.
8. If you judge a conversation by how much sense it makes, you’re not appreciating the best conversations. I realized this when I was having a delightful conversation with a woman about how the peas that had fallen off her plate were running away from home. I’m totally left-brained, list-loving, logical, and data-driven, and it’s taken me a long time to get to the point where I can say this….but sometimes making sense is over-rated. I’ll take a pleasant conversation over one that is logical any day of the week.
9. Most stuff really is okay. I mean, if Grandpa wanders out the front door into a busy road, that’s not okay, but it’s okay if he tells the same story a dozen times, if he calls you by the wrong name, if he forgets to put the clothes in the dryer for a few days, if he doesn’t take out the trash. It really is okay. And that reminds me that I’d better stop freaking out if I’m occasionally five minutes late to a meeting, if it takes me a few days to answer an email, or if I accidentally eat seven cookies when I promise myself I won’t have even one. That laundry I haven’t put away in the last week? It’s okay. My mom’s birthday gift arriving a day or so late (sorry, Mom, and happy birthday today!), it’s okay. Besides, my mom would worry I’d outsourced the task if her gift arrived on her birthday.
10. You can’t predict who your heroes are going to be. When you’re going through a crisis, sometimes the people closest to you–the people who you expect to be there–disappear. And sometimes these people who you barely know, or maybe you haven’t seen in years, just step up and help like it’s the most natural thing in the world. Focus on these people rather than those people who disappeared. Look at who’s there rather than looking for who’s not there.
11. If you want the world to think you’re busy, wear your hair in a ponytail. A guy with dementia told me that when my hair was in a messy ponytail. Now whenever someone at work asks to take on a new task when I have my hair in a ponytail, I feel more confident in telling them that I’m just too busy. Beware the ponytail, colleagues.
12. Ask the dang question. We often over-complicate the questions we ask people with dementia. We do too much explaining. We explain why we are asking the question. We explain whether we think they should say yes or say no. They get so lost within the question that they’re unable to come up with a response. Instead of saying, “Mom, I am noticing it’s cold in here since I turned off the fireplace and wondered if you wanted an extra blanket for tonight, but I’m not sure if you’ll be too hot once you get laid down. I guess I could adjust the heat if you’d like. What do you think?” simply ask, “Mom, would you like a blanket?” I’m still working on this. I started a question at a work meeting this week by saying, “I’m not sure if anyone has thought of this but you probably have since we’ve been having this discussion for months now and you all have great ideas, so I’ll go ahead and ask even though it’s maybe a bit misguided…” Ask the dang question, Elaine.
13. Sometimes life is about making the “least bad” choice rather than the best choice. Dementia (or any type of illness), financial situations, and family dynamics interact in a way that can be pretty tricky. Sure, maybe we’d like to quit our jobs to care for our loved ones with dementia. For most of us, that’s just not realistic. It’d be great if we could hire registered nurses to be in our home 24/7 to provide care for someone with end-stage dementia, but that’s not happening for the majority of us commoners. That daughter who chose to place her mother in a nursing home? Don’t judge her. That was probably her “least bad” choice. She didn’t want to do it, but the other options were even less appealing.
14. The days you expect to be really bad usually are only about 25%-50% as bad as you expect. There’s no data behind that percentage, but it’s what my friend Drew says and she’s pretty smart. It’s the days you don’t see coming that will really get you.

So that’s it. Or actually it’s not. I’m sure I could come up with a lot more, but I won’t. Instead, I’ll leave it up to you.

If you can think of any dementia lessons that have impacted you significantly, tell me about it in the comments below.

Today I’m talking about how to modify your home to make it more dementia-friendly. I’m not focusing on million dollar makeovers. We are talking cheap and simple. I’m nothing if not realistic, folks.

If you are negotiating the early stages of a dementia, I know that some of these ideas might seem extreme to you at this point. I understand that not every tip on my list will work for every individual and every home, but my hope is that it will serve as food for thought–and that it will help you come up with additional ideas that will benefit you and your loved one. If you have advice that you’d like to share, I encourage you to put it in the comments below.

