When Dementia Knocks

This is the third in a series on dementia and the senses. Today we discuss smell. (This is an adaptation of a post originally wrote a few years ago.)

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 how it might impact smell, in particular.

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.

I’ve been writing posts that highlight non-memory symptoms of dementia.

Over the next five weeks, I will discussing sensation and perception. Five weeks, five senses, right? We will talk about how dementia impacts how a person experiences the world.

Today we will focus on hearing. If some of this is familiar, it’s adapted from a post I wrote in 2016.

Like many spouses, my husband occasionally points out my weaknesses. Like many spouses, I often become defensive when my husband points out my weaknesses. However, he did once (and only once, obviously) note a weakness that I realize is valid.

Here goes…

I’m okay at explaining something to someone for the first time. My weakness is re-explaining it when they don’t understand my original explanation.

Let’s say I’m explaining a concept to a student. Maybe I’m talking about the genetics of Alzheimer’s. Perhaps I use language that the student just isn’t able to understand.

“I don’t get it,” says the hypothetical student.

Here’s where I go all wrong…I struggle to understand what exactly the student isn’t understanding, and I explain the genetics of Alzheimer’s again–using the same language and the same examples–except in a much louder voice.

Here is my weakness: If someone doesn’t understand what I’m saying, I just say it again…in a louder voice.

I tend to think that my original explanation was so clear that the only reason the other person would need clarification is because they have a hearing problem. If you are thinking that I overestimate my own eloquence, you may have a point.

Chances are that I used a loud voice in the first place (no one has ever complained that my voice isn’t loud enough), and chances are that the person doesn’t have a hearing difficulty. It’s likely that my explanation isn’t resonating with them for some other reason. Yet, I just repeat the same explanation that doesn’t resonate–but louder. It’s not helpful.

My weakness tends to extend beyond explaining concepts to college students. If something I say doesn’t make sense to my husband, I’ll just say it louder to clarify. I know it’s not productive, but I do it anyway. If I’m at a work meeting and make a statement that results in quizzical looks from my colleagues, I usually just repeat the statement again. And I step up the volume, of course.

Unfortunately, I do the same thing to my friends with dementia. If I ask someone with dementia a question and don’t get a response when I expect one, I figure they didn’t hear me, so I ask again in the exact same way–except louder. And, I will add, that my louder voice probably also conveys irritation even if that’s not my intention.

People with dementia may have hearing difficulties due to age or other factors, but dementia itself doesn’t impact your ears. However, it does impact how you interpret auditory data.

Sometimes I forget that people with dementia need a bit longer to process any question I ask. I have to force myself to silently count to ten as I wait for a response. After ten seconds, I force myself to rephrase (not just repeat) the question. Maybe I use more hand motions or pointing. Maybe I use a different word for an object. I change something…something other than the volume.

People with dementia often have trouble focusing on the important auditory information and blocking out the rest. While I may be able to have a conversation with the TV turned on, someone with dementia typically finds it easier to focus on our conversation with the TV turned off.

When a person with dementia is struggling to have a conversation with me, I look for extraneous auditory data that can be eliminated. Can I shut the door so we can’t hear the conversation of the people in another room? Can I close a window so the noise of the cars driving down the street isn’t a distraction?  Can I turn off the washing machine temporarily so my voice doesn’t have to compete with the swooshing noise?

It’s not that the person with dementia can’t hear over these other sounds. This isn’t a matter of volume. It’s that their brain has to work hard to distinguish important auditory data from unimportant auditory data. They may become tired or overwhelmed after trying to do this for a short time, and we may perceive this as disinterest.

Once I was sitting in a nursing home lounge talking to a man with Alzheimer’s disease. I was struggling to get a response from him. I was likely repeating my questions and increasing my volume. As my attempts at conversation were failing, there was very faint knock from down the hallway. It was a visitor giving a quick tap to a resident’s door before entering their room. I could barely hear the knock and probably wouldn’t have noticed it had the man I was visiting with not responded to the noise.

“Come in! It ain’t locked!” he yelled.

If he could hear that noise, his hearing was obviously not an issue. I closed my eyes for a second and did a quick survey of auditory information.

