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?

 

 

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.

 

 

 

 

 

 

Mean Listening Face in Dementialand (or the Importance of Non-Verbal Communication)

I was diagnosed by my husband as having an affliction called Mean Listening Face about four years ago.

A college student that I had in class previously was at our house for pizza. She was telling me about how she had recently applied for a few positions at non-profit agencies. She looked at me and stopped in the middle of a sentence.

“Oh, is that not a good place to work?” she asked me. I had no idea why she was asking me this.

My husband jumped in and said matter-of-factly, “Elaine isn’t intending to give you that look of disapproval. She just has Mean Listening Face.”

This was the first I had heard of my Mean Listening Face. I didn’t argue with my husband, and there was no further discussion of this affliction between the two of us.

A few days later, I was out to lunch with a friend. I decided to ask her if I had Mean Listening Face. I anticipated that she would ask me what the heck I was talking about and then tell me that my husband was crazy.

Instead, she said, “Yeah, I totally see where he’s coming from. I don’t know if you’d make a good counselor.” I went from being annoyed that my husband was overanalyzing my behavior to wondering why no one had told me this sooner. Seriously, friends…you should’ve done an intervention long before this.

I went home and looked in the mirror. I tried to pretend that someone was telling me something important and personal. Sure enough, I got these lines on my forehead and my eyes got intensely squinty. Yep. I had Mean Listening Face.

I realized that when I concentrated on what someone was saying…when I really wanted them to know that I cared…when I was processing what they were saying with all of my attention…I looked annoyed. I looked angry. I looked like I was trying to shoot bolts of fire out of my eyeballs. It’s a great face for playing cards when I don’t want anyone to know what I’m holding, but not a great face for empathetic listening.

You might think this is a small thing, but it’s really not. College students come to my office and need assistance. They may be struggling with college life or feeling like they don’t belong. They might not know what major to choose or what direction they want to go in life. I’ve even had students who are dealing with depression or anxiety. And what do I do? I give them Mean Listening Face.

And then there’s the work I do with dementia caregivers. In my conversations with them, it occurred to me that I might be giving off Mean Listening Face when they were depending on me to reassure them. Most of all, my husband’s diagnosis of my Mean Listening Face made me realize that perhaps I wasn’t giving off the vibe I intended to when I spent time with individuals with dementia. As dementia progresses, the words themselves become less important. The non-verbal cues become more important. In time, they become everything.

It’s about body language. It’s about facial expression. It’s about tone of voice. Dementia can destroy a person’s capacity to understand language. However, the ability to decipher the non-verbal aspects of communication remain much longer.

And the non-verbals are pretty important for those of us who don’t live in Dementialand. I have to admit that I get annoyed with college students who sit in class and roll their eyes at me. (I have actually dropped my attendance policy because I prefer students who roll their eyes at me just not come to class.) Then there are those who sit in the front row and make eye contact. When a student asks for a letter of recommendation, I have to wonder if their non-verbal communication with me is just as important (if not more important) than their verbal communication.

I had a series of several doctor appointments and an ER visit last spring that ended in a diagnosis of a separated rib. (Apparently you can have a separated rib even if you have no idea that you’ve had a traumatic event that may have caused a separated rib.) This was after misdiagnoses of a hernia, a kidney stone, and a urinary tract infection. Visiting several doctors in a span of a few weeks made me realize the importance of non-verbal communication in the medical industry. One doctor who saw me made me feel like everything I said was important to him. He made me feel like he genuinely was concerned about my level of pain. After leaving the office, I realized that he hadn’t said anything different than the other doctors I visited. It was how he said it.

While receiving the “right” non-verbals can make your day, receiving the “wrong” non-verbals really put you in a foul mood. I recently sat on an airplane next to a person who made it his goal to take up as much of my personal space as humanly possible. Without exchanging a word, we engaged in a battle. It was a battle of non-verbals. A battle of physical space. A battle over tray tables, carry-on space, and arm rests. A battle that I lost and let ruin my afternoon. I’m getting angry again as I think about it. Yet, not a single word exchanged during the two hour flight.

I’ve heard that 70% of communication is non-verbal. My theory is that this percentage increases as dementia progresses. When someone approaches end-stage dementia, how we say something is more crucial that what we say. And showing people that what they say is still valued–by eye contact, posture, facial expression, and touch–may be more important than our verbal response. People read physical cues long after they become unable to decipher words and sentences.

