Tag Archives: alzheimer’s

The Cubs Always Win in Dementialand

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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)

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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)

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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.

Looking for a Sign in Dementialand (Or When You Just Gotta Make the Call)

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After one of my friends excitedly told me she was pregnant, she launched into a long monologue about whether or not it was the right time to have a baby. She explained that she and her husband had been talking for years about when the right time to have a child might be. First, she was in a grad school. Then, he got a promotion and had to do a lot of traveling for work. Just when they thought the timing might be right, her mom was diagnosed with cancer.

She told me, “We came to the conclusion that maybe there is no exact right time to do it. Maybe you just have to make a decision.”

Those words stuck with me. When I think about my life, there have not been definitive signs telling me when it’s time to make a life decision or major change. If I would’ve waited for those signs, I’d still be sitting there–in the same life stage I was in many years ago. At some point, you just have to make a decision and move forward.

I remember having to make a series of career decisions in the couple of years after finishing graduate school. I went on a job interview at the university where I currently work as a faculty member. I wanted a sign that I should take the job if I was offered it.

I’m not sure what I would’ve considered a sign. Perhaps a carrier pigeon that would drop me a note telling me I should work at the university. Maybe a fortune cookie at dinner that said, “Take the freaking job, Elaine.” I would’ve settled for a well-done piece of toast with burn marks in the shape of the Northern Iowa mascot (which is an adorable Panther named TC who I’ve become quite close with over the past nine years, by the way). I got nothing. No signs. No signals. In the end, I just had to make a decision.

Maybe it’s getting engaged. Maybe it’s having a baby. Perhaps it’s going back to school or changing jobs. It could be something less monumental but potentially life-changing, like starting a fitness program or registering for your first 5k. You can always find a reason to not do it. There’s always something that makes the timing not exactly right. Sometimes you need to do it anyway. God, the Universe, or whatever power you believe in will not present you with the perfect time and circumstances to do anything. If we wait for perfect, we’ll always stand still.

In the past week, I’ve been asked the same question three times. The question is: How do you know when it’s time for your loved one to move to a nursing home?

A typical response to this question is, “You’ll know when the time is right.” I’m not sure why everyone says this, except that perhaps it’s comforting to think that God or the universe will put a billboard in your life to signal that you should consider a nursing home for someone you care about. As comforting as this might be, it doesn’t always happen.

A woman approached me at an event last week and asked if there was any “test” a doctor or psychologist could give her mom that would give her a definitive answer as to whether or not she should live in a nursing home. After talking to this woman a bit, I realized that she knew the best choice for her mom at this point was probably a nursing home. She had information that could never be assessed by a test, and she had more knowledge of her mom than any doctor or psychologist could ever have. And, yet, she wanted a checked box that signaled that it was time for mom to move to a nursing home.

I can’t check a box that indicates it’s time for nursing home care. First of all, I don’t know your mom, your dad, your grandparents, your sibling, or your partner. You are the person who has the information to make this decision. You may like the idea of a “professional” giving you a definitive answer, but it doesn’t work that way. I get really annoyed with people who answer questions with questions, but if you ask me if your loved one should live in a nursing home, I’m likely to ask what you think. Then I generally just repeat this back to you. Sometimes I rephrase it, and sometimes I don’t even go to the trouble. Later on you thank me for my brilliant advice when I never gave you any advice. You had the answer all along.

Second, decisions about nursing homes are about more than the person who needs care. People with dementia do not exist in isolation. You must consider the health, social support, and knowledge of family members and friends who provide care at home. We hate to make decisions based on finances, but money impacts the choice to consider nursing home care. You even have to consider issues like the layout of one’s home (e.g., Is it accessible?). I can ask you a series of questions about your loved one’s health in order to assess whether or not a nursing home might be the right choice, but that’s not the whole picture. Life ain’t that simple. Sorry, folks.