In the distance, I heard some chatter at the nurses’ station. There was some incessant beeping from residents who had pressed their call buttons for assistance. The window air conditioner in the lounge was making a rattling noise. I could hear the shuffle of nurses’ aides hustling from room to room, and a couple of residents across the lounge seemed to be having a conversation about the weather.

A few moments ago I hadn’t been hearing any of this noise. Sure, I was taking in the auditory data, but my brain was disregarding it in favor of focusing on the conversation I was having. This wasn’t intentional on my part. I did not have to plan to block out all of these extraneous sounds. My brain did that for me automatically.

My conversation partner, who had dementia, was not so fortunate. It’s not that he wasn’t trying to be engaged in our conversation. It’s not that he didn’t care about what I was saying. It was that his mind was not perceiving what I was saying to be any more important than the slightly obnoxious hum of the air conditioning unit.

When we enter Dementialand, we need to set individuals with dementia up for success. In this particular situation, I had not done that. I had asked this man to have a conversation with me in an environment in that was not conducive to the dementia brain. Increasing my volume was not going to help; in fact, a louder voice would likely convey an intensity that would discourage rather than encourage a positive response.

Once I was talking to a woman who had vascular dementia after a series of small strokes. I asked her a question. When she didn’t respond I went to my default next step…I asked her again…only louder. Much louder.

This time she made eye contact with me. She motioned for me to come closer. I figured her voice was weak, and she wanted to make sure I could hear her responses. I put my ear close to her mouth.

“I can hear you!” she yelled in my ear. “I’m not deaf, honey! Stop shouting!”

I guess I deserved that. Apparently this woman would agree with my husband’s assessment of my weakness.

Louder is seldom better.

And I’m a work in progress.

To function as a member of society, it’s necessary to have the ability to sometimes stop yourself from doing what you really want to do.

You had an urge to call your co-worker a jerk, but you stopped yourself. (If you work with me at the university, this is totally hypothetical. It’s not like I’ve ever experienced the urge to call you a jerk…just an innocent example…you believe me, right?)

For a fleeting moment, it occurred to you that you get away with stealing something from Target. Of course, you paid for it. You’d never steal it, obviously; it was just a thought that crossed your mind.

You liked what your friend ordered for dinner more than your own meal. You wanted to grab her plate. But you didn’t.

Let’s be honest…sometimes we get frustrated and we want to punch someone. I’ve only punched someone once in my life. (It was at a water park and he totally deserved it; feel free to ask me about it sometime.)

And that’s the only time I’ve ever had the urge to punch someone.

Okay. That’s a lie. I’ve had that urge plenty of times. I’ve only acted on it once.

To say that impulse control is important is an understatement.

There’s a part of your brain that’s responsible for impulse control. It’s called your frontal lobe.

I’d like to thank my frontal lobe. Without it, I’d have no job, no marriage, and no friends. I would have eaten myself to death on frosted sugar cookies with sprinkles, and I’d probably have adopted 19 dogs.

The frontal lobe is impacted by various types of dementia. It is often the first part of the brain that shows damage in frontotemporal dementia, which is why uncharacteristic behavior (e.g., physical and verbal assault, sexual comments, stealing) is many times the first symptom that families notice. However, lack of impulse control is a symptom in other types of dementia as well.

I was visiting a memory care community recently when a man living with dementia started making a high-pitched screeching noise. I was trying to have a conversation with another resident, and I’ll admit the noise was distracting. I was trying to block it out and focus on my conversation.

The guy I was talking to told me to hang on a second. He got up and walked over to the man making the noise.

He bent down and got in his face. Then he said in a very stern voice, “YOU. NEED. TO. SHUT. THE. HECK. UP.”

Except he didn’t say heck. He didn’t even say hell.

I’ll let you take a guess.

I hate to say this–because I’m not going to make myself sound like much of a caring professional–but I wanted to walk over to the man and say the same thing. I knew it wasn’t his fault he was making this noise. I wanted to be patient.

But it was hurting my ears.

My frontal lobe stopped me from doing that.

Again, thank you, frontal lobe.

Residents who take food off other residents’ plates at nursing homes? Those guys at the nursing home who make inappropriate comments to me about my body? People with dementia who shout out whatever comment crosses their mind–whether nice or not so nice?

