COVID-19 and….I don’t even know where I’m going with this

In the midst of this pandemic, I feel inadequate. I have nothing to offer you.

Except my apologies.

If you have COVID-19, I am so sorry.

If you suspect your have COVID-19 but can’t get a test, I am so sorry.

If you love someone who has COVID-19, I am so sorry.

If one of your loved ones has died of COVID-19, I am so sorry.

If you live in a nursing home and cannot see your family and friends, I am so sorry.

If you cannot visit your loved one in a nursing home, I am so sorry.

If work at a nursing home and are asked to go above and beyond when you are struggling yourself, I am so sorry.

If COVID-19 has caused a relapse (or a first bout) with anxiety or depression, I am so sorry.

If COVID-10 has exacerbated your obsessive-compulsive disorder, I am so sorry.

If you have an acute or chronic illness and have been unable to get adequate care because of COVID-19, I am so sorry.

If you have had to make difficult decisions about other people’s lives due to COVID-19, I am sorry.

If you are struggling financially due to COVID-19, I am so sorry.

If you have been discriminated against for your race due to COVID-19, I am sorry.

If you work in health care and have (reasonable) anxiety because you put yourself at risk at your job, I am so sorry.

I could go on. This pandemic has impacted each of us in unique ways. But if you are sitting around feeling sorry for yourself….it’s okay.

You can’t stay there forever, of course, but you are allowed to grieve — whether it’s for a death or for the realization that you won’t get to see your grandkids until after their next birthdays. It’s okay to be sad. It’s okay to be pissed off. It’s okay to rage and to cry and then to laugh because it’s all so ridiculous.

Whatever you are feeling, I’m telling you right now that it’s okay.

And if you are feeling a million things all at the same time and then also feeling nothing at all….I’m right there in the same boat.

If you are scared, it’s understandable. If you’re confused, I get it. If you are feeling bored, overwhelmed, useless, sulky, or bitter, I’m right there with you.

I’m also feeling grateful. Grateful that I’m healthy, of course. Grateful for everyone who is following protocol by staying home. Grateful for those willing to work in health care in these tough times. Grateful that my mom and stepdad are taking recommendations seriously and I’m not having to argue with them about their behavior. Grateful that I started a program to bring art supplies to residents of nursing homes and people responded. Grateful that my husband and I are still talking after a couple weeks of being in the house together.

I’m doing okay, really. I know that others are not. I know it’s not going to get better soon. Maybe we learn to cope. Maybe we find new solutions to the challenges we are facing.

But I’m not a sunshine/unicorns/silver lining type of girl. I like to find hope in real life rather than in fantasies.

This isn’t going to be cleaned up by Easter, but I’m finding hope in the kindnesses I see. People taking care of their neighbors. People giving the last roll of toilet paper to the older couple behind them in line. People working in labs day and night to come up with interventions and vaccines. People sewing masks. People who own businesses and are putting humans among profit.

Maybe this virus sucks, but people don’t.

I’m going to cling to that because perhaps it’s the only way I’ll get through this.

Whoever you are, wherever you are, I hope you are somewhat okay. I’m worried about your physical health but I’m also concerned about your mental health.

Take care of other people, and take care of you as well.

 

XOXO,

Elaine

 

 

 

Special Guest Blog: COVID-19 and Dementia

Today’s special guest blogger has more expertise on the subject than I do–he is living with dementia. Emphasis on “living.” Thanks, Roger, for sharing this and for reminding us of the potential that people living with dementia have to continue living meaningful lives and making a difference. —Elaine

 

 

Coronavirus and Dementia

How I see things in my world

 

My name is Roger Marple. I live with Alzheimer’s and I am happy to say challenges aside, my quality of life is full and meaningful.

Recently I made a comment on Twitter than seemed to resonate with people.

“When your mortality could be challenged by Coronavirus I get the anxiety and worry many are experiencing. Take it from a guy who is used to have his mortality challenged, don’t stress what you can’t control. Live in the here and now. Carry on folks, you’re doing just fine.”   Roger Marple @rogerdoger991

When I see people coming to terms with their mortality possibly being challenged with Coronavirus my empathy for absolutely everyone on earth rang true for me and thus my comment here. 

Empathy: such a powerful skill to have in our lives. Definition as follows: 

Empathy: noun: “The ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation.”

Getting our heads around situations when our mortality can be challenged takes time. We need time to process this and collect our thoughts on how we are going to handle our challenge we are facing.