When I worked with individuals in hospice care, I had a few conversations about the choices they had to make throughout their illnesses in regards to stopping life-saving treatment (particularly chemo). One woman told me that she was looking for a sign that it was time to give up on chemo. If she had some sign, she could tell her family that the time had come to stop. However, that sign never came. She had to make a decision, and it was more difficult to tell her family because it was her choice. There was no real signal that the timing was right to forget chemo and call hospice. She just had to make a decision. It was her life, her choice.

It’s a little different with dementia. Obviously, as dementia progresses it becomes more unlikely that people can make their own choices about care. Family members and friends step in. Sometimes people with dementia and their loved ones are proactive enough to have discussions years before these difficult choices must be made. Often they are not.

We often anticipate that these decisions will be made based solely on the health of the person with dementia, but they are not. I know a man who cared for his wife with Alzheimer’s in their home until he fell and broke his hip while cleaning out the gutters. It was at this point that she moved to a nursing home. He felt guilty that this decision was made based on him and not her, but that’s how things often work. Another woman who had Alzheimer’s received in-home care for several hours a day for a few years. When her money ran out, she went on state aid and moved to a nursing home. Her family felt awful that they didn’t have enough money to pitch in and keep her at home. Love doesn’t pay the bills. (If it did, the world would be a different place.)

Quite often, a person with dementia lands in a nursing home as a result of a crisis. Maybe they fall and injure themselves. Perhaps they end up wandering around town, confused and scared, and their family realizes they can’t provide supervision at home anymore. Unfortunately, nursing home admissions in crisis are not ideal. They are stressful for the person with dementia, as well as for the family. Also, when we must admit someone to a nursing home on very short notice, we seldom get that person into our first choice of nursing home. I encourage families to make a decision before a crisis happens.

There is no pre-determined right time to get married, have a baby, go back to school, or change jobs. You don’t have a prescribed timeline for your life. There is not an exact right time to choose a nursing home for a loved one. Sometimes there’s just a difficult decision.

A carrier pigeon isn’t going to drop you a note, and sometimes fortune cookies just aren’t that helpful. And, as a professional in the field, I’ll certainly chat with you about it, but I can’t make the decisions for you. In the end, you just have to make the call.

And not look back.

Aggressive Behavior in Dementialand

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My cell phone rings in the morning as I’m blowdrying my hair before work. I look at the number, and I’m not sure who’s calling. I’m tempted to assume it’s a wrong number and not answer. I’m running late. I figure if it’s someone I know, they can leave a voicemail. However, something tells me to answer.

It’s a friend of a friend that I’ve met with before. I’ll call her Laura. Her and her husband, Al, are in their early 70’s. He has Alzheimer’s. He was diagnosed about five years ago. The last time I talked to Laura, Al was able to work at a part-time job and drive.

When I answer the phone, Laura tells me that she doesn’t know what to do. Al has been declining quickly. He needs help using the restroom. He forgets to eat. The other day he didn’t even know how to open a door.

But that’s not why Laura called. She called because he didn’t sleep last night. He wandered around the house, disorientated and muttering to himself. At about 3 am, she tried to get him to come to bed. It was dark and he didn’t recognize her. He pushed her down on the couch and started to put pressure on her neck, as if he were trying to choke her. Laura mentions several times that he didn’t leave any marks on her neck. I’m not sure if she’s trying to reassure me or herself.

Then he shuffled off and went out onto the deck. Laura spent the next couple of hours watching him from the window. She was worried he’d wander off and get lost, but she was also scared to try to convince him to come inside.

“I don’t know what to think,” Laura tells me. “He’s a gentle guy and we’ve always had a great marriage. He’s never been abusive.”

I explain that this has nothing to do with whether or not he’s a kind and gentle person. It has nothing to do with their marriage. It has everything to do with Alzheimer’s.

I tell her that he’s scared. The rest of the world may perceive Al as being in his own home–a familiar environment in which he has resided for decades–with his wife of almost 50 years. However, Al’s behavior tells me that he wasn’t in a familiar environment with a familiar person. He was in a scary place where he was approached by someone he didn’t recognize.