It’s likely their frontal lobe is damaged.

I’ll tell you another secret about the frontal lobe. It doesn’t function as well when your brain is tired.

That’s true for me. It’s true for people living with dementia. And it’s true for care partners.

If your loved one has dementia, you might be able to cope with being asked the same question dozens of times–when you’re well-rested. But after a long day of stress, you might snap. I know it’s not always possible to take a break, but you need one.

As I’ve said before in my blog, we don’t talk enough about mental fatigue when it comes to dementia. A tired brain doesn’t work as well. That’s a truth we all know…we’re not at our sharpest when we’re exhausted.

If someone with dementia is tired, they may struggle with impulse control more than typical. And then we often respond with frustration and anger, which is about as effective as getting upset with someone who has lung cancer for coughing.

We tend to think dementia is just about memory loss.

It’s not.

 

 

 

We eat to live.

But food is more than fuel. Food has strong ties to family rituals, celebrations, and emotions.

Food is love. I’m thinking of a time, over 15 years ago, when my long-term boyfriend dumped me like a bad habit. Food started arriving in the mail. My mom send Red Vines licorice. My dad sent Mint Milano cookies. My friend Erin sent Mint Milano cookies. I really like Mint Milano cookies.

I don’t know if any of them actually said, “I’m so sorry, and I love you.”

They didn’t have to.

Food ain’t just food.

When a loved one living with dementia experiences a change in their preferred food, eating habits, and meal routines, we often struggle to adjust–sometimes because our family routines have to be modified.

I get asked a lot of questions related to appetite and food. First of all, yes, dementia can cause someone to eat more. And dementia can cause someone to eat less.

A person living with dementia might lose or gain a significant amount of weight. They often become more finicky about what they eat, but some individuals become less discriminatory and start eating foods they’ve disliked their whole lives–or even things that aren’t food at all.

Someone I know had to make the decision to help her husband with frontotemporal dementia move into memory care when she caught him eating a marble. Individuals living with dementia have been known to drink cleaning solution and eat Tide Pods. Obviously, people who are prone to eating non-food items need intense supervision and a carefully controlled environment for their safety.

Because the impacts in this area of life can be so diverse, I made a list of some of things to consider when thinking about dementia and food:

• People living with dementia might forget to eat. As individuals are less able to keep track of time, they might not recognize it’s time for a meal.
• People might be unable to purchase food or forget to do so. There might be little at their home to eat.
• Someone living with dementia might forget that they have eaten. If Mom doesn’t remember having breakfast, she might have a second breakfast. And then a third.
• Dementia impact visual perception. A person might struggle to recognize the food in front of them. This is especially true if the food is the same color as the plate.
• Dementia affects the senses, including taste. Food may be tasteless to individuals with dementia. Or perhaps the taste is just…off. If you have a loved one with dementia who insists you messed up a recipe that you’ve made for years, it may be that their tastebuds are not interpreting flavors like they used to.
• As dementia progresses, people living with dementia tend to prefer food that is sweeter and sweeter. This is a tendency and isn’t true for everyone, but it’s common that a person with dementia will start putting honey, jelly, or sugar on food (even if that food is not typically a sweet food). A former nutrition professor at the university where I work had Alzheimer’s. Her family found it ironic that she started putting copious amounts of honey on green beans, hamburgers, and spaghetti.
• Those with dementia are prone to food poisoning because they may not remember how long something has been in the fridge. In addition, their sense of smell might have changed, so an offensive smell that would typically signal something rotten doesn’t stop them.
• Medications can change a person’s appetite. It’s also common that a medication can leave a persistent metallic taste in one’s mouth. If you notice a change in eating habits, consider any alterations to a person’s prescriptions.
• Mouth pain or dentures that don’t fit well might cause a person to eat less or stop eating. A person with dementia might not be able to express this to care partners.
• As a person’s level of activity decreases, their appetite often decreases. If it’s possible to encourage exercise, you might see that a person is willing to eat larger portions.
• As with all of us, we eat more when we sleep less. And we eat less when we sleep more. If Grandma can’t sleep because of restlessness induced by dementia, she might snack throughout the night, leading to weight gain. If someone with dementia sleeps 18 hours a day, they are probably eating limited calories.
• Sometimes a person with dementia might struggle to use a spoon or fork. While we often transition to assisting them in the process of eating, finger foods can be a great way to allow them to maintain a bit more autonomy.
• As end stage dementia approaches, people may struggle with swallowing. This causes some people to be reluctant to eat. A speech-language pathologist can assist and help to prevent aspiration.
• At the end of life (due to a dementia-causing disease or another cause), people lose their appetite as their body becomes less able to process food. This is a natural part of the dying process, and dementia experts do not suggest a feeding tube in the vast majority of cases.