Last year I was visiting an adult day center and talking to a guy with vascular dementia, Bob. Bob is one of my favorite people. He is what I like to call “pleasantly confused.” He cannot tell you what year it is or where he is. In fact, he once asked me if I had come to see him so I could “shave his sheep.” (His family later told me that he had not been a farmer and had never owned any sheep.) Everything he says, however, is delivered with a huge grin. He has a laugh that lights up the room–even if the people in the room have no idea what is so funny.

Bob was telling me a story about a dog he had that ran away and came back home with a litter of kittens and a baby skunk. I have no idea if this story was true, partially true, or not true at all, but it was a really good story. And I had no interest in figuring out if it was true. It didn’t matter. It was the funniest story I had heard in a long time. However, I had to be back at the office for a meeting, so I took a quick glance over Bob’s shoulder at the clock.

“You’re in a hurry,” he said, stopping the story. “You’ve got things to do. You’d better go.”

My heart sank. I was upset at myself for giving Bob the impression that I was in a hurry and spending time with him was not a priority. Furthermore, it blew my mind that a guy who seemed so out-of-touch with reality noticed my split-second sneak peak at the clock. I was busted. On that day, I failed with my non-verbals, and I ruined a great story.

I’m working on my Mean Listening Face. It’s a conscious effort. When interacting with someone with dementia, I sometimes silently tell myself to relax my eyes and stop clenching my jaw. Actually, I do this when I’m talking to people who don’t have dementia as well. I’m hoping this will also help to prevent wrinkles as I age, but that’d just be icing on the cake. If you think you might also have Mean Listening Face, let me know. Perhaps we can start a support group.

Outside of Dementialand, words can connect us efficiently. Yet, the deepest and most intimate connections are based beyond words. No place is this more true than in Dementialand…where words often fail us. If we want to connect heart-to-heart with people as they move toward the end of their dementia journeys, we must sometimes forget words and speak a different language.

Praying for the End in Dementialand

I was 23 when my grandpa passed away. He had a lot of chronic health conditions, including diabetes, and he’d recently had a leg amputated. The last time I saw him in person, he kept calling the guy I was dating at the time “Steve” (although his name was not Steve) and he was very grateful to “Steve” for helping him figure out the remote control to his crappy TV at the hospital. The last time I talked to him on the phone, he was telling me about a church picnic that he had attended. He mentioned he brought brownies in a basket. There had been no church picnic.

I remember sitting on the bed in my small grad school apartment with my black cat, Teela, as my mom called me to tell he that he died. It seems surreal that I still have Teela (although now she has three doggie brothers and a feline sister–oh, and a dad!) and am looking at her in her kitty condo as I type this today. It seems so long ago, but I guess it wasn’t that long ago because I still have Teela–although she is a bit heavier and moves slower…I could say the same about myself though.

I asked my mom if she thought I should call my grandma to express my condolences. To be honest, I wanted her to tell me not to bother Grandma. I was a little nervous to make the call. I didn’t know what to say. When Grandma answered the phone, she launched into a story about the Red Roof Inn she was staying at near my grandpa’s hospital. She had spent a lot of nights there, and they were kind enough to not charge her for the night my grandpa died. She was absolutely overwhelmed by their kindness. I think of this every time I see a Red Roof Inn to this day.

I didn’t really know what to say when she paused after praising the employees of the Red Roof Inn, so I blurted out, “I’m sorry about Grandpa.”

“Oh, honey,” she said. “I was praying for the Lord to take him. I knew he wasn’t gonna be strong enough to come home after losing that leg. It was the best thing.”

The best thing?

At that point in time, I had this idea that we all should fight for our lives to the bitter end. I saw death as failure, not as a natural part of life. And I wasn’t sure what I thought of someone hoping and praying for a loved one to pass away.

In a way, I was glad my grandma accepted my grandpa’s death on some level. On the other hand, I couldn’t wrap my mind around the notion that my grandma prayed for my grandpa to die. I can assure you that the experiences I have had between then and now have absolutely allowed me to wrap my mind around this.