The term aggression in relation to people with dementia makes me uncomfortable. When we say someone is aggressive, we generally mean that they are unprovoked (rather than defending themselves) and intending to use force to hurt someone. However, I would argue that aggression among those with dementia is almost always a result of fear.

The way that someone with dementia perceives the world around them often results in a feeling of being threatened. What does anyone do when they are threatened? They lash out. It’s a natural reaction. When people with dementia show aggressive behaviors, these behaviors often make sense if we consider how they might be perceiving the world around them.

I ask Laura a few more questions. I learn that Al used to be a hunter, and Laura came home recently to find that he pulled out a few guns and put them on the kitchen table. He explained to her that someone had been messing around in the garage, so he had to be prepared. It scared Laura enough that she asked her son to come and get Al’s guns.

“I’m pretty sure that no one was in the garage,” she tells me. “But I guess you never know.”

On another day, he was convinced that “the militia” was after him. He had a bunch of knives out on the counter. He had also kicked the dog a few times, which was something the “old Al” would never have done. It horrified Laura.

Laura keeps telling me that she doesn’t think Al would ever hurt her. (She’s more worried about the dog, she says.) I have to think that if she really believed this she would not have called me before 7 am. She’s scared.

I tell her that she needs to get Al a medical check up. I am particularly concerned that he may have a urinary tract infection, which is often linked to aggressive behavior in those with dementia. She agrees he needs to go to the doctor, but she has no idea how to get him in the car. She doesn’t think he’ll go willingly.

Then I ask her if she’s checking into long term care options. There is a pause. The kind of pause where you wonder if the call has been dropped. Or if someone has hung up on you.

Finally, Laura tells me that she can’t do it. She can’t even think about Al living in a nursing home. He’s been a good husband and she will take care of him at home. She says he deserves that, and she promised their kids that he’d stay at home. She insists she’s doing okay. I point out that she wouldn’t have called me if she was doing okay. Dementia caregivers don’t call me to say they are doing fine.

I tell Laura that Alzheimer’s is a cruel beast, and sometimes it forces us to make choices that we don’t want to make. Most people are not really excited about the idea of someone that they love going to a nursing home or memory care community, but sometimes it’s the decision we have to make. I’m concerned that he needs a level of care that can no longer be provided in home. And I’m concerned about her well-being and safety.

I tell her that she can’t continue to live like this. She’s not sleeping. She’s not eating. She says she’s sick to her stomach all the time. She’s particularly worried about him hurting the dog. She can’t have people over to the house because it seems to agitate him. And she can no longer leave the house because she’s not comfortable leaving him alone.

“I can handle him at home,” she says. “I mean, how long can this go on?” I have no idea if this is a question she wants me to answer or a rhetorical question. I answer anyway. I tell her it could actually go on for quite some time.

I give her some advice on community resources. I tell her not to be afraid to call the police if she has concerns about her safety or Al’s safety. We talk about support groups, but she doesn’t seem interested. I suggest she start checking into nursing homes and memory care communities. Although she earlier said she couldn’t do it, she says she’ll consider it. She might be appeasing me.

Then I hang up my phone and get back to drying my hair. I head to work and get on with my day. I’m not sure if what I said to Laura was even close to helpful. Yet I’m not sure what I could have said differently.

That evening I get a call from Laura. She tells me Al is in the psych ward. She is upset because she thinks they gave him too many sedatives when he arrived. In her words, he’s a zombie. She’s also frustrated because they used restraints when she didn’t feel it was necessary. A social worker told her that there’s no way she can take Al home. They need to talk about other options.

Yet, she also tells me she’s feeling relieved that he’s out of the house, and she’s excited to get a decent night’s sleep. In the next breath, she says she’s feeling guilty for feeling relieved.

I hang up the phone as my husband is getting home from the gym. I pour a glass of Riesling. We sit on the couch together and watch some mindless TV with our dogs. We both vent about work. We talk about the weekend plans we have with friends.

