What You See in Dementialand

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

Today we focus on sight.

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.

 

Mirrors, Strangers, and Friends in Dementialand

I know a man who accused his wife of cheating because this old guy showed up in their bedroom at night. I recently talked to the daughter of a man who refuses to take showers because he is sick of a creepy dude watching him. A woman at a local nursing home thinks that the woman in the mirror is actually the woman in the next room, and she keeps telling that woman to find a hobby instead of sitting there all day. And I know multiple individuals with dementia who have told family members that people are breaking into their homes. A few have even called the police.

When I was a kid, my mom worked at a nursing home. I remember one particular incident like it was yesterday–although it was (gasp) about 30 years ago.

My mom, a resident, and I were walking down a hallway. There was an expansive mirror on one side of the hallway. The resident had taken a fall a few days before. The fall had left her with nasty black eye and bruising all over one side of her face.

The resident caught a glimpse of herself in the mirror and froze. I thought she was about to make a comment about how awful her face looked, but she didn’t. She didn’t even know it was her face.

“What the hell happened to that old bag?” she exclaimed.

I remember being fascinated with how this person could look in a mirror at herself and think it was someone else. As I sit here thirty years later, I still find this one of the saddest, scariest, and most interesting things about dementia. Seeing a person look in the mirror and not recognize themselves always takes my breath away.

I know a man who accused his wife of cheating because this old guy showed up in their bedroom at night. I recently talked to the daughter of a man who refuses to take showers because he is sick of a creepy dude watching him. A woman at a local nursing home thinks that the woman in the mirror is actually the woman in the next room, and she keeps telling that woman to find a hobby instead of sitting there all day. And I know multiple individuals with dementia who have told family members that people are breaking into their homes. A few have even called the police.

A woman in a support group told me that one day she walked into the bathroom to see her mother washing her face–except it was the face in the mirror. She was getting angry that the woman wouldn’t stay still.

Mirrors are confusing and often agitating for people with dementia. There’s an easy solution, of course. You can take them down. In a family home, curtain rods can be placed over mirrors so that they have adjustable curtains or drapes.

I do know several people with dementia who have made friends with the figure in the mirror. One man chats away to his buddy as he brushes his teeth and bathes. He seems to think it’s someone he served with when he was in the Navy. Another women I know is convinced it is her mother who stares back at her, and she finds this comforting.

The grandmother of one of my friends used her friend in the mirror to reinforce her own opinions. My friend would walk into the nursing home room, and her grandma would say something like “Your shirt is too low cut. You look like a hussy.” Then her grandma would motion to her friend in the mirror and say, “And she agrees with me.”

Fortunately, her family decided to accept the friend in the mirror as part of their grandma’s reality rather than argue with her perception. My friend says she was outvoted on everything–because of that dang lady in the mirror who seemed to agree with grandma on fashion, politics, religion, and TV shows. (The lady in the mirror always wanted to watch Divorce Court, which happened to be grandma’s favorite show as well. What a coincidence.)

The young adult son of a woman with Alzheimer’s told me that he was somewhat prepared for the day that his mother didn’t recognize them. It wasn’t easy, but he saw it coming. He expected there’d be a moment when his mother would look at him blankly and not recall who he was. All the brochures and website had warned him.

He told me was unprepared for the day their mom did not recognize herself. She looked in a mirror and asked about the person looking back at her.

Her son said, “That’s my beautiful mom.”

She responded, “Oh, I don’t know your mom, honey.”

How strange is a disease that it can make you forget yourself?

 

 

Whack-A-Mole and Tongues in Dementialand

A friend of mine, who is engaged to be married, once referred to conversations with her future mother-in-law as games of Whack-A-Mole. I remember being a huge Whack-A-Mole fan when I’d visit Chuck E. Cheese as a kid. Little toy moles would pop up in random patterns and I’d have to respond by hitting them with a mallot. My friend considered her future mother-in-law’s questions and topics of conversation to be so random and unexpected that they were like those little moles popping up.

I could use the same analogy for some of my friends with dementia. Their questions, comments, and subjects of conversation aren’t always predictable. As someone who gets sick of bland and boring small talk (“Hi, how are you?” “Fine, how are you?” “Good.”), I’ll take the refreshing Whack-A-Mole conversation anytime.

I was walking out of a nursing home last week and passed an older man who appeared to be sleeping in his wheelchair. When I walked by, he opened his eyes.

Without pause, he said to me, “I know a lot about tongues.” Yep. It was a Whack-A-Mole conversation, and I was all in.

“I’ve always wanted to meet a tongue expert,” I said without missing a beat.

And he was more than willing to teach me about tongues. First, he told me to open my mouth and show him my tongue. I obliged.

“Yes, that is a good one,” he told me. I was strangely proud. He continued talking about tongues. My tongue. His tongue. Tongues in general.

Here is what I learned about the tongue:

You might think that the tongue is a single muscle (I did), but it’s actually made up of eight muscles. In fact, you can think of it as a “little bag of muscles.” If people have bad breath, it is often because of bacteria on their tongue. Taste buds aren’t just on your tongue. They are also on the roof of your mouth and other places “around in there.” The average tongue is 10 centimeters long (but this guy said he had measured his a few years ago and it wasn’t quite that long). It’s hard to get an accurate measure of a tongue because of the gag reflex. A human tongue print is as unique as a fingerprint. Cats have special tongues that are rough so that they can be used for cleaning, but their tongues also pick up a lot of debris which is why they get hairballs. Oh, and people can get tongue cancer. He knows several men–but no women–who have had tongue cancer.

After the tongue lecture, I asked him, “How do you know so much about tongues?”

He pointed to his forehead, and his eyes lit up.