I was speaking with a woman recently whose husband has a type of dementia that can progress very quickly. I pointed out that this rare type of dementia has a shorter life expectancy than Alzheimer’s and most other types of dementia. I had only known this woman for about…3 minutes…so I worried that I’d said too much and was perhaps being a bit pessimistic and blunt when I had no idea where she was at with this.

“Oh, thank God,” she said. “The quicker this progresses, the better.” Then she looked horrified, like she couldn’t believe she said this to me.

There are many people who live well with dementia. Unfortunately, her husband is currently not one of them. And she wants this over as soon as possible, for him and for her.

Then she asked, “Am I a bad person for wishing he dies sooner rather than later?”

I wasn’t quite sure how to respond. It seemed like a question for a ethicist, pastor, or philosopher rather than for me. All I could do was reassure her that her feelings were normal considering the circumstances. She was absolutely right that he seems to have little quality of life. He spends most of his day in their bed–but with his eyes open–and he gets upset if she tries to turn on the lights or the TV. He recently told their kids that he was sorry he ever had them, and he had even become aggressive toward one of his grandchildren. She also pointed out that he’d be really upset if he realized that all the money he had worked so hard to save would likely be eaten up by a nursing home.

So, are you a bad person for hoping that your loved one with late-stage dementia passes away rather than lingers on? Absolutely not. This is normal. It’s also normal that you might wish for them to pass away in one moment but in the next minute be willing to do anything to keep them on this earth.

And when they do die, it is normal to feel guilty that you wished that they would pass away and then want them back. It is normal to feel a variety of emotions when a loved one with dementia dies, but one of those emotions may be relief. And–no–none of this makes you a bad person. It makes you human.

If someone says to me that they want their loved one to “go quickly” or “leave soon” or any other euphemism we can use to avoid the actual term “death,” it may be partially from a selfish place–because being a care partner is demanding.

However, I find that more frequently it has nothing to do with the care partner and everything to do with the person with dementia. While some people with dementia live a life worth living right up until the moment they depart, we cannot say that everyone with dementia has a positive quality of life from dementia to death. It’s just not true. Alzheimer’s, Huntington’s, Lewy-Body Dementia, frontotemporal dementia…these can be cruel diseases.

When we look at our loved ones and see depression, anxiety, and pain (physical and emotional), we may hope for death. Don’t beat yourself up if you pray every night for God to peacefully take your parent, spouse, or sibling. No judgment here. And if you attend a dementia caregiving support group and mention that you are ready for your loved one to pass away, you will see a chorus of nods and knowing looks.

I fully anticipate that this post will offend someone. And I am offended as well. I am offended that dementia causes such suffering that one would at some point hope for death for a family member or friend–and that as a society we haven’t been empathetic or supportive enough to those in the midst of this journey.

Habits of Sane Caregivers in Dementialand

Sometimes I write for people with dementia. Sometimes I write for people who have no experience in Dementialand. But today…today I am writing for dementia caregivers. And, really, for all caregivers.

If you are a caregiver, things can get pretty rough. I can show you research studies on the rates of clinical depression among caregivers. Spoiler alert–they’re astronomical. (They’re high among caregivers and higher among caregivers of those with dementia.)

Your life has to be lived one day at a time…maybe even one minute at a time. You get angry. You want to say that you’re angry at the disease and not the person, but I know that sometimes it’s not always easy to separate a person and a disease when you’re living on a couple hours of sleep a night.

All caregivers struggle. Some struggle outwardly; others seems strong on the outside but bury their struggles inwardly. You are not alone in your struggle–but I know it seems that way sometimes. Maybe your family is supportive, but it’s likely some of them make your life more difficult rather than easier. I’m guessing some of them make you crazy. Maybe you’ve got some friends…but some of them probably just don’t get it, even if they try.

I’ve put together a list of habits that I typically see in caregivers that maintain their sanity. [And–let me state for the record–a caregiver that stays sane might sometimes feel like they are losing their mind. They might cry. They might get angry. Maybe they sometimes make poor decisions. They mess up (we all do, right?). They could be on Lexapro or another anti-depressant. But they get through…day by day…minute by minute.]

Habits of Sane Caregivers

1. They sleep. Sure, maybe some nights are better than others. But they find a way to sleep. And, when they start getting an unacceptable amount of sleep each night on a regular basis, they find a solution. Maybe this means having someone watch their loved one a few afternoons a week so they can take a nap. If anxiety keeps them from sleeping, they go to a doctor or a counselor. They understand that they can’t caregive without sleep.