My mind drifts, and I wonder if there could ever be a day when my husband sees me as a stranger. Despite my experience with dementia, I can’t fathom it. I can’t wrap my mind around that possibility. It’s not something that could happen to us. Not now, not in five decades, not ever.

I can’t stop thinking about how cruel it is that fifty beautiful years of marriage must end this way for Al and Laura. I want Laura to have peace, but I can’t tell her how to get there. I can explain dementia, but I can’t help her make sense of it. Sometimes there isn’t a silver lining, and sometimes you come up empty in a search for meaning.

The 2041 Words That Helped Me Understand Dementialand

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I’ve written this blog since January. This is my 73rd blog post, which blows my mind. I’ve received positive feedback…and I’ve gotten some negative feedback at times as well.

I’ve written a few posts that make me really proud. I’ve written some that I would say are just okay. There are a couple that I’m not sure are all that great, and I’m fine with that. All in all, I have to say that the joy for me in writing this blog has come from the connections that it has helped me make rather than the quality of the work.

I wouldn’t necessarily call myself a private person, but I’ve struggled at times to put my experiences and perspectives in writing, not knowing what type of response I might receive. I’ve written about a few regrets I have, and I regularly visit my many weaknesses and vulnerabilities. Sometimes I open up a bit and wonder if I shouldn’t have. In the end, I’m usually glad I did.

All of that pales in comparison to some of the blogs I read that are written by people with dementia. I am particularly impressed with the raw honesty of a blog by a woman in her 40’s with younger-onset Alzheimer’s disease named Melanie. It’s insightful, courageous, and amazingly real. Her work is far more more compelling than anything I’ve ever written or will ever write.

There is one particular post that I have read about 15 times. It has helped me understand dementia in a way that I did not understand it before. It also continues to break my heart.

A link to the post is included, and I have pasted the entire post below.

Thank you, Melanie. You are making a difference.

https://mwagner21.wordpress.com/2015/07/15/remember-me/

.. Remember Me .. 

JULY 15, 2015 

I knew it was coming, but the knowing didn’t make it any easier.  New doctors 😦

After a horrible ordeal at my recent new neurologist’s appointment, I didn’t talk for quite awhile to my husband or daughter who took me to the appointment. I truly was just tired of it all.. the questions, tests, blood work, etc. On top of that, this highly recommended and well qualified neurologist was completely rude, interrupted each of us as we tried explaining me .. yep, feels like just yesterday, or should say 6 years of frustration with doctors with their questions, disbelief, egos bigger than the room their in, and then the overwhelming ending statement “well, there’s not anything more we can do” ..

yes I know I’m dying.. yes I know there’s no cure, no medicines for the disease, only endless pills for the symptoms and then more pills to counter those pills’ side effects … an unending cycle I want out of so bad. But can’t a doctor just give me a little bit of hope.

Finally after a bit, we took my daughter to dinner for her birthday and I was able to process everything and speak a little of how I felt. I looked at my husband and said “I just don’t want to talk to anyone anymore” .. I asked if he understood what I meant by that and he said “yes”. I thank God everyday for my husband and his “knowing” and comfort and peace he gives me. I don’t want to talk about what’s wrong with me over and over with more and more doctors or about all my medications and prognosis. I just want to be left alone.

So the medications I’ve been on since diagnosed, that again, do not do anything for the disease itself, only the symptoms of the disease… are no longer working. They were hoping they would at least help me focus a bit more, which it did for a few years, then they hoped the other med would slow down my progression.. after being tested 3x a year to follow my progression, the med has not helped .. not even a little.

In this disease, you either plateau – stay even for a bit or even longer or you just decline rapidly – all at once, or in the beginning and then later .. I’m back to that steady decline. My earlier hospitalization this year, really hurt me mentally. People think going into the hospital is a short ordeal, and then you go back home and you heal and get better. With this disease, it doesn’t always work that way for us. Sometimes we never recover from the mental and physical breakdowns. In my case, as I have fought back hard all these years from over a 100 admissions, this last one, I haven’t been able to get my footing back, my fight.