From a young age, culture dictates to us that food means love. We show our affection for people by feeding them. We get together with people we care about for meals and celebrations. When we express our care during an illness or after a family member’s death, we send a casserole–at least here in Iowa. In Minnesota, you’d call it a hot plate.

We show love by pushing food at people. When we don’t know what to say, we bake a cake. In my case, that’s a cheesecake. It’s the only type of cake I know how to make from scratch.

Unfortunately,  we often have to let go of that definition of love with dementia. We have to accept changes in food preferences…and, in the end, we have to accept (reluctantly) that person no longer needs food in the way that they once did.

Hospices will discourage families from forcing a loved one at the end of life to eat. In my experience, this can be challenging for families. How can you not feed someone you love?

In summary, dementia impacts appetite. It can impact food preferences. It can impact swallowing and the fine motor skills required to feed one’s self.

Yet…

Many of us still think of dementia as just memory loss.

 

 

 

LOUDER. FOR THE PEOPLE IN THE BACK.

There’s more to dementia than memory loss.

As part of a series of posts focusing on symptoms not related to memory, I’ll be talking about gait changes today.

So what is gait? Gait is manner by which someone walks.

And dementia can absolutely change how a person walks (and moves in general). It almost always does….sometimes even before a diagnosis. In fact, if you have a loved one with cognitive issues, you should also mention any changes in walking and movement at a doctor’s appointment.

Maybe you’ve noticed that they shuffle.

I often hear the word shuffle in reference to dementia. The dementia shuffle. Maybe the Alzheimer’s shuffle or the Parkinson’s shuffle. A slow walk characterized by short steps. Frequently the gaze goes to the ground rather than the horizon.

However, not everyone’s gait changes in such a predictable way.

A man recently told me about his father, Ron, with Alzheimer’s who started limping as if he had an injured foot or sprained ankle. When asked, Ron said there was nothing wrong with his foot. He was fine. And he was walking fine. The limp was dramatic enough that his son took him to the family doctor.

The doctor sent him for X-rays, which turned into a stressful experience for Ron. In the end, they didn’t find anything wrong with his foot.

Ron’s son told me that his dad continued to walk this way for the next year or so when he moved toward end stage Alzheimer’s and couldn’t walk at all.

It always bothered Ron’s son that he couldn’t figure out what was wrong with his dad’s foot.

I asked if it seemed like he was in pain when he walked. He didn’t. And he continued to insist his foot was fine and there was nothing wrong with the way he walked. He didn’t know that he was limping at all.

Perhaps there was something wrong with the foot. Maybe there was an injury that Ron couldn’t express and didn’t show on the X-ray or physical exam. I appreciate that they checked it out.

But after hearing about the situation, I don’t think there was an injury. I think the limp was caused by dementia.

Your brain is the control center for your body. When your brain falters, it struggles to give your body adequate cues to move in the way that it’s moved in the past. The missing connections differ from individual to individual, so gait changes occur differently in each person.

If you know one person with dementia, you know one person with dementia, right?

Our brains are unique when they are healthy. And when they falter, they falter in unique ways–even for people who share a diagnosis.

Sometimes people with dementia lean to one side or lean forward when they walk. Sometimes they no longer swing one or both arms. Perhaps they consistently take a big step with the left leg followed by a tiny step with the right leg. One person I know told me that their mom walked like she was “out of alignment” and shifted in one direction.

It’s likely that people with dementia walk more slowly and require more focus and concentration in moving. They may struggle to talk while they walk because walking is a task that requires all of their cognitive focus. They may lose track of where they are intending to walk because walking itself takes so much mental (and perhaps physical) energy.