After much thought living with Alzheimer’s, I came to the realization that we all live with this terminal condition called life. After all is said and done we are all in the same boat. 

The only difference between me living with Alzheimer’s and healthy people is perhaps I can see how my mortality may look for me. This begs the question how do we handle ourselves in times of adversity? One advantage I have over many I have had time to think about this. I have time to have an understanding what this looks like. You see my friends, I may have challenges but as mentioned my life is full and meaningful for me. 

This discussion is about how everyone is going to address adversity head on we are all experiencing and goes back to my mention of the word empathy

I saw news reports of hundreds of people on the beach in Fort Lauderdale, Florida, or people in the UK packing bars before they were shut down, having a good time during an outbreak of the largest pandemic of our century.

If I were a betting man based on the media at the time, pretty everyone in world knew about the Coronavirus and the repercussions from spreading this virus, as well as overwhelming our health care system.

Here is an example of empathy not being seen in the big picture in our new reality at least for the time being. Sadly people will suffer down the road due to this behavior in ways I doubt they could even imagine. For every action there is a reaction. 

On the other side of the coin, I see story after story of how we are pulling together to help each other. A local beer brewery has halted making their product in my town. They are now making hand sanitizer and giving it away for free to anyone who needs it. I see more examples of this kind of ingenuity, compassion and kindness every day by people and business alike.  It is absolutely wonderful, and my respect and admiration runs deep within my heart for them. 

I have a neighbor (a single mother) who has a son with a compromised immune system. I drop her off food, baking I have done, and offer anything I can do to help her I am there for her. Another friend is a senior who has similar health issues. He has an open invitation any favor he may need. I’ve fixed things for him, packed water for his water cooler, and ran errands for him. I also look for other opportunities to be a help in these trying times. 

It’s all about the choices we make. It’s all about what we can do for others in a time when our needs are at the greatest. It’s all about listening to our government and slowing down the spread of this Corona virus not to overwhelm our health care system. This is a time to reflect on what we can do for others if we are in a position to do so and more importantly acting on it. 

I may have Alzheimer’s but at least for now, challenges aside, for the better part I’m still doing ok. I want to be remembered how I lived my life in times of adversity in a good way. Not just my adversity but having empathy for others for their challenges and doing my level best to make a positive difference, whatever way that may look. It doesn’t have to be grand gestures, saving the world; it’s more about baby steps recognizing people that could use a hand. 

There will be many unsung heroes who probably won’t even get a thank you for what they did after all is said and done. For these unsung heroes it probably wouldn’t even matter. But at the end of the day they will look in the mirror and like what they see and rightfully so. They made / make a difference in our society. 

Hope your choices are good ones going forward in these trying times. We are all in this together in this journey of life my friends. Whether living in times of adversity with Alzheimer’s or times like this with Coronavirus this is how I chose to live my life. I hope you do to. 

If one person who lives with Alzheimer’s can see this with such crystal clear clarity, I hope you can too. 

 

Stay safe everyone.

 

Warmest regards,

 

Roger Marple 

 

The Northern Iowa Gerontology Nursing Home Art Box Project!

Exciting news!

Yesterday we launched the Northern Iowa Gerontology Nursing Home Art Box Project to send art supplies to nursing home residents who are isolated due to COVID-19.

I have some funding to buy supplies due to a generous gift from the Adele Whitenack Davis family. However, some people have asked how to contribute. And the more supplies we have, the more residents we can help!

I made a registry with some needed items. If you order from Target off the registry, it will be shipped directly to us for packing.

 

XOXO Elaine

Nursing Homes and the Coronavirus

Does anyone else wake up every morning and think they’ve had a nightmare based on some odd sci fi movie they once saw…and then realize it’s real?

I don’t know where to begin.

First of all, I’m not in nursing homes, memory care centers, or adult day centers lately. I’m a gerontologist who is avoiding older adults like the plague. Except they aren’t the plague. I am potentially the plague.

To be clear, I have no indication that I have COVID-19. I feel fine. I have no symptoms. But I can’t rule out that I’ve contracted it and am not yet showing symptoms. None of us can….

I would be devastated if I transmitted COVID-19 to someone who health was vulnerable due to age and chronic illness.