I have literally gone back to where I was the year I was diagnosed in every aspect. I look back now at the past few years and yes, I do appreciate the health, the strength and drive I was blessed to have, but now I’m truly scared. In the beginning after you battle the depression, anxiety, fear, hopelessness… you eventually come to terms with it and move on – fight back as much and as often as you can. The promise of meds to help, good doctors, progress – oh progress – I wish for that, but it’s not to be anymore.

My tests have shown a sudden fall in everything, too fast for me to even grab a hold of one aspect of it to try and stop it, or push through to make it at least bearable. My anger is back, frustration is growing, my words (though you may seem they are good as I write this) are not there when I go to talk or to express what I need or even when I need help. Their random, they don’t make sense most of the time and most conversations are filled with so much bitterness and anger.. I’m losing control and can’t seem to stop this spiraling. This isn’t me. I just want to be “me” again!! I truly hate this disease and what it does to all of us with it. I hate what it does to our caregivers, their pain, frustration and helplessness. The tears – never ending.

I want to apologize to anyone who reads this, if I’ve ever commented or posted anything to offend anyone or anger some. I truly don’t mean to. As I try and write what I feel, or truly try and comfort or encourage others – my words are just not coming out right anymore. From this point on, I may continue my blog, but I may have to face the fact of just shutting out my other social media outlets. My brain just can’t seem to grasp all the “clutter”, chaos, information… you may think those words are harsh, but to someone with this disease, that’s what it feels like to us. Too much stimulation, too much to try and comprehend and then try and process. What used to be so easy, is now so hard to just grasp other people’s words, appreciate their beautiful photos – because you’re trying to remember who they even are, to read a wonderful quote or prayer and not be able to process the meaning anymore.. this world sucks. I wish I had a different word for it, but I can’t think of any right now and may never again.

My reading and writing have also both deteriorated so bad. I thank God for my continued use of a keyboard, for “auto correct”, though it can’t correct any feelings that just aren’t coming across exactly the way I want them to. I wish there was an easier way to express how all this feels. To be able to help someone out there to understand, to be able to encourage others with this disease with problem solving ideas like I used to be able to do, or just give information to help ease some of the anxiety that caregivers feel. I’m lost. I’ve come so far to only recede back to where I was years ago.

This is what dementia looks like. We may all have different forms of it, classifications, stages and progression, but the symptoms are all the same, they just happen at different times and degrees.

Well, it’s after 4am and I have yet to sleep tonight. None of my meds help with my sleep anymore. Insomnia is now more common than a night of sleep. I have a fellow friend with the disease who also shares this same nightmare, of sleepless nights, unable to “shut off our brains”, though their not working quite the same, their still running “non-stop”.

As far as my new doctors, I understand their evaluations of me. I’m thankful that their no longer going to put me through rigorous testing anymore and constant hospital admission. I still have to do my progression testing every three months, but those have a new meaning to me: embarrassing. Questions I cannot remember the answers to; the year, the president or even things he wants me to remember and repeat later on, or the “where am I” or where do I live… frustrated, anger, embarrassed, helpless.

Those feelings are why I haven’t written in awhile. I don’t know what to say or how to say how I feel other than those words.

My husband and I have now settled where it’s warmer year-round for me, to help me, as I can’t take the cold anymore. We’ve prepared for the worse that is approaching much quicker than any of us would like. Last year, they gave me a projected date “maybe 2 years Mrs. Wagner” .. that’s what I remember them saying. I always brushed it off, as they truly don’t know, it could be 10 years. I can fight this, overcome it, keep praying, believing in a miracle.. I never gave in to a “final date”.. just kept on going.