“Encyclopedia!” he exclaimed. And then he used his feet to turn his wheelchair around and headed off in the opposite direction.

I was left standing there watching him as he slowly moved down the hallway.

When I got home that night, I got on my laptop and Googled “interesting facts about tongues.” I realized that everything he told me about tongues was, in fact, credible. I hadn’t doubted him. It’s just that I’d given so little thought to tongues in the past.

I read an article on gratefulness while I was waiting in the doctor’s office a few weeks back. The article suggested identifying at least one “highlight” of the day when you go to bed each night. This is something that would usually make me roll my eyes, but I’ve been doing it. No matter how good, bad, or neutral my day was, I force myself to think about one positive thing that happened as I get ready for bed.

On this particular night, I thought to myself, I learned a lot about tongues today.

Whack-A-Mole.

 

 

 

 

Toilet Paper in Dementialand (aka Why Christmas Comes Faster Each Year)

As a kid, I thought Christmas would never come. I’d want something–a toy, a musical instrument, a jersey (because that’s all I wore when I was a kid)–and my parents would tell me I could have it for Christmas. Yet Christmas was an eternity away. And by an eternity, I mean about four months.

My birthday was the same way. I was five and wanted to be six. I was eleven and wanted to be twelve. I was fifteen and wanted to be sixteen. And I never thought that day would come.

As an adult, I find the opposite is true. I had a birthday recently. A few weeks before my birthday, my husband asked for gift ideas. The question took me by surprise because it seemed like I had just had a birthday. I say this with neither dread nor excitement, simply as an observation. My birthday comes around once a year, just as it always has. There was exactly one year between my ninth and tenth birthdays. Not coincidentally, there was the same amount of time between my two most recent birthdays. How come birthdays seemed so far apart when I was a kid?

And Christmas…I feel like it’s Christmas season about 80% of the year. In January we put the tree in its box (some years we even take off the ornaments) and store it in the basement. Then comes the cycle again–Halloween, Thanksgiving, Christmas–in the blink of an eye.

To be honest, it scares me. I work with older people, so I accept that I will someday grow old. More than that, I hope that I grow old because it’s a privilege that many people don’t get to experience. I don’t take it for granted. It’s just that life seems to be on fast forward. Sometimes I want to pause it or at least experience it in slow motion. I’m in a good place. I like it here.

In one of my first years of college teaching, a student in one of my classes had a seizure. I can’t say I panicked. In fact, I knew exactly what I needed to do, and I did it very confidently.

I said to my class, “I’ll be right back. I’m going to get a grown up.” I ran out of the room and found another faculty member who I apparently perceived as an actual grown up. For the record, I was 28. That’s the thing about how fast time goes…you forget that you’re older than you used to be. You forget that you’re the grown up.

Recently I had a conversation with my friend Jen about adulthood. She’s in her 20’s. I’m in my 30’s. Both of us feel like we are faking adulthood on some level. We don’t know if we’ll ever feel like adults, or maybe we just had the wrong idea about what it is to be a full-fledged grown up. You blink, and you’re 25, then 30, then 35…and I just turned 38. I’m not complaining about getting older; I just don’t know where the time went.

While visiting a nursing home, I got into a conversation about how time slips away faster and faster as I get older. (And I know that I am by no means “old.”) I was talking to a man in his 80’s who has dementia. I was telling him a story about how I once registered for a 10k and said I was 32 when I was actually 34.

“Life is like a roll of toilet paper,” he said. For a moment, I thought he was trying to quote Forrest Gump but was confused. I was wrong. He knew exactly what he was saying. I realized later that this is something Andy Rooney said as well.

He went on to explain that a toilet paper roll spins faster when there is less toilet paper remaining on the roll. It made sense to me. When the roll is full, it spins slowly. Yet when less remains on the roll, it begins to spin faster and faster. He explained this using overly dramatic hand motions–so dramatic I worried he was going to fall out of his chair.

“I thought my roll was on its last spin a couple years ago, but it kept on spinning,” he told me dramatically. “Now I don’t wanna blink because I’ll be dead before my eyes open.”

I had a few students with me, and they laughed awkwardly. He went on to explain something that I’ve thought for a long time haven’t been able to put into words. He told us that he was tired of people (most of whom are much younger than he is) complaining about getting older. He said that he was going to scream if he heard one more person turning 40 complain about their birthday.

“You’re 40 and you’re here. Be happy for that. You could be dead,” he said. When he said the word “dead,” he put his hands up to his neck, as if he were croaking. He could have been more eloquent, but I appreciated his bluntness. “Time flies. Don’t waste it by bitching that you’re 30, you’re 40, you’re 50. I’m 85 and I’m sitting here. I’m probably gonna drop dead before the evening news but at least I’m here now. I’m lucky.”

My students, again, laughed awkwardly, but they were listening. They seem fascinated by his monologue. He talked more about life….about how he refuses to complain about his aches and pains because aches and pains are better than being dead, about how he can’t bitch about using a cane when he sees people younger than he is in wheelchairs, and about how he thinks it’s ridiculous that a person can join AARP at 50–when they are “just a kid.” He thinks you shouldn’t be eligible for AARP until at least 70. He also talked about how his mom died 50 years ago, but he still sometimes waits for her to scold him when he says a bad word.

He told us that he can’t do everything. He can’t drive a car. He can’t play tennis. He can’t golf. Then he stopped to point out that he never could golf. He paused while he waited for us to laugh. We obliged, although I’m not sure my students got the joke.

On the way back to campus, a couple students and I had a philosophical conversation about life. It’s the type of conversation I always thought I’d have with students as a college professor but seldom happens except in the movies. Somehow, on our short drive across town, we talked about how our youth-centered society makes us dread aging and how we hate the term anti-aging…because they only way to stop aging is…well…you get where I’m going with this.