Recently I almost lost my cool (and I would’ve except I’m working on being more thoughtful before I react in the New Year) when I saw a nurse aide scold a resident with dementia for “dawdling” on her way to the dining room. I wanted to cheer for the resident when she yelled back, “This is as fast as I go, mean lady!”

To my disappointment, the aide then grabbed a wheelchair and practically shoved the resident into it because “we don’t have time for you to drag your feet.”

It was ironic because in this case the dragging of feet was a symptom of dementia. The aide was saying…we don’t have time for you to have dementia.

Although I know nursing homes are understaffed and aides have a lot to do, I wanted to explain to the nurse aide that a nursing home is not the right place to work if you get frustrated by slow-moving folks, and these slow-moving folks are hustling–even if it’s not always apparent to an outsider.

If your gait has changed due to dementia, berating you like you’re a middle schooler slacking in gym class isn’t helpful. You’re not going to move faster because I scold you.

Sometimes we think there is something wrong besides an existing dementia diagnosis when changes are related to movement and body. We are told that dementia is about the mind. It’s about forgetfulness. It’s a cognition thing.

We aren’t told about the connection between connection and movement. When the brain doesn’t work efficiently, it loses the ability to control the body.

My husband’s grandfather passed away of Alzheimer’s. I once asked my mother-in-law if she knew what Alzheimer’s was when he was diagnosed. She said no–that she just thought he’d get really forgetful and maybe have to live in a nursing home someday. She didn’t know he would die from it, and she certainly didn’t know about the symptoms other than memory loss.

The lack of education and resources given to those diagnosed with a form of dementia and their families is frustrating. We are working to make support available, but connecting with the individuals that need us is challenging. We can’t cure dementia at this point, but we can help people adapt to changes and support them.

To do this, we have to educate people about what dementia really is…it’s not just memory loss.

Until we understand this, we will continue to shortchange people living with dementia and their care partners.

Hi friends!

Today I’m sharing a local news show, the Steele Report, that features our Dementia Friendly Action team. It originally aired on January 12, 2020. You can watch it here:

Steele Report Waterloo Dementia Friendly Action Team

You’ll see me talking about dementia, along with my friend Kevin, who lives with Lewy-Body Dementia in our community. Kevin discusses how he contemplated suicide after diagnosis, his goal of continuing to live as independently as possible in our community, and how he depends on the kindness of both friends and strangers.

In addition to focusing on dementia more generally, the show discusses resources available to those living in my area (northeast Iowa) but I’d encourage you to explore what services might be available in your own area.

In the United States, you can see if there any chapters of the Alzheimer’s Association nearby: https://www.alz.org/

Keep in mind that the Alzheimer’s Association provides support not just for those with Alzheimer’s but for those who live with other types of dementia as well.

If you live in the United States, you can also locate your area agency on aging. If you aren’t aware of one nearby, you can search here: https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

In addition, I would encourage you to check out what you could do to make your community dementia friendly: https://www.dfamerica.org/

On this show, you’ll see a couple of my current and former students, as well as me, talking about dementia, its challenges, and how to seek out support. However, the most powerful words come from Kevin, who is living with Lewy Body Dementia.

Not everyone with dementia wants or is able to speak about their experiences, but Kevin has stepped up to the plate to do so. To Kevin and everyone else who lives with dementia and continues to teach me what that experience is like, thank you. I try to be a good student.

I’ve read and written research articles on dementia. Books on dementia take up space on my bookshelves at both works and home. I go to conferences, seminars, and workshops. I probably do 40 or so presentations on dementia each year, and I teach a college class called Families, Alzheimer’s, and Related Dementias.

But when I spend time with someone who lives with dementia, I always learn something new. Always. In this field, you need a combination of professional and personal experiences. Book knowledge and street smarts, or something like that. I continue to rack up more smarts the more I communicate with people who live with various types of dementia and their families. I’m sure some of my friends with dementia sometimes want to call me out because I don’t understand their experiences, but they are too patient and too kind when I just don’t get it.

