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.

Once again, I repeat my complaint…we are still presenting dementia as if the only symptom is memory loss. If you’ve ever heard me speak, you might have been surprised at how little I focused on memory loss.

Memory loss is to dementia as vomiting is to an upset stomach. Hang with me here…

There are lots of potential symptoms involved when you say you have an upset stomach: vomiting, diarrhea, cramps, acid reflux, constipation. To only talk about vomiting when you talk about an upset stomach is to mislead people about what is challenging about having an upset stomach.

There are lots of potential symptoms involved when you have dementia: memory loss, balance, emotion regulation, communication difficulties, personality changes, issues with sensation and perception. To only talk about memory loss when you talk about dementia is to mislead people about what is challenging about having dementia.

I’m doing a bit of a series here on symptoms of dementia that may get less attention.

Today we are talking about apathy.

If you care to continue reading, that is. Or if you don’t feel like it, I understand. Doesn’t matter to me. Whatever.

Aren’t I funny?

Apathy is a lack of interest or concern. When you should care about something and you just don’t, that’s apathy. Lack of enthusiasm. Lack of engagement.

As you might expect, it often shows up with its good friend, depression. Depressed people are often apathic. They don’t care about their relationships, their jobs, their health. They can’t get excited about things that used to be fun. They can’t make themselves care enough about their hygiene to take a shower. It’s not that they’ve given up. It’s that apathy is a symptom of depression just like blurred vision is a symptom of a migraine.

I hear often times that it just seems like Grandma doesn’t care anymore. She used to be excited to go to the grandkid’s games and recital. Now she’d rather sit on the couch. Her niece got engaged. She shrugged. Her brother died. She didn’t cry.

Her family isn’t sure if she really seems sad. She certainly doesn’t seem happy. She just seems nothing.

Recently someone was in tears as they told me that their husband, who had been diagnosed with frontotemporal dementia, had wet himself while out to dinner. It was not that he had wet himself that upset her the most. It was that he didn’t care. While she worried that people around them could smell the urine, he kept eating from the bread basket. She encouraged him to go to the restroom to clean up and try to possibly dry his pants using the hand dryer. He refused.

Another person I know with frontotemporal dementia was confronted for stealing several kinds of expensive cheese from the grocery store. (I should note that impulse control issues are another symptom of dementia.) When confronted, he wasn’t ashamed. He didn’t seem embarrassed or humiliated. He told his wife to pay for the item. When she got upset with him, he didn’t understand why this was a big deal.

You can categorize apathy into three (overlapping) types:

Affective/emotional apathy–Someone experiencing this type of apathy often lacks empathy and loses the ability to show caring for others. They may not greet family members with the enthusiasm they had in the past. They’re unaffected emotionally by events that would have had a big impact them on the past. They’re unexcited by good news and unbothered by bad news.

Cognitive apathy–This means that your brain can’t be bothered to be engaged with what’s going on around you. People with cognitive apathy may not be able to initiate a conversion. Their brain just decides it’s too much work to listen, to talk, to process information. You might become frustrated that they aren’t paying attention. Again, keep in mind this is a symptom. Getting frustrated with the individual does no more good than getting frustrated by someone with lung cancer who has a cough.

Behavioral apathy–This means that people are physically able to move about and accomplish tasks…but they can’t. We all experience this sometimes, but this isn’t just a matter of overcoming a lack of motivation. For some people with dementia, this is a very real symptom that impacts quality of life. It may mean that someone who previously kept a clean house now lives with trash on their floor for months at a time. It may mean that the tasks involved in personal hygiene are just too much. Again, this isn’t a person who has given up. This is a person who is experiencing a symptom.

And that’s what’s particularly hard about dementia and apathy.

It seems like the person living with dementia just doesn’t care. And we get frustrated become they seem to have given up.

But keep this in mind. Motivation is a brain function. Their brain is failing them.

It’s a symptom of a disease. It’s not them. It’s not you. It’s part of dementia.

This isn’t just about memory.

I am continually amazed at how we still think dementia is only about memory loss.

When I see Alzheimer’s and other dementias represented on TV, in movies, and on social media, I am frustrated at how these portrayals are often focused entirely on memory. Unfortunately, I sometimes see people in the medical profession present it the same way. Dementia = Memory loss.

But we’re only talking about a small piece of dementia when we talk about memory loss.

If you have dementia or know someone who does, you have probably become all too familiar with symptoms other than memory loss.

Today we will talk about one symptom that many individuals not affected by dementia are unaware of….hallucinations. Yes, people living with dementia may have hallucinations.