Tips for Dementia-Friendly Homes

1. Remove the rugs. Rugs increase the risk of falls for those with dementia–and for the rest of us, as well.
2. Let the light in. During the day, keep the curtains and blinds open to encourage wakefulness, but be aware that glare might be disorienting to someone with dementia.
3. Avoid overly-patterned carpet, wallpaper, furniture, curtains, shower curtains, and bedspreads. As dementia progresses, busy patterns contribute to visual overload and can be perceived as dead animals, bugs, dirt, etc.
4. If mirrors become confusing for a person with dementia, cover or remove them. You may want to consider placing curtains over mirrors so they are still easily-available when needed.
5. Consider whether locks should remain on internal doors. If a person with dementia accidentally becomes locked in the room, this can quickly turn into a crisis.
6. Keep in mind that shiny floors that reflect light may look wet and slippery to someone with dementia.
7. Store medications in a locked cabinet to avoid an unintentional overdose. Keep in mind that an overdose can happen with a prescription medication or also with a common over-the-counter medication like Tylenol.
8. Place house cleaning chemicals where they will not be accessed by someone with dementia. We often talk about teenagers eating Tidepods, but people with dementia have ingested them as well.
9. Lower hot water temperatures to prevent scalding. The recommended maximum temperature is 120 degrees Fahrenheit.
10. Use nightlights in hallways and especially in bathrooms. Motion activated lights may also be useful.
11. If your loved one has trouble finding the toilet at night, try to place the bed so the toilet is visible.
12. Keep the counters clutter-free. Only leave out items that are used frequently.
13. Do seasonal closet rotations so a person with dementia only has seasonally-appropriate clothing available.
14. Consider placing a noise-maker (like some jinglebells) on selected doors so you know if they are opened or closed by the person with dementia.
15. Keep devices like cell phones and remote controls in a consistent place.
16. Think about installing deadbolts either high or low on external doors to discourage wandering.
17. Frequently check for and dispose of expired and spoiled food. Label leftovers with the content and date. Place foods that need no prep in the front of the fridge for easy access.
18. Install a high quality, sturdy grab bar or two in the shower or bath. Make sure the bar is a contrasting color to the surface to which it is attached.
19. Put items like a hairbrush, toothbrush, and toothpaste in a visible place to encourage a person with dementia to be independent in self-care.
20. Make sure chairs have sturdy armrests to provide support as individuals sit down and stand up.
21. Get rid of your guns–or store them in a safe. Promise me you won’t ever assume that Grandpa won’t mess with his hunting gear.
22. If someone struggles to use the stove safely, considering removing the knobs that control the stove. You can also unplug the oven for safety reasons.
23. Lock up or limit access to equipment like snow blowers, lawn mowers, and weed wackers.
24. Keep internal doors to frequently-used rooms like bathrooms open. Keep doors to less frequently-used rooms like spare bedrooms closed.
25. Stacks of unopened mail and unpaid bills may be stressful for someone with dementia. Keep these piles of “unfinished business” out of sight.
26. After a person can no longer drive, keep car keys in a place where they are not accessible.

As I review these, I realize that many sound like safety tips…but creating a safe environment is key in assisting people with dementia in maintaining their independence. Individuals who occupy spaces that are safe are able to stay in those places longer–so safety promotes independence.

Sometimes it feels like we are treating Grandma like a child when we hide away cleaning supplies and unplug the stove. However, when this becomes necessary, these steps allow Grandma to continue to function without us hovering around her all the time.

Finally, I want to take this opportunity to tell you about something related that makes my gerontologist heart happy. A professor of interior design at our university (who happens to occupy the office right next to mine and is absolutely delightful) understands how important the environment is to people with dementia. I have visited her class to teach about dementia and how affected individuals perceive their environment, and she has even created an assignment where students design a dementia-friendly space.

Thank you, Dr. Gowri Betrabet Gulwadi, for educating your interior design students on dementia and for your efforts in advocating for the creation of spaces where people with dementia can be successful and independent.

One of my blog readers recently asked me if I could make some simple lists of dementia tips. At first, I didn’t think it was a great idea.

To be honest, I feel like the reader base for my blog is beyond simplistic lists. I feel like those who open their inboxes on Monday morning and see a new post expect more depth and insight from me.

Then my blog reader said, “Oh, this really wouldn’t be for me. It would be something that I could post at my mom’s nursing home and send to my family before Christmas. You know, it’d be for people who don’t get it.”

Ah, I get it. And I’m all in on that idea.

So here goes my first simple list of dementia tips….