And, since it’s the New Year and everyone is talking goals and resolutions, I’d like to say this…I want to keep continuing to learn about dementia. When I started studying dementia about 10 years, I thought I knew a lot. Looking back, I knew virtually nothing. In 10 years, I might look back at 2020 and think I knew nothing now.

And that’d be fine.

Because it would mean I continued to learn.

 

I won’t be putting out any new content until after the New Year, but I will be reposting some past blogs related to the holidays in the upcoming weeks.

Have a great day!

–Elaine

Hi friends!

It’s the week of Thanksgiving, and I almost didn’t write a post for today. After all, the university where I work is on break.

But I did some thinking…and I realized that I need to say something today.

THANK YOU.

Yeah, that’s about it. Thank you. This Thanksgiving I am thankful for you.

I’ve written this blog for almost five years now. Some of you have been with me since the beginning. Some of you have joined me recently.

Thanks to all of you.

I have gotten some negative feedback on my blog. If I’m being honest, I get much more positive feedback than negative feedback.

And yet the negative feedback affects me more negatively than the positive feedback impacts me positively. I wish I weren’t that way, but I am. Maybe you can relate.

The one negative comment on your work evaluation is what you think about…not the dozen positive comments.

The one person who mentions they don’t like your new haircut (just rude) is your focus…rather than the several people who compliment you.

You know how some stuff just eats at you, right?

If you are a person who left me one negative comment about my blog in 2016, I probably remember you. I may or may not remember your positive comment from 2017.

I’ll give you a list of terms that have been used in association with me and my blog: unkind, rude, bitchy, overly politically-correct, offensive, patronizing, uncaring, unprofessional, mean, obnoxious, self-promoting, judgmental, uneducated.

I didn’t realize typing that would make me feel better, but it was somehow cathartic.

Ahhhhhh…

When you put yourself and your work out there on the internet, I’m sure this is par for the course. And guess what? The more people who read my blog, the more people who criticize it. When my mom, my husband, and three friends were my only followers, I only got glowing reviews.

But I really do get over (most of) those negative comments. Much of the time I delete them so that I can’t re-read and overanalyze them. I also worry that I will respond in a way that I wouldn’t be proud of if I read a comment too many times.

I’m not talking about constructive criticism. I won’t tell you I always respond well to constructive criticism, but I do appreciate people who make me think. And I know I’m not perfect, and my blog isn’t perfect.

But here I’m talking about comments that aren’t constructive. Sometimes they are just mean. (I feel very Taylor Swift here.)

I’m not trying to play the victim. Anytime you put something online and encourage people to read it, you’re going to get responses that run the gamut. I know I’m not unique here.

I’m tempted to go on about the criticisms–because once you get me started…but this blog is about Thanksgiving. Gratitude. Feeling blessed.

Every single damn time there is a comment that hurts me (even though I know it shouldn’t), y’all pick me up.

I was having a bad day recently. I had gotten some bad news about a friend with cancer. I spent some of my day helping a student in a mental health crisis. And my cat had a stroke. (She’s doing quite well now.)

I got home from work and happened to notice a comment on my blog that wasn’t exactly positive. Looking back, I overreacted to it. In the context of my day, it was a very small thing. I let my crazy brain take hold and make it a big thing.

Then I saw another comment that picked me up. A person had shared my blog with the comment “This is the lady I’ve been telling everyone about.”

I’m not sure why this particular comment was so impactful to me. Maybe I was just flattered that someone had been talking about me…in a positive way.

It picked me up.

In the last few years, there have been a couple of times I’ve seriously considered giving up writing. Most days I enjoy sitting down to write, but I also have a full-time job and it’s hard to find the time some weeks. I don’t make any money off my blog. I’m not selling a book. I’m not pushing an agenda.

So why do I keep doing this?

As a kid, I wanted to be a writer. I’m sure it never occurred to me that I’d write things that people didn’t like. It also never occurred to me that I’d make these connections from people across the world. I could’ve never predicted the power of the internet.

I thought I’d write book and people would buy it. I didn’t know I’d have the opportunity to write 2000 words a week that would be distributed instantaneous by the literal click of a button.

And that people could give me instantaneous feedback also by the literal click of a button.