As we pulled into the parking lot, one of my students said, “That guy at the nursing home was kinda like Yoda. He was really wise and made me think.”

There is something about one of my college students comparing this old guy with dementia to Yoda that made my day–or my week–or maybe my whole teaching career. It was a good day.

I was talking to a colleague recently who said she hated “everything about growing older.” She complained about the wrinkles around her eyes, and she talked about how she can only eat “about 10 calories” a day without gaining weight.

I told her about my friend with dementia and his analogy about toilet paper. I told her what he had said about not complaining about aging—because you could be dead. I expected her to have an Oprah-style “aha” moment much like my students and I did during our conversation about how life is life a roll of toilet paper. She stared at me. She wasn’t buying what I was selling.

“Stop it with that crap. You’re such a gerontologist,” she said.

I guess people have to learn to accept getting older on their own terms. And I’m no Yoda.

History Lessons from Dementialand (Or How I Learned to Love History)

History wasn’t my favorite class in school. In fact, that’s a grand understatement. History was probably my least favorite class in school. (I’m kind of lying. Chemistry was actually my least favorite subject but I don’t often mention this because my dad was a chemical engineer and my apathy toward chemistry repeatedly breaks his heart.)

My feelings about chemistry aside, I was not a fan of history. I remember one of my high school history teachers. He had shaggy hair and wore tie-dyed t-shirts. He tried to make it interesting. I’m sure he did make it interesting for other people. Somehow, he didn’t make it interesting for me. That’s not a complaint about him. I feel like I probably owe the guy an apology. I never even tried to take an interest in what he was talking about.

College wasn’t any better. I made a decision to dislike every history class I had to take before the semester started. It didn’t help that I was dating a history major at the time. I didn’t understand how he could find this stuff interesting. He didn’t understand how I couldn’t.

When I finished college, I thought I was done learning about history. Little did I know that I was just getting started.

My friends with dementia have taught me more about history than I ever learned in school. That’s not a knock on my education. It’s a comment on my previous disengagement in the subject matter and a nod toward the opportunities I’ve had to learn from people who were around decades before I was. And some of them are pretty damn good teachers.

A man with Alzheimer’s told me that he was in a car with a group of guys who cheered when they heard on the radio that John F. Kennedy was shot. I asked him why they cheered and he shrugged. He said he guessed they didn’t like Kennedy. And that they were teenagers. He told me that teenagers are teenagers.

A women in her late 80’s who suffered from dementia told about what it was like to go through a divorce when divorce was stigmatized. Interestingly, she was the one who wanted the divorce, even though she knew it would leave her in poverty to raise a child. Her ex-husband found a new wife within a few months. It wasn’t so easy for her. She told me that men practically sprinted away when they found out she was divorced with a young child. She called it a double standard. She finally did get remarried…in her 60’s.

I sat at a nursing home once while a man told me about having tinsel on his family’s Christmas tree as a child. It was a product of the Great Depression, he said. People wanted decorations that were shiny to spruce up a Christmas tree with few presents underneath. Tinsel was cheap but somehow fancy. It made people feel a little richer when they were poor.

It occurred to me recently that this is history. If you know anything about dementia, you know that it is typical for long-term memory to outlast short-term memory. It is common for someone to have no idea what they had for breakfast but to be able to recall rich details of something that happened 40 years ago.

I’ve heard people say that the preservation of long-term memory is a gift—that it gives people with dementia time to pass on their stories before they disappear. I once had a woman with Alzheimer’s tell me that she wasn’t forgetting her past. She was passing it on. Unfortunately, not everyone has someone to pass their story on to before it is forgotten. Many experiences don’t seem notable enough to make the history textbooks, but that doesn’t mean they lack value.

Everyone has a story. Their story is about them, of course, but it’s also about the context in which they lived. It’s about when they lived. It’s about where they lived. It’s tied in with the headlines of the era but (to me) more interesting. That’s what I was missing about history when I was younger.

I meet many people who can no longer tell me their stories. I used to say hi to a woman at a nursing home when I’d visit to do staff education. She was slumped over in a wheelchair and could not speak. She couldn’t tell me her story. After she passed away, I learned more about her. She was a white teacher at a predominantly black high school in a rough part of Chicago. You could find her students hanging out at her house in the evenings, doing homework and eating cookies she had baked. Now there’s a story (and one you could probably make into a made-for-TV movie).

I like to joke that children frighten and confuse gerontologists like me. Contrary to popular belief, I like kids. They can be fun to hang out with (for a while). They say some hilarious stuff. And, similar to those with dementia, I often find myself enjoying their brutal honesty.

Kids, however, don’t have very interesting stories. It’s not their fault, of course. They just haven’t been here long enough to develop their stories. They also don’t get to make a lot of their own decisions, which limits the twists and turns their stories can take. Give me an 80 year old any day of the week.

When I was a kid, I read “Choose Your Own Adventure” books. You’d get the end of a chapter and have a message like, “If you want to go in the house and see what’s causing the noise, turn to page 33. If you want to call the police, turn to page 43.” You come to a crossroads, and you have to make the call.

How many times has an 80-year-old had to make a life-changing decision, whether they realized at the time it would change their life or not? More times than a kid…of course….which is why I’m a gerontologist and not a child psychologist. Older adults have life histories rooted in contextual details that I can’t fully understand—the Great Depression, the Vietnam War, the racial tension of the 60’s. The choices they’ve made are linked to the times and places they’ve experienced. People are not independent of historical context…because people are history.