2. They leave the house. I know a guy who cared for his grandma who had Alzheimer’s. At one point, he went over a week without leaving the house except to shovel and take the trash out. When other people heard about this, they thought of him as a hero. Staying in the confines on your home doesn’t make you a hero. It sets you up for depression and stress–which sets you up for sub-par caregiving. Get the heck out of the house once in a while.

3. They understand that others can give care, too. A husband I once talked to loved his wife so much that he wouldn’t leave her side….24/7. He didn’t trust anyone else to take care of her. He thought he was the only one capable. He had plenty of people volunteering to come over and stay with his wife for a bit, but he declined their help. Let go of the idea that you are the only one that can provide care. Maybe someone else isn’t going to do things exactly the way you do them. That’s okay. Accept help.

4. They have a sense of humor. I don’t know what makes you laugh. Funny movies. Videos of cute cats on YouTube. Conversations with friends. Comic books. The Ellen Show. Sports bloopers. South Park.  Figure out what makes you laugh and actively seek that out. And don’t feel guilty for laughing.

5. They go to the doctor. The people who are the best about getting their loved one to the doctor when needed are often the worst at seeing the doctor themselves. And if you aren’t healthy, you can’t provide care. So go to the doctor for small health issues…so you don’t end up with big ones. I talked to a guy once who had a sinus infection but wouldn’t go to the doctor because his wife was dying from cancer. His sinus infection didn’t seem important when he thought about what his wife was going through. Ironically, it was his wife who finally told him that he needed to get his butt to the doctor to get some antibiotics–because he was getting increasingly irritable (or “pissy” as she said) since he didn’t feel well. You do the people around you a favor when you take care of your health.

6. They don’t feel guilty. As a caregiver, you mess up. Maybe you thought your wife only needed one pain pill, but in retrospect you should have given her two. Perhaps you tried to make dinner and it was a flop. Or you messed up the time of your grandma’s appointment and she was 30 minutes late. You gotta move on. Consider it a learning experience. Caregiving involves a set of practical skills, and we get better at those skills over time. When you make a mistake, don’t beat yourself up. Learn from it and move on. You have a limited amount of energy. Guilt is a complete waste of energy.

7. They understand that the goal is to have a good day. They understand that their loved one will not “get better.” They are realistic in understanding that decline is inevitable in the case of Alzheimer’s, Frontotemporal dementia, or a terminal cancer. Yet they get that tomorrow can be a better day, even when their loved one isn’t improving.

8. They forget about people who aren’t supportive. They don’t continue to count on people who don’t come through. It doesn’t matter if those people are family or friends. It doesn’t matter if they have known they for decades. They stop letting those people disappoint them. They find new people to support them. Sane caregivers make a conscious effort to surround themselves with people who don’t screw them over time and time again. And when people do screw them over, they don’t spend a lot of time calling them out on it. They don’t have the time to waste on that type of thing. In short, they don’t do drama. 

And a few final notes. If you are a caregiver, listen to me here. It is okay to eat frozen pizza a couple nights a week. It is fine if sometimes you don’t return a phone call. Your neighbors will just have to deal with it if you don’t cut your lawn for ten days. Don’t be too hard on yourself if your flowers die because you forget to water them. (Tip: Buy hanging baskets of flowers. If they die, throw them away and buy new ones. It’s what I do.)

I once overheard two women who were caring for their husbands with Alzheimer’s having a conversation about the demands of their everyday lives.

“You know what we need to do?” one said to the other. “We need to stop feeling bad about all this stupid shit.”

Exactly. 

A Bad Day in Dementialand (aka Why I Am Not a Saint)

Any frustration I feel working with people who have dementia does not compare to the frustration of having dementia. Sometimes I have anxiety when I work with people who have dementia…because I worry I’m not handling a situation right or that I’m making things worse. But that anxiety is nothing compared to the anxiety some of my friends with dementia feel.

If I meet someone for the first time and they ask what I do for a living, I say that I’m a college professor. If the conversation goes a little further, I tell them that part of my role is also doing community outreach on Alzheimer’s and related dementias.

A typical response is, “Being around people with dementia must be so difficult.” Sometimes people say, “That must be really hard for you.”