It’s a crazy world. The internet makes a pretty easy to tell someone you think they suck. You don’t have to look them in the eye. They probably aren’t going to show up at your doorstep with a baseball bat. So insult away.

I keep writing because of the many of you who I consider “my people.” Sometimes I know your names, and sometimes I don’t. Maybe you have some internet nickname that I try to interpret (What does joygirl88 mean? Was she born in 1988? Is she 88 years old? Were joygirl1 through joygirl 87 taken?).

Perhaps, from your comments, I know you have a parent with dementia. Or a spouse with dementia. Or that you work in a memory care community.

Many of my readers are living with dementia. When I started this blog, I didn’t expect to have readers with dementia. Looking back, I’m not sure why I didn’t anticipate this, and I’m embarrassed I never considered it. Your feedback is especially important to me, even when you’re telling me that I missed the boat…which I sometimes do.

Yeah, you’re “my people.”

I appreciate you. It means a lot to me that you invite me onto your screen once a week. I try to write stuff you can read in less than 5 minutes. You are kind enough to keep inviting me back, but I don’t want to monopolize your time.

You are the reason I keep writing.

If you celebrate Thanksgiving, enjoy it. I’m giving you permission to opt out of events that don’t work for you now that dementia is becoming a bigger part of your life. I’m giving you permission to have an exit plan and leave without saying goodbye to every single person at your holiday gathering. I’m giving you permission to say no to obligations and to say yes when people offer help.

Happy Thanksgiving, friends.

Thanks for reading what I write.

 

When I say dementia, many people equate the term with memory loss and only memory loss. In reality, dementia is about so much more than memory.

If you read my blog every week, I apologize for sounding like a broken record. (Is that an analogy that young people even understand anymore?)

Today we’re going to talk dementia and sleep.

I don’t care who you are; you function better when you sleep better. I could reference hundreds of research articles, but you know it’s true. Not getting good rest makes everything harder. When we don’t sleep well, our brains fail us.

Example: I woke up at 3:30 am last Wednesday. During the day I put a paper plate in the sink to be washed instead of throwing it away. Then I sent an email to a student and signed it “Elaane.” Yes, I misspelled my own name.

And, in an embarrassing professor moment, I entered a 2000 in my gradebook when it should have been a 20. I’m sure my student was disappointed I caught this after I noticed they were sitting at 1052% in the course.

At work, someone asked me how I was. I responded that I was hungry.

After a pause, I said, “Oh, not hungry. I mean, tired. I’m tired.”

I was so tired that I got the words hungry and tired mixed up.

Our brains work better when we get adequate and restful sleep. This is even more true for a brain that is already compromised by dementia. Also, the dementia brain tires more quickly than a brain not affected by dementia. This is why people with dementia may sleep more than they used to.

But getting restful sleep can be challenging for some people living with dementia. This can be due to dementia itself, but sleep issues can also be caused and exacerbated by other factors such as medications and co-existing medical conditions.

If sleep habits change suddenly for someone with dementia, this could be a result of pain that the person has difficult expressing. In addition, changes in sleep may be a result of anxiety and depression that accompany dementia.

I find that sleep issues are particularly challenging for a couple of reasons: 1) When sleep goes downhill, other dementia symptoms tend to rear their ugly heads, and 2) It is rarely only the sleep of the person living with dementia that is affected (you know what I’m talking about, caregivers).

A couple years ago, I was invited to visit a dementia caregiver support group. A man whose wife had Alzheimer’s was talking about how much she slept. He estimated she probably slept about 16 hours a day. She slept through the grandkids’ visits and through her favorite TV shows. She was often difficult to rouse, and he often checked to see if she was still breathing.

Another man in the group was also an Alzheimer’s caregiver to this wife. Upon hearing the other guy’s description of how much his wife slept, he chimed in about his own wife’s sleep changes–which were the exact opposite.

“I don’t think your wife has Alzheimer’s,” he said. “People with Alzheimer’s have trouble sleeping. My wife is up all night wandering around the house. Alzheimer’s makes it so you can’t sleep.”