The past month has changed all that. At first I noticed it, then my husband did. Little things just like 6 years ago, now much bigger things are happening. I’m blessed my husband can be with me every single day and night, so I’m not alone, and he’s there to help, to make sure nothing happens to me and I’m safe. But it’s getting harder as I reach for something and I drop it every time now; I open the refrigerator door and forget to close it; I start my morning routine (because I have to have a routine now due to this disease, anything out of sync will absolutely sink me, and that’s no exaggeration) and then I’ll miss a step – leave the water running in the sink, try and start a cup of coffee (and we have an easy Keurig for me to use) but forget how to even push the button or close the lid and I just stop and stare at it, hoping something would “click” and I can figure it out, but it doesn’t, so I just sit on the couch as usual and hope I can just process how to lay down, pull up a blanket or even answer my phone, which is becoming more and more difficult. Then the randomness pops up here and there: I can use my laptop once it’s been opened for me, “surf” through my emails, but can’t really understand most of what I read, so I leave them for my husband. Again, so thankful for him and all that he does for me, for us, our home, our family.

I’m not sure when I’ll be able to write again as these moments are fleeting now, of comprehension, awareness and focus.

It will be sad to leave my family and friends on facebook, etc, but I’ve gotten to that point in this disease where I don’t feel like I’m a benefit to anyone anymore, nor any good “news” on my end. I wish everyone much love and prayers and all of you will always be in my heart and mind, even if I’m losing touch with faces or names, I remember feelings, warmth, love and encouragement. I know I am supported more than I deserve and I am so grateful to each of you. Someone will keep anyone posted that would like to know or if ever close by, to visit, though I’ll apologize now if I’m not “quite there” anymore. My 45 years have been filled with all of you – great and true friends, warm and loving family – God has surely blessed me and I thank Him everyday for each gift He has given me. Till He is ready for me to come home, I’ll never give up, I just have to fight a little differently now.

The following song sums it up in a bittersweet way ❤

“Remember Me” lyrics below by Chris Mann – who wrote this song as an anthem for Alzheimer’s:

“I need someone to hold, to hold on for me ~ To what i can’t seem to hold  on to ~ The life we used to live, is slipping through my fingertips ~ Like a thread that’s unraveling ~ I suppose that nothing lasts forever, and everything is lost in its time. ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ Remember me ~ I know there’ll come a day, when i have gone away ~ And the memory of me will fade ~ But darling think of me, and who I use to be ~ And I’ll be right there with you again ~ I hope I’m one thing worth not forgetting ~ Tell me that you’ll never let me go ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ 

Remember me…

The Prime Time in Dementialand (and Why You Don’t Want to Listen to Me Lecture at 2pm)

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When I was a teenager, my mom bought me a nightshirt that said “Perky Morning People Should be Shot” across the front. Looking back, that statement was a bit harsh, but I often threw a fit (aimed at my mother) about having to get up early in the morning. And I wore that nightshirt until I was about 25…until it was virtually transparent.

Despite my allegiance to that nightshirt, I can’t say I’m not a morning person. I don’t enjoy having to get up at 5 am, but I’m most productive in the mid-morning (from 8 to 11ish). If I have important work to do, I try to structure my day to get it done in that time frame. When possible, this is when I teach my college courses. I also attempt to schedule important meetings around this time. (And, in case you were wondering, my blog posts are on scheduled released. I’ve talked to a few people recently who were impressed that I was up at the crack of dawn doing my blog. Nope. I’ve usually fast asleep when my blog posts are released.)

I’m also can’t say I’m not a night person. I’m definitely not an owl who stays up ridiculously late, but in many ways I feel my best at night. I do my best writing in the later evening (from 9 to 11ish). I feel most creative in this time frame. I’m usually happiest at night as well. If you want something from me and want to make sure I’m in a good mood when you ask, try 9 pm.

What I am not is an afternoon person. For as long as I can remember, I’ve disliked afternoons. My complaints about the evils of afternoons are many…For instance, I struggle to concentrate and lack motivation. I don’t have much patience in the afternoon. I am much more likely to be annoyed by something inconsequential in the afternoon than at any other time. I also have more anxiety in the afternoon than in the morning or evening–although I’ve never figured out why.