They say it as if they think I’m some sort of Mother Theresa. Trust me…They’ve definitely no reason to perceive me as a saint. When I get frustrated, I curse like a sailor, and there are times I’m not even all that nice (in my defense, that’s typically when I’m hangry). I also once punched a guy at a waterpark while we were both treading water–although that was because the guy was stealing inner tubes from small children. But, in summary, I’m in no way an angel.

I’ve struggled to verbalize how I feel when someone says it must be hard working with people who have dementia or when someone says I’m great for working with “those people.” Finally I’ve finally come up with a response.

I say something like, “Working with people who have dementia is not nearly as hard as having dementia.”

I went to a memory care community a while back to visit some people who have Alzheimer’s. I was looking forward to seeing a particular woman–that I’ll call Donna–that I had a great chat with when I had visited the previous month. (For the purposes of my work, a “great” chat may not make a bit of sense but generally includes a lot of smiling and laughing.)

However, when I got there, Donna seemed like a completely different person. I’m not talking about her level of confusion. (I don’t judge how well someone is doing by their level of confusion. In fact, sometimes “pleasantly confused” is a great goal).

In sum, her whole demeanor was different. No smiling. No laughing. I couldn’t connect with her. She wouldn’t even make eye contact with me.

Donna was anxious. Almost panicky. Terrified of something. But she couldn’t express what. And I just couldn’t get “in.”

She was teary-eyed and it was almost like she couldn’t catch her breath. Perhaps she was having a panic attack. I wondered if she was in pain but I was told the nurses had found no reason she’d be hurting.

I had no idea how to help her. I sat with her for a while. She was sitting in a recliner by her bed, and I sat on the edge of her bed. I think she knew I was there, but I don’t know.

I went to talk to the lifestyle coordinator at the facility, who happened to be one of my former students. I asked her about the situation and she got visibly emotional. She said this had been going on for a few weeks and she didn’t know what to do either. They had been using sedatives but they seemed to cause hallucinations and other side effects for Donna.

We decided to try some music. I have seen music have amazing effects for people with dementia. In many cases, it can be more effective than a sedative in reducing anxiety. We turned on some Sam Cooke. If anything, it made her more agitated. We tried Johnny Cash and Frank Sinatra. Even worse. At one point (during “I Walk the Line” if I remember correctly), she lifted her arm like she was trying to slap the lifestyle coordinator. It was her only acknowledgment that we were with her.

When I was in Donna’s room with the lifestyle coordinator, Donna’s daughter and teenage granddaughters came to visit. They lived across the state and hadn’t seen her for a while. The sight of her made them break down. One of Donna’s granddaughters went down to the lounge and didn’t come back.

I remember taking a glance at my cell phone and realizing that I had stayed much longer than I had planned to. I had a meeting on campus, and I had to hustle to get there.

I remember getting into my car and taking a moment to just breath–even if meant I’d be a little late to my meeting. I’ve been with people with dementia in their final hours and as they’ve passed away, but those few hours with Donna were much, much tougher for me.

On a personal note, I related to Donna because I’ve had issues with anxiety and depression. Although I at times felt alone on my journey, looking back I really have never been alone. I could reach out for support. I could connect with people who cared about me, and people have always been there when I needed them.

Donna, on the other hand, was alone. We were with her, but she was alone. She couldn’t let us in to support her. She couldn’t let us in to be there for her. I had this strong feeling that Donna needed us, and I knew we wanted to be with her, but Alzheimer’s wouldn’t let us.

That was the hardest day I’ve had working with someone with dementia. As I drove back to campus, I felt a little bit sorry for myself. My mind was on Donna (and my failure in being there for her) but I had to pull it together for a meeting on something that seemed pretty inconsequential. I was tempted to say I was sick and skip the meeting. I was exhausted. And I felt like a loser, to be honest. I have a ridiculous amount of tools in my repertoire to connect with people who have dementia. Every single one of them had been an epic fail on this day. It was a bad day for me.

Then I realized it wasn’t a bad day for me….because it wasn’t about me. It was breaking my heart that all of my strategies had failed with Donna, but thinking this way made it about me–not about Donna.

Donna had a bad day.