I don’t know if it’s better to lose your short-term memory before your long-term memory or vice-versa. And it’s irrelevant to overanalyze this because we aren’t given a choice in what we lose when dementia strikes. A compromised short-term memory certainly impacts your daily functioning, and it’s one of the main reasons we have to limit the independence of those who have dementia. Having problems with your short-term memory is tough, and that’s an understatement.

However, I sometimes feel fortunate that it’s the long-term memory that sticks around when the short-term memory fails. To be honest, I am more interested in a person’s stories about what happened 50 years ago than their stories what happened this morning.

I guess I don’t hate history after all. I just didn’t really know what history was when I was in school.

The Awesome People I Meet in Dementialand

Sometimes I get on a streak where I write sad posts, and I’ve been on one of those streaks lately. To Dana and Sarah…I’m sorry I made you guys cry at work. I promised myself that today I would write something happier–at least less sad. So here goes…

I used to visit a particular nursing home quite frequently. I’d see a couple sitting by the nurse’s station. They were both in wheelchairs and looked quite frail. Sometimes they were holding hands. They talked a bit but not much. Their conversations didn’t make much sense to me, but somehow they seemed to get each other.  They had an undeniable connection and words seemed unnecessary.

I don’t know if they seemed happy…maybe comfortable is a better word. I usually said a quick hello to them as I passed. The man would just smile at me, and the woman would typically respond with a smile and a “Hi, honey.” Honestly, I didn’t really think twice about them or their relationship.

However, one day I entered the nursing home and noticed another woman sitting with them. She was well-dressed with fresh make-up and a bright smile. She had pulled up an uncomfortable-looking tacky floral chair on one side of the man and was holding his hand. The other woman, in the wheelchair, was sitting on the other side of the man and holding his other hand. As usual, I greeted them as I passed. The woman in the wheelchair responded, as did the other woman.

I couldn’t be sure of it at the time, but eventually I confirmed that the well-dressed woman was, in fact, his wife of over 40 years, who I will call Lynn. She lived about 45 minutes away and visited her husband, Joe, three or four days a week. She felt a bit guilty she couldn’t be there more, but she had a part-time job and also provided care to her grandchildren.

As time went on, it became my routine to make small talk with Lynn if she was present when I arrived at the facility. While we chatted, she would usually be holding her husband’s right hand while the other woman clung to her husband’s left hand.

The woman in the wheelchair? Her name was Zelda (or at least that’s what I will call her). She had Alzheimer’s, like Joe did. After Joe moved into the nursing home, he developed a sort of attachment to Zelda. When he saw her, he’d slowly maneuver his wheelchair close to hers and grab her hand. If he couldn’t find her, he’d use his shuffling feet to move his wheelchair around the building looking for her. If they were seated separately in the dining room, he’d move his wheelchair so he could eat next to her. The staff learned to seat them together. At one point, Zelda was admitted to the hospital. Joe seemed anxious while she was gone.

He didn’t know Zelda’s name, but if you asked him whose hand he was holding, he’d say, “This is my wife.” He’d usually follow with something like, “Isn’t she beautiful?” Once in a while, he’d kiss her hand or pat her knee.

One day I walked into the nursing home and saw that Lynn had brought ice cream sundaes from Dairy Queen. She was feeding Joe tiny bites. Zelda was right there, too. Lynn was feeding her bites as well. One bite for Joe; one bite for Zelda. All three were smiling. That was when I realized that Lynn was an incredible person.

As time went on, I learned more about Zelda. Her husband had passed away years ago. Her kids lived far away, and she seldom had visitors. She had been a nurse in the very same nursing home in which she now lived.

Early on, the staff to tried separate Zelda and Joe if they expected Lynn would be visiting. Joe’s caregivers liked Lynn, and they didn’t want to cause her any pain. However, that only worked for a few weeks. One day Lynn arrived and found Zelda and Joe holding hands by the nurse’s station. A nurse pulled her aside and apologized.

“She told me she knew it was hard for me to see him with her like that,” Lynn told me. “But it really wasn’t. It was a good feeling.”

My husband doesn’t have Alzheimer’s. I don’t know what it’s like to have a spouse who doesn’t recognize me. I don’t have a sense of what it’s like to see my husband holding hands with someone else–someone who he thinks is his wife. I have no idea how I would react in this situation. And I have no idea how others would respond if they were in Lynn’s shoes. I am curious how many would be able to say it was a “good feeling.” I’m guessing it wouldn’t be many.

Lynn liked the idea that her husband wasn’t alone when she couldn’t be there. She pointed out that she was only able to be there about a few evenings a week, and it brought her comfort to know Zelda would be sitting with Joe when she wasn’t visiting. Lynn even included Zelda when their family gathered in the nursing home lounge to celebrate holidays and birthdays. If anyone in Lynn’s family wasn’t comfortable with that, they didn’t mention it to Lynn. Zelda lit up when she saw Joe and Lynn’s grandchildren enter the facility. Lynn wasn’t about to tell Zelda she couldn’t hang out with them. A staff member told me that Lynn even bought Zelda a teddy bear and some of those fuzzy sock slippers for Christmas. They were the only presents she got.

As I got to know Lynn better, she told me that she feared Zelda would pass away before Joe, and then Joe would feel lost and lonely. She wondered aloud if she’d still visit Zelda if Joe died first. It bothered her to think of Zelda not having any visitors.

I told you this wouldn’t be a sad post, but maybe that was a bit misleading. It is undeniably sad that Alzheimer’s can cause a loyal spouse to literally forget he has a wife. It can make a man unaware that the person whose hand he is holding isn’t the person to which he committed to for life. It can cruelly rob individuals and their loved ones of the relationships that are most important to them.