Tips on Communicating in Dementialand

1. Connect, don’t correct. I have seen many families be so insistent on making sure their loved one knew they were wrong that they destroyed their ability to have a positive interaction.
2. Don’t assume someone with dementia is hard of hearing. Sometimes when you raise your voice, you sound angry.
3. Be comfortable with silence. It takes someone with dementia longer to process what you say, so give them time to respond before you answer for them.
4. Stay out of their face. Sometimes when someone isn’t responding, we get closer and closer–so that our face is right in their face. Be careful with this approach…it can make someone feel boxed in and intimidated.
5. As dementia progresses, it’s okay that conversations get shorter. Keep in mind that conversations can deplete the mental energy of someone with dementia. If they can stay focused on a conversation for a short time, appreciate that short time.
6. Body language and facial expression increase in importance as dementia progresses. When people lose the ability to understand language, they often retain the ability to understand non-verbals.
7. Never talk about someone with dementia as if they are not present. Always assume someone can understand more than they can express.
8. Give step-by-step instructions. Instead of telling someone to brush their teeth, start with “Let’s go to the sink.” Then say, “Pick up the toothbrush.”
9. Make sure your loved one is using any aids he or she needs. This sounds silly, but we often forget to make sure individuals are wearing their glasses or hearing aids. Compromising someone’s sight or hearing makes communication unnecessarily difficult.
10. Minimize competing stimuli. Turn off the TV. Shut the window if you are next to a busy street. Set your loved one up for success by allowing them to focus on the conversation.
11. As dementia progresses, considering minimizing open-ended questions. Instead of asking, “What do you want for lunch?” ask “Would you like soup or a turkey sandwich?”
12. Avoid “non-question” questions. Don’t ask, “Do you want to take your medication?” if “no” is not an acceptable response. Say, “It’s time to take your medication.”
13. Consider the timing of visits and conversations. If you would like to have an important talk or quality visit with someone who has dementia, think about what time of day will work best. If a person usually takes a nap around 2 pm, they are not likely to be at their best if you stop by at 1:45.
14. Don’t judge a conversation by whether or not the content makes sense. Judge a conversation by the connection.
15. Remember that you can still have a pleasant conversation with someone if they don’t remember who you are. Stop arguing about your identity and relationship to the person with dementia.

Tune in next week…when I provide another handy-dandy dementia list that you can show your friends and family who don’t really get it.

When Don, who had Alzheimer’s, moved into a nursing home, his family worried about one thing above all others…how he might get along with a roommate. He was known for being cranky, and his crankiness had only increased as his dementia progressed. They didn’t see their dad doing well sharing a room, but they didn’t have the finances for a private room.

On moving day, Don’s family showed up with his most prized possessions: a Green Bay Packers blanket, an autographed photo of Reggie White, and a couple of framed Packers posters. They placed his Packers t-shirts, sweatshirts, and baseball hats in his closet. Oh, and the jersey he always wore on gameday–the one he called his “lucky jersey”–hung in the back of the closet. They’d have to explain to the staff that it wasn’t for everyday wear…just Sundays during the season.

At first, Don didn’t have a roommate. An empty unmade bed sat on the other side of the room. His family was told someone would be moving in at some point. They hoped he could continue to pay for a double and live in a single as long as possible.

After a month or so, Joe showed up. Joe, who also had Alzheimer’s, happened to be African-American. (Don was white, and his family had heard him make some racist comments under his breath as his dementia progressed.) Don’s family remembers seeing Joe and his family arrive in the room and worrying that there might be an issue based on race.

Except there was one thing that made them think the situation might be okay…Joe was wearing a Packer’s sweatshirt and hat.

Don took a look at him and said, “Packers?”

Joe smiled slightly and responded, “Packers.”

Don nodded.

And things were okay.

Actually, they were better than okay. Don’s family referred to his relationship with Joe as a “bromance.”

They didn’t talk much, but it was football season. On Sundays, Don would roll his wheelchair over to Joe’s side of the room to watch the NFL. Their families soon realized that neither was aware of whether the Packers were actually playing or not. To them, every game was a Packers game. Sometimes college games on Saturdays were even Packers games.

Once in a while, one of them would mention a Packers player who had retired decades ago and say that they had made an impressive catch or tackle. The other would nod in agreement.

Sometimes a staff member would come in and find them sitting together looking at a blank TV screen conversing as if they were two football-obsessed guys in their basement watching the NFL. Don’s daughter often bought them Pepsi from the vending machine. She was pretty sure they thought they were drinking beer.

Joe’s health suddenly declined, and he seldom got out of bed. Don would still roll his wheelchair over to Joe’s side of the room to watch games. Joe didn’t open his eyes, but sometimes nodded when Don cheered or reacted to a play (which the Packers or any other random team had made).