So is it hard to work with people who have dementia? I don’t think it’s harder than working with other people. In fact, I could never work with preschoolers or juvenile delinquents. I’d lose my mind. And I had a very brief career in retail when I was in high school. That’s when I realized how horrible people can be. And don’t even get me started on when I worked at the Chinese restaurant. I lasted three weeks.

Sometimes working with people who have dementia is challenging or frustrating–but I think working with people in general can be challenging or frustrating.

Any frustration I feel working with people who have dementia does not compare to the frustration of having dementia. Sometimes I have anxiety when I work with people who have dementia…because I worry I’m not handling a situation right or that I’m making things worse. But that anxiety is nothing compared to the anxiety some of my friends with dementia feel. So is working with people who have dementia that hard? Nah. Not really.

And am I a saint? Not even close. And I don’t like it when people imply that I must be some sort of angel for working with people who dementia because that suggests that it must be such an unpleasant ordeal that only an angel would do it. That’s just not the case.

Some of the most amazing people I know happen to have dementia. Being able to enter their world has been one of the greatest gifts of my life.

Assholes in Dementialand

One of my college students, Hillary, had come with me to a particular adult day center once a month for a couple of years. Today was her last day because she was headed to grad school at Syracuse.

One of the guys, who I will call Jameswas really attached to Hillary. He would rush in, pushing his walker to make sure he got to sit by her each time we came. He once asked her if her eyelashes were natural or if they were “imposters.” Talk about charming… Although he has vascular dementia, he has never forgotten a detail about Hillary. My male college students could learn a thing or two from James.

I make sure to take a picture of them together that day. I would tape it up in my office. It is right over my computer screen, and every time I look at it I smile. I also gave one to James and one to Hillary.

James has been to visit Syracuse two times in his life. He remembers what county it is in and the main highways that run through the city. I ask him if he thinks it will be a good place for Hillary to live for the new few years. He turns to Hillary and looks her in the eye. Long pause… I feel like he is ready to dispense a life lesson, and I’m right.

“Hillary,” he says. Dramatic pause. “No matter where you go in this world, 10% of people are assholes.”

He goes on to explain that 10% of people in Syracuse are assholes, just like 10% of people in Iowa are assholes, just like 10% of people in Korea are assholes. He tells Hillary to watch out for the assholes, but there won’t be any more there than there are here.

That was about two years ago. I cannot tell you how often I think about what James said. When I am in the checkout line in the grocery store and some jerk elbows his way in front of me, I think about how he’s in the 10%. The other day I was running on the trails and some idiot on a bike refused to move over to give me a little space as he passed. He’s part of that 10%. And I’m sounding sexist here. There are plenty of women in the 10% as well, like the employee at Culver’s who stares me down after I ask for a veggie burger as if I’ve ordered her to hand over her first-born child.

Somehow admitting that 10% of the world is made of assholes makes it easier for me to acknowledge I’ve run into one and then move on with my day. I try to focus on the other 90%.

As for Hillary, she is now almost done with graduate school. She loves hearing updates about James, who still asks about her every month. So much for that generation gap thing.

Stuffed Cats and Real Cats in Dementialand

I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat.

About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other health conditions) and lived at an assisted living. She was reserved when I first started stopping by, and I had trouble connecting with her.

One day, I notice a stuffed cat sitting on her bed. She sees me looking at it and asks if I like cats. I tell her that I do. She smiles.

“Well,” she says. “You’ll love my Tiger. He is quite a cat.”

I’m not sure if she thinks Tiger was a real cat or not, so I walk over to pet him.

“Be careful,” she warns. “Tiger still has his claws.”

Yep. Linda thinks Tiger is a real cat. I shift gears and start interacting with Tiger as if he is a real cat. In other words, I step into her reality. Linda perks up some, and suddenly we have a connection. I figure out that Tiger is the key to engaging her.

Every time I stop by, I ask about Tiger right after I come in. He’s usually on her bed. Sometimes I pick him up and put him on the windowsill so he can watch the birds. A few times we find a nice sun puddle on the floor for him. One day she mentions that Tiger looks chunkier and accuses me of sneaking him tuna. I confess, and she smiles. I even buy Tiger a toy. Yes, I spend $5 on a toy for a stuffed cat. And Linda is beside herself with excitement, and I’ve forgotten that Tiger isn’t a real, living, breathing feline.