Other group members started sharing their own experiences. Their loved ones slept a lot…or a little. They slept so soundly that they couldn’t be woken up, or they slept so lightly that they woke up every hour during the night. Some had night terrors. Some were sleep walkers. Some slept odd hours–wanting to be in a bed all day but roaming around the house at night.

Every single person in the group had noticed that their loved one’s sleep had changed in some way.

As I often say, dementia is about change.

This applies to sleep. Someone with dementia may experience changes in sleep pattern and quality. And I can’t predict how dementia will impact a person’s sleep.

So, as crazy as it sounds, sleeping more is a symptom of dementia, as is sleeping less. Restless sleeping is a symptom of dementia, as is a sleep so deep that one can’t be roused.

There are some generic tips to try to keep sleep patterns “normal.” Bright light or outdoor exposure during the day. Keeping the environment dark and quiet at night. Making sure days include activities so individuals living with dementia are tired at night. Establishing a routine before bed and upon waking in the morning.

To be fair, these are the same sleep tips given to anyone with sleep issues–not just those with dementia. In fact, I go through this list when I’m struggling with insomnia.

Sometimes these strategies just don’t work. This is a tough one for caregivers who live with their loved one. There is nothing inherently awful about someone with dementia having an adjusted sleep schedule where they are up most of the night and sleep during the day, but if you’re a caregiver and have to get up in the morning for your job after being up all night making sure your loved one doesn’t wander out the front door, you are probably not thriving at your job. Or your life.

Someone I know had to reluctantly choose a nursing home for their mother not because of her memory issues but because her sleep schedule was so erratic that the rest of the family was exhausted. In fact, sleep issues are a common reason for a family to have to consider a memory care community or nursing home as an option.

Another person I know started paying $300 a week for a night “companion” for her father. She said she was buying herself a good night’s sleep, and it was the best money she ever spent. (Understandably, this isn’t an option for everyone. Money makes life with dementia just a little bit easier.)

A man who came to an educational seminar I was speaking at this summer told me that his wife had been diagnosed with frontotemporal dementia and experienced significant changes in her sleep pattern. She started staying up later and later. He tried to convince her to come to bed when he did, but she refused. Her “new normal” included a bedtime of about 4 am with a wake-up time of about noon. I asked how he was doing with this.

He explained that he was retired, and he wasn’t on much of a schedule, so he adjusted their lives to meet the sleep schedule that she preferred. They ate breakfast at 1 pm and dinner at midnight. He’d even subscribed to Netflix so he could watch his favorite shows during the night when nothing was on TV. If people wanted to visit before noon, he said no. He shifted his schedule to meet hers.

I commended him. If you can accommodate the sleep schedule that the person with dementia prefers, go for it.

However, I understand that this isn’t a possibility for most people. Dementia exists in the context of our lives, and many caregivers have jobs or children in the home. It is not surprising that caregivers are frequently sleep deprived. And you can only live with sleep deprivation for so long until your health becomes compromised.

Dementia is responsible not only for changes in sleep pattern but also an increase in disordered sleep.

There’s a type of dementia, Lewy Body Dementia (LBD), that makes people especially prone to sleep issues. Many people with LBD have something called REM sleep behavior disorder.

Typically, while people are in REM sleep, their body experiences temporary paralysis. It sounds scary, but it’s actually a good thing. Your body stays still, in your bed and tucked safety under your covers, as you dream.

If you have REM sleep disorder (which many people with LBD and other types of dementia do), your brain doesn’t effectively paralyze your body. You act out your dreams, and many of these dreams are dramatic and violent.

Someone might talk, scream, and thrash around in their sleep, not only disrupting their own sleep but the sleep of others in the house. In some cases, the person might become violent or even leave the house on foot or in a vehicle.

I know someone with dementia who got up in the middle of the night and laid out all the kitchen knives on the counter. She then called 911 and told the dispatcher that there was intruder in her bathroom. She didn’t remember any of this in the morning. I also know of a man with dementia who was getting a gun out of his safe at 2 a.m. when his son intervened.

These experiences can be terrifying for those who live with someone who has dementia, but they are also terrifying for the person living with dementia.

It’s important we get past memory loss when we talk about dementia.

We aren’t supporting individuals living with dementia and their support teams until we acknowledge the various types of challenges they must face everyday.

And every night.