And that’s why, as Lynn told me, you can’t take the pleasures and comforts that it leaves behind.

“Alzheimer’s has taken so much from him. I’m not going steal one of the few comforts he has left,” she said, referring to Zelda.

I find that the most amazing love and most incredible kindness are often found in the situations that seem the most hopeless. Lynn never expected her husband would have Alzheimer’s. She never expected he’d forget her or that he’d spend his days holding hands with another woman. Somehow…and I don’t know exactly how…when she found herself in that situation, she fed them both ice cream and did it with a smile. And she bought her husband’s friend new slippers.

When asked about it, she says with a shrug, “Well, what else am I gonna do?”

There are some awesome people in this world.

And that’s why this post isn’t (all) sad.

Taking John Home to Die in Dementialand

In one breath, she tells me that she’s ready for him to go. In the next breath, she says that she’ll never be ready for him to go. Then she tells me that he’s already gone.

That’s what Alzheimer’s does.

Last week, a friend of mine, Heidi, took her husband home to die.

I first met Heidi a few years ago when she took a fitness class. I happened to be the instructor. As Heidi tells it, she hated the class but loved me. She says she loves me more now that I’m not telling her to do squats.

Her husband, John, is in his late 60’s. He was diagnosed with Alzheimer’s about five years ago and then with cancer in the spring. Heidi was taking care of him in their home until a few months back when John fell down the stairs.

She was forced to call 9-1-1 when she found him. They hauled him to one hospital and then (for some reason neither Heidi or I understand) to another one. They loaded him up with IV antibiotics to treat a urinary tract infection. The social worker at the hospital recommended that John be placed in a nursing home for “rehab,” and Heidi hesitantly agreed.

It was only a few days into his stay at the nursing home when Heidi received a call that John was back at the emergency room. She rushed to the hospital to find John alone in a treatment room, terrified, with a sling on his arm. He had somehow fallen out of bed and broken his arm. She tried to comfort him, but he seemed apprehensive of her. It was the first time he didn’t recognize his wife.

The emergency room doctors performed what Heidi called a “ridiculously extreme” number of tests. They gave Heidi a laundry list of what was wrong with John. Of course, they proposed some solutions. Heidi was smart enough to know that these weren’t permanent solutions, and probably weren’t even temporary solutions. All of the proposed treatments carried their own negative consequences. A family member asked if a pacemaker might be an option for John’s failing heart. Heidi knew he wouldn’t survive a surgery like that, but when she told someone else this, they said she shouldn’t give up.

The atmosphere at the hospital was chaotic and agitated John. Heidi wanted him out of there, but he was admitted for a few nights. A few nurses mentioned that he was being “uncooperative” and hoped that maybe Heidi could have a talk with him. His Alzheimer’s had progressed to the point that he didn’t say much, but when something came out of his mouth, it was usually “Goddammit!” or “Holy shit!” He had a roommate who was (justifiable) annoyed with John’s outbursts when they kept him up at night.

“He’s not uncooperative,” Heidi ranted. “He’s not being a jerk…he has Alzheimer’s.”

After a few days at the hospital, he was discharged to a nursing home. This time he went to a different nursing home that was “better equipped” to meet his needs, according to the hospital social worker. Heidi thought the new nursing home was cleaner and found the staff to be more professional. However, it was also about 45 minutes from her home. She settled into a routine that included an hour and a half in the car each day.

She told the staff that she knew John was nearing the end of life. She stressed that he had a “Do Not Resuscitate” order and she wanted his comfort to be the priority. She told the director of nursing about how stressful the last hospital stay had been for both of them and how she felt it had made his situation worse rather than better, anyway. The staff was understanding and empathetic.

Yet, an ambulance was called for John one morning before Heidi arrived. The nursing home staff had wondered if he had experienced a stroke. Once again, she arrived at the hospital to find John alone in a treatment room. He was trying to get up on his own. Heidi says if she hadn’t arrived when she did he would’ve ended up flat on the floor “like a pancake.” After a multitude of tests, they decided that John had not had a stroke.

Heidi called me that evening, and I asked her something I should have asked her months earlier.

“Have you considered calling hospice?” I asked.

She said that someone told her that hospice wasn’t an option for a person living in a nursing home. I asked her who told her this, and she told me that she couldn’t remember but thought it was someone at the nursing home. I promised her that hospices do serve individuals in nursing homes. She made a couple of phone calls the next day.

With the assistance of hospice, John was eventually transported home from the hospital rather than back to the nursing home. Heidi hadn’t realize that going home with support from hospice would be an option, so she was ecstatic.

“I’m like Dorothy from the Wizard of Oz,” Heidi told me. “There’s no place like home.”

She asked me why no one had told her to call hospice sooner. I explained that John had been hopping from doctor to doctor, from hospital to hospital, from nursing home to nursing home, and when that happens sometimes medical professionals assume someone else will have the “hospice talk” with a patient and their family.

As for why I didn’t say anything to her sooner….I assumed someone else would. I thought it wasn’t my role. I didn’t know how to bring it up. Really, though, I just dropped the ball.

John’s at home now. Nurses come by, but he doesn’t see a doctor anymore. Heidi is okay with that. There are no more medical tests. There are no more annoyed hospital roommates. Hospice even sends a volunteer twice a week so that Heidi can go out to eat with her friends. The volunteer even does the dishes while she is gone. If there’s a crisis, Heidi calls hospice rather than 9-1-1. She feels guilty that she calls so much.