I come by one summer day while her son is visiting. When I ask Linda about Tiger, he rolls his eyes.

He tells me, “I’ve told her time and time again that Tiger has been dead for five years. He got hit by a car on the highway.” Linda looks at him, and then at me. I’m really not sure what to say.

“Actually, Tiger’s okay. He’s right here,” I say tentatively. The son takes a long look at me as I pet Tiger. I’m pretty sure he’s wondering if I’m the biggest idiot he’s ever met.

“You are petting a stuffed cat,” he says. “That’s not a live cat. It’s stuffed.” Let’s just say Linda’s son and I are not on the same page here, and I’m not about to let him break his mother’s heart.

“No, Tiger is a real. Alive and well,” I say. This is awkward. The son is not going to relent, and neither am I. I have now decided I am not going to admit to the son that the cat is stuffed. And once I pick a battle, I’m all in. He glares at me.

“Do you really not know this cat is stuffed? We bought him at Walmart,” he responds. “This is a stuffed cat.” At this point I should take this guy out in the hallway and explain why I am set on insisting Tiger is a real cat, but I don’t think of that at the time.

“Well, Linda knows that Tiger is real, so Tiger is real,” I say. At this point, I have Tiger cradled in my arms. I’m squeezing him tighter and tighter as I get more and more frustrated. If Tiger were alive, I might have suffocated him.

The son stares me down. It’s intense. Linda looks at me, and then at her son. He sighs and walks into the other room. I consider it a victory.

Candor in Dementialand (aka Notes on Whether My Hair is Scroungy like an Alley Cat)

I sometimes struggle with apathy when making decisions about the big things in life–like my hair. It used to be closer to chin length and now it’s shoulder length.

I’ve asked a few friends if they like it better shorter or longer and no one gives me a straight answer. They say things like, “Oh, it looks good both ways.” They are being nice…I get that. But sometimes I want honesty.

Fortunately, I work with people who have dementia. I was at a Memory Trunks program last week when a gentleman with vascular dementia asked me, “Is your hair longer these days?”

“Yeah,” I responded. “I don’t know if I should be growing it out or keeping it shorter.” He interrupts.

“Cut it. Cut it. Cut it,” he says. “It looks scroungy and there’s no point.” An honest opinion. He looks me right in the eye. For effect, he adds, “SCROUNGY. And pointless.”

I can tell this makes the staff uncomfortable. An employee steps in and says, “You have such pretty hair. It looks great longer or shorter.” But they don’t need to worry. I enjoy the honesty.

I later told my friend Holly that someone with dementia said my hair was scroungy. She told me that I am the least scroungy-looking person she knows. When I told another friend, Jen, she said, “Scroungy? Like an alley cat?” Yeah, maybe.

I’ve been told that I’ve put on weight (truth….). I’ve been asked why I was wearing combat boots (In fact, they were $150 boots I had saved to splurge on). It’s been suggested that I wear lipstick–because men like women who wear lipstick. I’ve been told my voice is annoying.

And I should point out that none of these comments from people with dementia were mean-spirited. They were simply honest observations.

I have to admit that in life there are times that we shouldn’t be completely honest. Sometimes honestly is hurtful. But I think a little honestly is refreshing sometimes. And sometimes I have to credit people with dementia for making sure I don’t take myself too seriously.

A few months back, I gave a presentation on dementia to a small group of professional woman in the morning. I had been in a rush and grabbed piece of toast with peanut butter to eat in the car on the way there. I gave the presentation and thought it went pretty well. Next I went to do some programming for people with dementia at an assisted living. I sat down in a chair and greeted them.

“Good morning,” I said. “My name is Elaine.”

“Elaine,” said a tiny woman sitting several feet to my left in a wheelchair. “You have peanut butter on your breast.”

I looked down, and sure enough there was a huge glob of peanut butter on my shirt. Keep in mind that I had already spoken to a group of 20 women that morning. I am positive that at least ten of those women had to have noticed the giant mass on peanut butter stuck to my shirt. No one mentioned it. I’m assuming they thought it would be awkward and didn’t want to embarrass me, but someone pointed it out within three minutes of my arrival at an assisted living.

They don’t care that I have a PhD. My credentials mean nothing to them, and that’s as it should be. To them, I’m not Dr. Eshbaugh. I’m just a woman with scroungy hair and peanut butter on her shirt. And there’s something about this that I really like.