I’ve tried various strategies to change this, including going to bed earlier and changing what and when I eat. To be honest, I’ve tried consuming large and potentially hazardous amounts of caffeine. (In fact, I’ve tried everything short of illegal drugs to increase my energy in the afternoon.) Those things do make a small difference, but I’ve come to the conclusion that I’m just never going to be at my best in the afternoon. Trust me…you don’t want to have to listen to me lecture at 2 pm. I’ll get through it if I have to, but I’m not as “on” as I am at 9 am.

A couple of years ago I was making plans to work with a colleague on a project that involved a lot of tedious data and a few statistical methods that we had both learned in grad school but rarely used. I asked what time we should get together.

“Let’s do late morning,” she said, “That’s my prime time.” I wasn’t sure what she meant by prime time, so I asked. She explained to me that her prime time was the time of day when she felt sharpest, and she tried to schedule her most taxing tasks in her prime time. I’m not sure why, but it had never occurred to me until this moment that I could (and should) try to schedule my day around my “best” times when I could. (I’m fortunate to have a job with some flexibility that allows me to do this, and I know not everyone is as lucky.)

If you think about your day, there are probably a couple of “pockets” of time when you feel best. Maybe you’re happiest and most productive in the early morning. Maybe you don’t really wake up until noon. Perhaps you’re the type of person who thrives late at night after most of the world has gone to bed.

A few websites suggest that you can start a spreadsheet to track your energy and mood throughout the day in order to figure out when you’re at your best. However, I would argue that if you have to collect data to figure this out you probably don’t need to worry about it much. Without a chart, I can tell you that I’m pretty lackluster in the afternoon.

No one is at their best all the time.

That includes people with dementia. Individuals who have dementia may see the patterns they have experienced their whole lives exemplified. Or the patterns may change. Either way, the patterns become more important. And structuring one’s day around these patterns, and a person’s “prime time” becomes more key to quality of life.

Recently I talked to a woman, Heidi, whose husband has Alzheimer’s. She told me that they took a trip to Hawaii, which had always been a special place for them as a couple. I asked how it had gone.

“Not good,” she said. “Not good at all.”

Heidi told me that her first mistake was booking a flight that left at 6 am. Her husband had never been a morning person, and he struggled even more with mornings after his diagnosis. Getting out of bed before the sun came up seemed to increase his confusion. He kept forgetting where they were going and didn’t believe Heidi when she repeatedly told him about the trip. He even asked a flight attendant where the plane was going and doubted her answer. The combination of traveling and being up early made for an awful experience–for them both.

Heidi’s husband also struggled with the tours and planned events on their vacation. He was used to “downtime” at certain points during the day. One day they were on a bus tour (at a time when he would typically be sitting on the couch watching TV) when he become confused and panicked. They had to get off the bus and call a cab to get back to the hotel.

Heidi realized that maybe the trip itself had just been too much for him, but she also realized that she could have been more sensitive to his prime time when she planned. She assumed he’d be able to adjust. He would have been able to adjust a few years back, but she had to admit that his prime time had become important to the success of their activities.

And what about those with dementia who must adjust to life at a nursing home?

You won’t hear me knocking nursing homes as a whole. I know that there are great nursing homes, and there are not-so-great nursing homes–to put it nicely. Some of the kindest people I’ve ever met work in nursing homes. But there are a lot of downfalls to institutional living…

Although we are trending (too slowly) toward more individualized care, life at most nursing homes is quite scheduled. Meals are offered at certain times. You are expected to get up and go to bed at certain times. Activities are on the calendar. These events are often not dictated by an individual’s preferences but by the convenience of the facility. And this is not a criticism of facilities…they are usually understaffed and attempt to plan in the most efficient way for all. Unfortunately, it’s sometimes about the greater good rather than the well-being of one individual.