John spends most of his time sleeping in the hospital bed that hospice delivered to the house. After much discussion, the bed was placed in the living room where John can look out the sliding glass doors into the backyard. Heidi sleeps in a recliner next to the hospital bed. The bed is angled so he can see the leaves as they change colors. No one is sure whether or not he is actually able to see the leaves, but Heidi doesn’t like idea of him looking at a white wall and ceiling on the rare occasion when his eyes are open.

Heidi tries to readjust him every few hours so he doesn’t get pressure sores, but she’s noticing his skin is getting thinner and more fragile. He seems to wake up in a panic sometimes, but he usually calms down quickly. Eating has become challenging. She puts pureed food in his mouth, but he’s forgotten how to swallow. The hospice nurse taught her a few tricks, but they don’t work anymore. A family member keeps mentioning a feeding tube, but Heidi won’t consider it. The hospice nurse has told her that a feeding tube would only make John less comfortable. Heidi has no idea if John is in pain, but she gives him pain meds just in case. He’d never be able to tell her if he was hurting.

In hospice, the term “actively dying” is used to describe a person in their last 24 to 72 hours of life. Heidi is told that John isn’t there yet. She feels like his work here is done, and she knows that he wouldn’t want to linger like this. He would hate that her life is on hold while he’s dying. She feels like he’s not living, but he’s still here anyway. She knows she’ll feel relief when he passes, but she doesn’t know if that will be the overwhelming emotion. Maybe it’ll be sadness. Or anger. Or denial. Perhaps they will all be mixed together and she’ll have no idea what she is feeling, but she knows relief will be mixed in there somewhere.

“I know people who have lost their husbands when they still had little kids, so I can’t complain,” she tells me. “We’ve had a pretty good run.”

In one breath, she tells me that she’s ready for him to go. In the next breath, she says that she’ll never be ready for him to go. Then she tells me that he’s already gone.

That’s what Alzheimer’s does.

The Cubs Always Win in Dementialand

What I’m about to say is even more shocking if you consider I am a St. Louis Native and forever obligated to root for the Cardinals. In fact, one of my vivid memories about the day my Grandma passed away was that we had the Cardinals game on in her hospital room. We knew she was leaving us, but my family didn’t want to miss the game. (And I guarantee you that my Grandma would have thought it was weird if we had turned the game off just because she was in the final stages of her life.)

Here goes…

I must tell you that I am happy that the Chicago Cubs are in the playoffs. Do not tell my family this. I may not be welcome at family Christmas anymore. At the very least, someone might spit in my green bean casserole. I do hope the Cardinals beat them in the National League Division Series, of course, but I’m glad the Cubs made it this far.

I have a thing about rooting for the underdog. It’s most prominent during college basketball’s March Madness when I sit in front of three TVs at once in our living room (thanks to my husband for the NCAA Tournament TV arrangement) hoping to see a 16-seed beat a 1-seed, but I do it with other sports as well. From that perspective, it’s not all bad to see the Cubs in the play-offs.

There’s something else as well, though. There’s another reason I smile because the Cubs have the 3rd best reason in baseball in 2015. It’s because of a guy I know whose name is Paul.

Paul has always been a Cubs fan, and he’s been through losing season after losing season, never allowing his loyalty to waver. Something odd happened a few years that made Paul’s family realize that perhaps Paul was having some difficulties.

They’d walk into the family room and see Paul watching a Cubs game on TV, just like he had done for most of his life. They would ask who was winning.

“Cubs,” he would respond. However, they’d glance at the TV and realize that the Cubs weren’t winning. It was the first dementia symptom that they noticed. They told friends that they were concerned about Paul–because he thought the Cubs were winning when they weren’t. Friends shrugged them off. Paul probably just wasn’t paying attention. Or maybe it was something with his eyesight. His wife, however, knew there was a problem. She was frustrated when their family doctor wouldn’t listen.

About six months later, she became more concerned. She would walk into the family room when Paul was watching a game and ask who was winning. He’d tell her the Cubs were winning, but she’d glance at the TV and realize that not only were the Cubs not winning, they weren’t even playing. Maybe it was the Cardinals and the Pirates. Or the Phillies and the Mets. But not the Cubs. At this point, Paul was showing other symptoms. He had gotten lost driving in their small town. He seemed more irritable and got his feelings hurt more easily. Furthermore, he no longer wanted to spend time with friends. He preferred to sit home alone and isolated himself.

After he was diagnosed with Alzheimer’s, he continued to spend a lot of time in front of the TV watching sports. When his family asked who was winning, he would tell them that the Cubs were…except now it wasn’t always baseball. Maybe it was hockey, basketball, or football. He once insisted that the Cubs were winning a 4×100 relay.

His wife told me that this used to break her heart. Paul had been a loyal and knowledgeable sports fan. Now he couldn’t even tell if the Cubs were winning, or playing, or even if he was watching baseball. Over time, she developed a new perspective. She stopped correcting him. In fact, she would smile and act pleased when the Cubs were winning. Sometimes she went as far as to cheer for them, even when they weren’t playing.

She told me, “The Cubs don’t win a lot in the real world. He deserves this.”

I guess the Cubs always win in Dementialand. And last night Dementialand wasn’t all that different from the world most of us live in. The Cubs beat the Cardinals, 8 to 6.

Policing Dementialand (aka Thoughts on Dementia-Friendly Communities)

We tend to judge an occupation by its worst members.

We meet a few doctors with poor bedside manner, and we think doctors don’t genuinely care about their patients. We have a few arrogant professors in college, so we say all professors are arrogant. We perceive one lawyer as sleazy, so they all are.

It’s a cognitive shortcut. It’s easier for our brains to put all people in an occupation into one category than evaluate them as individuals. That’s the basis of a stereotype.

There’s a problem with this, of course. The problem is that not all doctors are the same. Not all professors are the same, and not all lawyers are the same. If you see the pattern here, feel free to insert your own occupation. I bet you will agree.