The day after I was told I have scroungy hair, I made a hair appointment. I didn’t get it all cut off, but I did get it texturized and have some layers cut around my face. I’m hoping I look less like an alley cat.

Til Death Do Us Part in Dementialand

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

This is not the post you expect it to be. If you’re looking for a heartwarming tale, you might want to check out “Chicken Soup for the Soul: Living with Alzheimer’s and Other Forms of Dementia.” (Yes, it really does exist, and it’s not a bad book if you’re into that type of thing.) But I’m not sure you’re gonna get warm fuzzies from my post today. In fact, I have no idea how you’re going to feel after you read this post.

In my visits to a nursing home, I met a bubbly nursing home visitor in her 50’s who I will call Jean. Although I tell this story with her permission, I have changed her name. Jean’s husband, who I’ll call Gary, was also in his 50’s, but his appearance would have lead me to guess he was in his 80’s. Gary, who had younger-onset Alzheimer’s, had lived at the nursing home several years. He was in end-stage Alzheimer’s and seemed somewhat stalled there.

He spent most of his time in bed. He had to be turned every few hours to avoid pressure sores. When the staff got him up in a wheelchair, he slumped over to one side–usually unable to keep his eyes open. He fought a constant battle against pneumonia (common among people in end-stage Alzheimer’s due to compromised immunity) and was on a thickened liquid diet to avoid aspiration. He had not spoken for over a year. Jean told me he stopped recognizing her long before that.

Jean worked full-time and stopped by every evening. Sometimes she sat with him and watched Wheel of Fortune while holding his hand. Once in a while, I saw her doing crossword puzzles. She enjoyed talking to other residents and their families. She was bright, caring, and always laughing.

If you’ve spent any time in nursing homes, you know that they can be gossip mills. I found out through the nursing home gossip mill that Jean had boyfriend. Not that she was hiding it. It had just never come up when I made small talk with her.

As I got to know her a little better, she’d mention her weekend plans or what she did the previous evening, casually dropping the name of her boyfriend. I didn’t ask too many questions. I’m sure she had enough judgement in her life, and I didn’t want her to misinterpret my curiosity as disdain. Frankly, it was none of my business.

But I learned more as time went on. Gary was diagnosed with Alzheimer’s in his mid-40’s. His mom had younger-onset Alzheimer’s as well, so they weren’t shocked, and they had an idea of the path ahead. They went on a few trips right after the diagnosis. Jean knew these trips would be bittersweet, but they ended up being more bitter than sweet.

Unlike many people who tell their loved ones to never put them in a nursing home, Gary told Jean that he didn’t want her to care for him at home as the disease progressed. He made the choice to put his mother in a nursing home although she repeatedly requested that he never do so. He lived with that guilt, and he didn’t want to Jean to have to do so.

When the time came, she placed him in a nursing home. She visited every evening. A few years later she met someone. She continued to visit Gary every evening. She told me she loved Gary as much as ever, but she no longer viewed him as her husband.

She had taken off her wedding ring long ago because it was too painful to look down at her hand, see the ring, and remember that she had a husband who didn’t know who she was. But when she said she loved him as much as ever, I believed her.

I can’t say Jean’s situation is the norm when a spouse has dementia, but I also can’t say it is rare. In fact, on the very same nursing home hallway where Gary lived, there were two other wives in similar situations. I am not speaking of wives who had abandoned their husbands at a nursing home. I’m talking about wives who visited at least once a day, were active participants in their husbands’ care, and had boyfriends.

It’s common enough that the Wall Street Journal wrote a story about it several years ago:

http://www.wsj.com/articles/SB10001424052748704317704574503631569278424

Even religious authorities are split on whether this is okay or not. I’ve kicked it around quite a bit, and all I can say for sure is this:

If I had dementia, needed 24/7 care, and no longer recognized my spouse, would I be okay with my husband dating someone else? The answer (for me) is absolutely yes. And I would not want him to feel guilty about it for one second. Of course, I haven’t been diagnosed with dementia. Could my thoughts on this change if I were diagnosed tomorrow and saw dementia a real rather than hypothetical part of my future? Of course.

I know that Jean was with Gary when he passed away. Til death do us part. Or something like that.