Let me add that the experience of dementia varies both by the disease causing the dementia (e.g., Lewy Body dementia, frontotemporal degeneration, vascular dementia, Alzheimer’s) and by the individual. Certain types of dementia are more likely than others to cause hallucinations. In particular, those diagnosed with Lewy Body dementia often experience hallucinations early in the disease process.

I tried to do a bit of research to see what percentage of people living with dementia have hallucinations, but I couldn’t find any statistics that I would trust. Do people with dementia always tell us when they have hallucinations? Obviously they don’t.

I will add that once a guy with Lewy Body dementia looked down at his shoes and said to me, “There are snakes crawling over my feet. I know they are not real but I can’t make them go away.”

Sometimes we identify a hallucination by behavior. We can’t experience another person’s hallucination, of course, but we can hear them talking to someone we can’t see. In other words, we experience a person’s response to a hallucination and have to connect the dots.

Here is what you need to know about hallucinations and dementia.

Hallucinations are sensations that appear to be real to the person experiencing them. When I use the term sensations, I’m referring to the five senses. A hallucination might mean you can see someone who isn’t there. It could also mean you hear voices. And those hallucinations are often as real to the person experiencing them as your reality is to you.

Hallucinations are not limited to sight and hearing. They can involve other senses as well. Someone experiencing a hallucination may insist they smell apple pie and be argumentative when are told there’s no apple pie in the kitchen. They may taste something metallic as they eat their mashed potatoes and start digging through them with their hands to find the problem. A person can also experience body sensations like spiders crawling all over their body. They may pick at their skin until it bleeds.

Hallucinations can cause people living with dementia to have significant anxiety. Their actions might not make sense to us unless we are aware of the hallucination, and often times our reaction to the hallucinations increase rather than decrease that anxiety.

Think about it.

What would you do if there was a large man standing in the bathroom watching you when you showered? What would you do if smelled rotten fish and no one would help you look for the source of the odor? What would you do if there were bugs crawling around in your underwear and people refused to help you change clothes? What would you do if your food tasted so terrible that it was inedible and no one would bring you anything else to eat because they insisted you were being “difficult?”

You’d probably be argumentative. Maybe you’d be aggressive. Or perhaps you’d just go to bed and cry because no one was listening to you. But when people with dementia do these things we say they are a behavioral problem.

If you are interested in watching a video clip on interacting with people living with dementia through hallucinations, I just happen to have one for you: Teepa Snow on Redirecting Hallucinations

There are medications that doctors often try to use in minimizing hallucinations. However, I would suggest doing an inventory to see if there are potential changes that can be made to minimize hallucinations without (or perhaps in addition to) prescriptions.

Here are some ideas:

• Make sure that a person who is prone to hallucinations gets adequate sleep. Lack of restful sleep can trigger hallucinations in those living with dementia. (I also know of a mother of newborn twins who had hallucinations because she had literally not slept in 3-4 days. Our brains don’t work well when we don’t sleep. Surprise.)
• Change the environment. If a person has a recurring and bothersome hallucination in a certain place, either avoid that place or change it in some way. If someone looks out a certain window and sees a threatening figure, put curtains over the window. If a person tends to hear a scary voice when they sit in the lounge, find an alternative place for them to sit.
• Dehydration and starvation can make hallucinations more likely among those who experience dementia. Someone I know took her panicked grandma to the emergency room because her hallucinations had become more frequent and anxiety-provoking. Fortunately, the hospital figured out that she was severely dehydrated and got some fluids in her ASAP. Her hallucinations didn’t go away, but they became less frequent.
• Use headphones and music. I know of a man with Alzheimer’s who experienced auditory hallucinations. He heard voices, and he paced around the nursing home all day—trying to literally walk away from those voices. His family got him an iPod and put some headphones on him. His quality of life improved dramatically. The voices had been drowned out by Johnny Cash and Peter, Paul, & Mary.
• An infection can make someone more likely to hallucinate. When there is a sudden onset or steep increase in frequency, my first words of advice are to run a urinalysis. I am always surprised how often the change is due to a urinary tract infection.
• Listen. Just listen. If you experienced something that scared you or made you sad, you’d want to tell someone about it. Imagine if that person dismissed you or told you that you were making up the story. What if they just changed the subject? Wouldn’t it feel like they didn’t care? You’d feel unimportant and not valued. Why would people with dementia feel any differently in that situation?

Did I mention dementia isn’t just about memory loss? Where can I get one of those sandwich signs? I’ll print this message on it and stand out on the street with those people promoting the sale at the furniture store and the used car dealership.

In order to support people living with dementia and their caregivers, we need to start understanding that dementia leads to deficits in all cognitive function…not just memory. In order to promote our dementia-friendly community movement, we have to understand the experiences of people living with dementia. We need to identify areas in which we can improve services, resources, and environments for this population.

We can’t do this if all we acknowledge is memory loss.