It doesn’t matter what profession you are talking about…some people are better at their jobs. Some people are more ethical in their work. Some people make more mistakes. And some people just don’t pull their weight.

An ongoing conversation in our society that has been of particular interest to me relates to police officers. I’ve heard a lot of discourse in the past 15 months about cops. Obviously, much of it portrays a negative perception of cops in our country. However, I’ve also noticed a strong rebuttal and a show of appreciation for what cops do.

I’m not an expert in criminal justice, but here’s what I do know. I know that cops make mistakes, just like people in other professions make mistakes. (If you think you’ve never made a mistake in your job, you’re mistaken. Have I made mistakes in my job? Absolutely.) Because of the nature of police work, mistakes can be incredibly costly. I’m not willing to discuss issues like racial bias here, but I am willing to say that some cops are great at their jobs and others are not as great at their jobs. And that is true for every profession.

I am fortunate to have three police officers who are close to my heart. My father-in-law, Bill, has served his community for about 30 years. My friends, Jen and Shannon, are newer to the profession. All three of them care about people. All three of them are in the field because they want to make a positive difference in the community. All three of them work shifts that make them miss events with family and friends–and rarely complain. It’s an understatement to say that I admire them. In fact, I got called for jury duty and my statement of admiration for them when asked if I had any biases toward cops was probably why I didn’t get picked for the jury.

Jen sent me a late night text this summer that said, “It’s hard policing dementialand,” and we both knew that I would soon write a blog post called “Policing Dementialand.” I’ve given thought to interactions between cops and older individuals, particularly those with dementia, in the past, but Jen has given me a new perspective.

I’m proud to say that I was there to celebrate when she finished the police academy. I was proud of her when she got a job offer. I was proud of her when she passed her training period as an officer. I was even proud of her (and also bummed for her) when she jumped a fence following a K9 officer who was tracking a suspect and broke a bone in her shoulder.

However, I’m not sure I’ve ever been more proud of her than when she told me that she found a woman with dementia who was wandering and used dementia-friendly communication techniques to figure out where she lived–even though the woman didn’t know her address. She’s also been called to the house of a woman with Alzheimer’s who thought someone had been breaking in and stealing her belongings. Jen doesn’t know the term “validation therapy” (and she doesn’t need to) but that’s what she used to deal with the situation. She even thought to remove the medication of the woman’s deceased husband from the home so she wouldn’t accidentally take it. She’s also had to negotiate drivers who likely had dementia, which is no easy task. I’ve started calling her the “dementia whisperer.”

She says it’s because she reads “this blog by this professor she knows,” and maybe that’s part of it. To be fair, she’s also been forced to listen to me ramble on and on about Alzheimer’s and other dementias. Yet, I think it’s more than that. She wants to help people and strives to be good at her job. I’m happy if my blog (and my endless talk about dementia) has helped in a small way, but she has sought out that knowledge and has been able to apply it on the fly when situations arise. If we give more cops education on dementia, I think more of them can be “dementia whisperers” like Jen.

I hear many stories of how police officers have not made sound decisions in regards to individuals with dementia. I want to make it clear that in many of these situations the cops are well-intentioned. They just aren’t educated on how to work with people who have dementia.

I hear a lot of talk about making communities more “dementia-friendly.” This means that we need to provide basic dementia education to those who serve the community. They don’t need to understand genetic components, the parts of the brain, or the (lack of) effectiveness of available drugs. They do need to understand how to approach and communicate with people who might have dementia. They need to know how to avoid making individuals with dementia agitated and anxious.

I recently did a series of trainings on dementia for area bus drivers. Many of these bus drivers transport people with dementia on a daily basis, and yet don’t have a working knowledge of dementia skills. They are asked to help people get on and off the bus, as well as take responsibility for the safety of those on the bus. Yet, we have not given them the knowledge to do this effectively. (To give you an idea of their level of knowledge, a bus driver came up to me after a training to ask if Alzheimer’s was contagious. It amazed me–and in a way impressed me–to think a guy who wasn’t sure if Alzheimer’s was contagious worked with people with Alzheimer’s regularly…or maybe he needed the paycheck that badly.)

I know a lot about dementia. I read a lot about it. I talk a lot about it. However, I only spend about three hours a week on average with people who have dementia. There are people who spend more hours a week with those who have dementia and have much less education. And that’s not a criticism of those people. We can’t expect people to have skills and knowledge we don’t teach them. That’s not fair to them. My goal is to educate our communities so they will be ready for the challenges associated with the increasing number of individuals diagnosed with Alzheimer’s and other types of dementia. We aren’t there.

 

Note: The Alzheimer’s Association has put together what I would consider “Cliff Notes” for law enforcement officers working with individuals who have dementia. Check it out:

http://www.alz.org/national/documents/safereturn_lawenforcement.pdf

And if you are within reasonable driving distance, you could probably convince me to come do a training.

 

 

 

 

 

 

The Most Difficult Dementialand Post I Have Written to Date (aka What Dementia has in Common with Depression)

This was not the post I intended to publish this morning. In fact, I have a post written on police officers and how they work to help those with dementia…but that has to wait until next week.

My heart is somewhere else right now.

Wednesday there was a suicide on the college campus where I work as a professor. Her name was Katie, and I didn’t know her. In fact, this was her first semester here. Her peers and professors tell me she was well-liked and bright with a smile that lit up a room. She had plenty of friends and a supportive family. Yet, she struggled with depression and anxiety.