I am not scared of getting COVID-19. In the framework of our society, no one really cares if I get COVID-19. However, I am terrified to transmitting COVID-19 to someone who might die from it or even need our limited medical resources. And if I don’t get it, I can’t transmit. Therefore, my goal is to avoid the virus. It should be your goal as well, no matter your health status.

Although I’m not at nursing homes or other senior living environments, I’m hearing from employees and families…and even some residents…and what I’m hearing makes me sad. It’s not just the coronavirus. It’s the (necessary and important) precautions we are taking due to the coronavirus. The sacrifices we are asking people to make are excruciating.

I’ve heard from a family who worried that their mom’s nursing home would shut down to visitors (which it eventually did) and decided the best decision was to bring their mom home during this time. Their mom, who has Alzheimer’s, had more extensive care needs than they realized. They realized they couldn’t provide her adequate care at home and drove her back to the nursing home. They weren’t even let in the building to get her settled. They sat in the parking lot and cried. They don’t know when they’ll see her again.

A current Gerontology student at the university where I teach works as a nursing assistant at a local nursing home. When the nursing home decided to ban visitors to protect residents, a family member called the facility and told my student (who is, by the way, 19 years old) that she and the other employees are cruel and heartless for keeping residents from their loved ones. I get it…it’s hard…but we’re all in this together. And strictly limiting visitors is absolutely the right decision. Please don’t be angry at nursing home employees. Many are staying extra hours during this time.

I have alumni working as nursing home administrators. They are telling me how nothing has prepared them to make the decisions they’ve had to make in the last few weeks. They are telling staff to stay home if they have symptoms, but they worry about having enough staff to take care of residents. They understand the social needs of their residents, but they’ve had to stop group activities and cease congregate meals.

They have residents with dementia who don’t understand or forget why their families can’t visit. They have residents who watch the news all day long—and are terrified that the virus will infect their nursing home and they will die.

I know a few technology-savvy nursing homes who have set up Facetime and Zoom visits with families. However, I know some people with dementia will be confused or even agitated by virtual visits. And not all families are able to take advantages of these services due to lack of internet service.

A friend who works in a nursing home has told me how scared some of their residents with dementia are when staff must wear a mask. If you struggle to recognize people under normal circumstances, imagine how hard it might be when they show up in a mask.

I got a message this week from a woman whose mother has younger-onset Alzheimer’s. Her mother is progressing quickly. One day she could brush her teeth; the next day she couldn’t. She struggles to remember her daughter. Her daughter knows that by the time she is able to get back into the nursing home her mother will likely have forgotten her name. She’s unsure of the other changes that will happen during the separation and is bracing herself for the version of her mother she will meet when she returns.

An older man sent me a message about his wife, who lives with dementia in a memory care community. He usually spends most of the day with her, and he is there to assist her in eating her meals. He was told this week that he wouldn’t be able to visit for an indefinite period of time. He told an employee that if his wife won’t eat, it helps to sing to her, particularly “You Are My Sunshine.” Oh, my heart.

I know someone who works as an activity director at a nursing home. She coordinates a Sunday church service in their chapel. Pastors in their community rotate in preaching the service. She left some messages for the pastor who was supposed to preach last Sunday to tell him not to come. He showed up anyway because, “God will keep us safe.” He was not allowed in the building.

I’m sad for those who will be fighting for their lives because of coronavirus, but I know that our important precautionary measures will cause individuals and families significant pain and trauma that isn’t physical. There’s no way around this.

If you have any experiences related to nursing homes and coronavirus, I want to hear about them. Please comment below. I don’t have any answers, but I want to know what this is like for those of you directly impacted.

I’ll have time to read all of them. After all, I’ll just be sitting here at home. Trying not to get COVID-19.

 

 

This Ain’t Just About Memory: Dementia and the Senses (Part 5: Touch)

This is the fifth of a series of five posts about the senses and dementia.

Today we focus on touch.

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

But allow me to start here…

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

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

Dementia doesn’t change this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This Ain’t Just About Memory Loss: Dementia and Senses (Part 4: Taste)

This is the fourth in a series of post about dementia and the senses. Some of the following content is adapted from a 2016 blog post that I wrote.

Today we address taste.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This Ain’t Just About Memory Loss: Dementia and Senses (Part 3: Smell)

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.

This Ain’t Just About Memory: Dementia and the Senses (Part 2: Sight)

As you might now, I am currently focusing my blog posts on symptoms of dementia other than memory decline. This is the second in a series about how dementia might impact sensation and perception.