One day, Don’s family was surprised to see he had placed his Packers blanket over Joe. Another time, he presented his lucky gameday jersey to Joe’s son and indicated he wanted Joe to wear it. It actually moved Don’s daughter to tears.

Joe passed away after living with Don for over a year. Don’s family worried that Don would miss him, and yet they found it sad when he didn’t.

It was as if Joe had never existed to Don.

Don went back to contently watching his Packers games (or the non-Packers games that he thought were Packers games) alone. He never asked about Joe. To the relief of his family, the nursing home didn’t move in another resident. Don’s family remains grateful to Joe for giving their father what they call his “final bromance.”

And they like to tell people that sometimes the only thing that really matters in friendship is that you root for the same team.

Every once in a while, I find my married and childless self at some sort of a gathering where a stranger attempts to make small talk and throws out the question, “So….do you have a family?”

I’ve always wanted to answer by saying “Me? Nope. No family. I was raised by wolves in the forest. I only learned to walk upright a few years ago.”

However, to be fair, the wolves in that scenario would be family.

Here’s the thing. I do have family. I have a husband. I have a mother and step-father. I have in-laws. I have the type of friends that are without a doubt family. And I’ve got three dogs and two cats.

If you want to know if I have kids, the answer is no.

But in our society, we tend to focus on parents with young children when we use the term family. And workplaces with family-friendly policies may not always be accommodating of other family situations.

Case in point…

A woman who I will call Cassie took a new job, which touted family-friendly policies like flex time. This appealed to her because both of her parents have dementia. After a few weeks on the job, she sat down her with supervisor to negotiate the details.

“Oh, flex time?” he said. “That’s really designed for parents with young kids.”

Cassie explained to her supervisor that her parents had dementia, and she struggled to balance work and caregiving.

“Don’t you have any siblings?” he responded.

Not surprisingly, her tenure with this company was short-lived.

People tell me that they watch their co-workers adjust hours to accommodate picking up and dropping off kids at childcare. They tell me that taking off on a moment’s notice to take a sick child to urgent care is met with understanding. However, having to leave in a hurry because your mom at the nursing home is having anxiety and can’t be consoled is met with confusion. Can’t the staff deal with it? Can’t you just go after work? Is it really a crisis?

Caregivers in this country aren’t just caregivers. They are often employees as well. When we talk about changing workplace policies to allow women to succeed as both mothers and employees, we are missing an entire group of women—middle-aged women at the peak of their careers who take on caregiving responsibilities for parents (or aunts, uncles, etc.).

Does this impact men? Absolutely. Yet, even though women have made tremendous strides in the workplace, they are still responsible for the bulk of childcare and eldercare in the United States.

I spent about an hour this morning browsing online the policies of organizations that claim to be family-friendly. The policies themselves promote the idea that “family” ends when the kids leave home. (And that if you are childless, like I am, that you don’t have a family.)

You will find a few scenarios mentioned frequently. And these scenarios are valid. The single mother who has to leave work a bit earlier because there’s no one else to pick up the kids from school. The involved parents who want to attend their kids’ school events even though they are during the work shift. Maternity leave. Even paternity leave. Leave for parents who adopt. Gradual return to the workplace for new parents. Lactation rooms. Discounts on childcare. Obviously, I see these policies as positive. But we are missing something.

There is little mention of mothers who care for their 25-year-old sons who have cancer. Or, alternatively, 25-year-old sons who care for their mothers with cancer. There’s little mention of caring for adult family members with mental illness. In addition, we tend to limit accommodations to caring for those who are related by blood or legality. Maybe you’re caring for a close friend who has dementia. They’re not family to your workplace, but they’re family to you.

With the aging of the Baby Boom generation and the predicted increase in the number of individuals impacted by a dementia, we have to do better. In a perfect world, we would have the option to quit our jobs to care for ill and aging loved ones. This is not a perfect word. People have to work…and choosing between work and caregiving isn’t an option.

Happy Monday!

Last week I was invited to be on a podcast called Half the Story to talk about Alzheimer’s and other dementias. On the podcast, you’ll hear me discuss:

• why I hate most hotel carpet,
• how my friend Drew taught me that dementia care is similar to improv,
• the important (and rarely discussed) role that mental fatigue plays in dementia,
• common misconceptions families have after diagnosis,
• how you can train your brain to cope more positively with the changes that occur in dementia, and
• why I rarely use the seven stage model of dementia you might see elsewhere.

Thanks, Andy, for having me on Half the Story!

Here is the episode in its entirety:

https://www.youtube.com/watch?v=VMduPRJ4p3k&t=3700s