The more I hear about Katie, the more I relate to her. I even lived on the same residence hall floor where Katie lived and died. I’ve never been in a position where I considered taking my own life, but I was once a college student with clinical depression. I felt like a failure because, despite knowing I was loved and feeling like I had a bright future, I couldn’t find a way to get rid of a plague that kept me from being me. I lost a drastic amount of weight. I was exhausted but only slept a couple of hours a night. I just wanted to feel normal. I knew there was nothing in my life horrible enough to warrant how I felt, but I still couldn’t make myself feel better no matter what I tried.

This continued for three months before I marched myself to the student health center and said I thought I had depression. The nurse treated me with strikingly little compassion. Little did I know it was the beginning of a journey (still on-going) of working with health care providers with various levels of knowledge and kindness. I got through it, though, and very slowly things got better…until they got worse a couple of years later. I survived that, too, and I’ve survived a few more major depressive episodes since. I have no doubt it’ll happen again, and I’ll endure that as well.

Fifteen years later, I’ve finally come up with a way to describe depression…or at least my experiences with depression. It’s like getting a phone call with tragic news (like the death of someone you love or finding out a family member has cancer). Your stomach turns. A weight settles on your shoulders. You don’t know how you will cope with whatever news you’ve just been given. You don’t know what to do next. That’s what I feel like when I’m depressed–except there’s no tragic news. I walk around carrying that feelings for days or weeks at a time. It still happens, but it’s less scary than it was that first time. It’s less scary because I know that I won’t always feel that way. It can and will get better.

I’ve come to terms with taking anti-depressants for the rest of my life. They don’t cure depression, but I don’t know where I’d be without them. (And, yes, I am prepared for the onslaught of emails and comments I may receive about how I should stop taking anti-depressants and—insert your genius solution here—turn to God and more specifically YOUR church, eat more good fats, find a good chiropractor, etc.) I don’t think everyone should be on an anti-depressant. I think there are many people who will need them at certain points in their life but then be able to stop taking them. And then there are people like me…who may have to take them their entire life. Ten years ago my goal was to wean myself off anti-depressants. Now my goal is to be happy.

One of the most difficult aspects of being a person with depression is listening to other people make comments that imply you just aren’t trying hard enough to be happy, that you’re making a decision to be miserable, or that you just have a bad attitude. I have been told that I have no reason to be depressed and that there are lots of people worse off than me. People have said that I just need to think more positively. When I have been at my lowest, I have been told to cheer up. (Gosh! If only I had thought of that! How helpful!) It’s similar to telling someone with no legs to go run a 5k. Depression is an illness, not a choice.

A few years ago, I overheard a conversation at a nursing home that helped me relate to people with dementia on the basis of my own depression. A nurse asked a resident if she had eaten her evening snack yet. The resident said she didn’t remember. The nurse told the resident that she wasn’t supposed to give her more than one snack, so she’d have to think really hard to remember if she’d eaten her snack. The resident, understandably, got angry.

“Don’t you think I’d remember if I could?” she asked. “Do you think I’m just not trying?”

Not all people with dementia have that much insight, but she had a point. And I made a connection.

There are people who think having depression means you’re just not trying hard enough to be happy. There are also people who think having dementia means you’re just not trying hard enough to remember.

Physical illness and injuries are easier to understand–not just for those around us but for us. I’ve had kidney stones and knee surgery. I never felt betrayed by my kidneys or my left knee. I have felt betrayed by my brain when I’ve struggled with depression. While my kidneys and my knees are part of me, my brain is…me. I feel like my battle with depression is a battle against myself. And it’s hard to wrap my mind around that. How do you separate your illness from yourself when your illness is at the core of who you are (your thoughts, your emotion, your cognition)?

Someone with Alzheimer’s once told me that she felt like her brain was cheating on her. It was a traitor. She told me that she was trying so desperately hard to do everyday things–things that came easily to her in the past–and her brain just wasn’t on board. When she was trying harder than she ever had in her life, people around her were doubting she was trying at all. Her awareness of this made me particularly sad, but I am sure many people with dementia have similar feelings whether or not they are able to express them.

A few years ago, I had a college student who had been in Iraq. He came home with a brain injury that caused dementia-like symptoms as well as anxiety and depression. I tried my best to accommodate his desire to continue as a college student and finish his degree. One day in my office he made a comment about being jealous of veterans who came home with more “visible” injuries, like amputations. He told me that they were always being thanked for their service and called heroes. He felt he was just perceived as a slacker who had given up on life–when he was trying harder than he had ever tried before. For days, I thought about how ridiculous it seemed that a person would be jealous of someone who lost a limb at war, but I really did get it.

Physical injuries and illnesses are somehow more legitimate and heroic than health issues that we cannot see with our eyes. I’ve seen this phenomenon when people with dementia are humiliated for not remembering loved ones (“You know who that is, Grandma!”). We do a better job of being understanding when someone can’t walk than when they can’t remember. We can see their legs wasting away, but we can’t see that their brain showing signs of decay and shrinkage…even when that’s exactly what may be happening.

This post is a bit of a “coming out” for me. I’ve come a long way from being that depressed college student living on the 5th floor of Bender Hall. I still have depression. I’m not cured, and I’ve accepted that I never will be.

I hesitated to publish a post where talked about my own struggles with depression. In fact, I even sent a text to two friends last night who I knew would encourage me to go ahead and hit “publish” because I knew I needed the push.

I am ashamed to admit that I hesitated to publish this because of the stigma that surrounds mental health issues like depression. However, that’s not fair of me. It’s not fair of me to be “in the closet” about my depression when I continually applaud people with Alzheimer’s and other dementias for speaking out in a world that still stigmatizes dementia.

I can’t encourage people to speak out about dementia if I’m unwilling to speak out about depression.

Let’s get over the stigma.