Today we focus on sight. (And, if some of this seems familiar to you, I’d like to thank you for being a loyal readers…I first published some of this content in 2016).

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when a woman with Alzheimer’s suddenly became very upset.

“Who is watching the children?” she kept asking me. “They are going to get hurt.”

I wasn’t sure what children she was referring to, but I tried to assure her that they were safe. She wasn’t having it.

“They are going to hit each other with that stick and no one will know,” she said. She was becoming agitated, so a staff member removed her from the activity. As she was walking down the hallway, she kept looking back at me and shouting about how I needed to care more about children.

As I wrapped up the activity about fifteen minutes later, I packed up my equipment and turned around to leave. I realized that there was a picture on the wall behind me. The picture was a large framed image of several small children playing baseball. One of the children was holding a bat.

At that point, I realized that this woman’s concern was valid based on how she was viewing the world. It was likely that she saw the picture behind me and thought it was a window. She thought there were children outside of that window playing baseball with no supervision. She saw the child holding a bat (or a “stick”) and was concerned that they were going to get hurt.

Instead of listening to her concern about the children, we had dismissed her and removed her from the situation. No wonder she was frustrated.

Sometimes people with dementia confuse pictures, especially larger ones, for real-life scenes or windows. I also find that they may misinterpret coat racks for people. I was recently asked if the man in the corner would be joining us for lunch. I looked to the corner to see a coat rack with a single coat hanging on it and a hat sitting on top. I told my friend with dementia that I thought that man had already eaten lunch.

Changes in the visual-perceptual system can impact eating. A person with dementia may not see mashed potatoes on a white plate. I know a woman with dementia who refused to eat a piece of lasagna (her favorite food) because she swore there were fleas on top of it. They were actually tiny oregano flakes, but her family could not convince her. She only ate it when they took away that piece and returned with a piece of lasagna with the oregano scraped off.

At a caregiving seminar recently, a woman told me about her husband who ended up in the hospital with dehydration. He had complained about thirst, but when she brought him water he didn’t drink it. She realized later that he couldn’t recognize that there was water in the glass, so he thought it was empty. Her solution to the problem? She added a very small amount of Crystal Light to the water so he could see the fluid in the glass.

Depth perception often becomes an issue with dementia. Again, it’s not that there’s necessarily a problem with the eyes. It’s that the brain struggles to make sense of what the eyes see. Compromised depth perception is often problematic when it comes to flooring. Rugs may look like holes in the floor. Someone might refuse to step onto a blue floor because they believe it’s water. A change in flooring surface may look like a large drop-off. Shiny flooring may appear wet or slippery. Sometimes people have a problem telling where the floor ends and wall begins. It can be helpful to paint the baseboards a contrasting color.

People with dementia might struggle with visual distractions. Keep in mind that the dementia brain has to work hard to interpret visual data. Trying to interpret too much at a time can lead to irritability and agitation. As strange as it might sound, someone might have difficulty focusing on the TV if there is a loud patterned wallpaper on the wall behind the TV. Visual “noise” can keep a person with dementia from being able to focus on what is important visual information. (And you can tell how I feel about wallpaper by my description of it as visual “noise.” On a related note, it takes several weeks to destroy that visual “noise” with chemicals and razor blades when you move into a house whose previous owners obviously found wallpaper quite pleasing.)

It’s important to remember that people are visual data. We know that sometimes people with dementia forget their loved ones or mistake them for others. They don’t recognize their daughter. Maybe they think their grandson is their son. Perhaps they think a nursing home staff member is their mother. Of course, much of this is due to compromised memory.

Sometimes, however, a person with dementia simply needs more time to process the visual image of a person. Let’s say you visit your grandma who has Alzheimer’s. Walk into the room. And then stop about four feet in front her. Just pause. Allow her to process you visually as a still (not moving) image. This gives her the best opportunity to recognize you, and–even if she doesn’t recognize you–she is less anxious as you move toward her. Just like you should give someone with dementia plenty of time to process a question after you ask it, you should give them plenty of time to process an image you put in front of them.

The more I work with people with dementia, the more I realize that their behavior makes sense if I can figure out how they see the world.

It’s just that figuring out how they see the world sometimes takes a bit of detective work.

 

This Ain’t Just About Memory: Dementia and the Senses (Part 1: Hearing)

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.

This Ain’t Just About Memory: Dementia and Impulse Control

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.