However, attempting to adjust to this schedule can be hard for people with dementia. In fact, it would be difficult for anyone. I know plenty of people of all ages who enjoy sleeping in…but how does that work with the schedule at a nursing home? And what about night owls? How can you stay up and watch TV when your roommate goes to bed at 7 pm? As a professed afternoon-hater, I worry that all the best activities might happen in the afternoon when I would prefer them in the morning. Individuals with dementia may struggle to make these adjustments–even more than the rest of us.

To function in the “normal” world, we are forced to play by the rules. I sometimes have important meetings at 2 pm. When I have to do reports at work, I may only have an afternoon time slot to get them done. That’s the way life is, and I adjust. After all, I’d like to keep my job.

However, adjustments may be more difficult for those with dementia. Someone who struggles with having a conversation may do well when they have visitors during their prime time but find conversation more taxing at a different time of day. If Grandma wants to go grocery shopping but sometimes finds it overwhelming, it may be useful to make sure she goes during her prime time. And if Mom typically takes a nap in the afternoon, it might not be best to plan the family Christmas celebration at 3 pm.

It sounds simple, and it is–really. If you are a professional or family caregiver, help people with dementia create schedules that work with (not against) their prime time. Be conscious of times when people may not be at their best. Consider the individual’s priorities and assist them in managing their time in a way that uses their best moments to maximize those priorities.

And do the same for yourself.

The Miracle and/or Science of Music in Dementialand

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After returning from a vacation that involved my husband and me driving halfway across the country (literally–from Iowa to South Carolina) and back again, I am more amazed than ever at the miracle of GPS (aka Global Positioning System). I know GPS is nothing new, but as it becomes more advanced–for instance, telling us when we will encounter traffic–I realize I am increasingly dependent on it. And it blows my mind.

Several people, including one who is in our university’s Geography department, have explained to me exactly how GPS works and why it has become more accurate in recent years. Their explanations have been quite user-friendly, but I still cannot wrap my brain around GPS. Since I can’t make myself truly understand the science behind GPS, I just call it a miracle and live in awe. For the record, I am the same way about 3-D printing. I recently read that someone was able to use a 3-D printer to produce a violin. Call it science. Call it a miracle. Either way, it’s pretty awesome.

There’s something in Dementialand that can be called a miracle–or explained by science. Take your pick. But, no matter your explanation, it’s amazing. And, compared to medications and other therapies, it’s dirt cheap and has zero side effects.

It’s music.

I was reminded of this when I was on vacation in South Carolina. A wonderful family friend was telling me about her mom, who is in her 80’s and has Alzheimer’s. She said that the only thing that brings her mom comfort…is music. She may not remember the names of her family members or recall going on vacations. She isn’t able to talk about her time with her husband, who has passed away, or reminisce about when her children were young. And, yet, she remembers the words to songs…and that seems to bring her some sense of peace.

It’s certainly not the first time I’ve heard this. In fact, I was volunteering for a hospice years ago when the daughter of a woman with Frontotemporal Dementia told me she wanted to show me a miracle. I wasn’t sure what to expect as I walked into her mom’s bedroom. There was her mom, curled up in a ball, in bed. She hadn’t been able to speak in months, and her current state prompted her kids to continually ask, “Mom, are you in there?”

There was an old-school cassette tape player in the room. Her daughter put in a tape that they had recorded of their church congregation singing hymns. As soon as the tape started, her mom’s lips started moving to the words. If sounds came out, they were only whispers, but the family took this as proof that, as they put it, she was still “in there.”

“See? Have you ever seen a miracle like this before?” the daughter asked me over the music. “It’s a miracle from the heavens.”

I didn’t say it wasn’t a miracle. However, I did give her a brief scientific explanation of why this happens. (And, it does happen frequently among people with dementia.) I explained that language is stored in a different area of the brain than rhythm. In many dementias, language may be lost to the disease while rhythm is protected. Words that are associated with rhythm (e.g., song lyrics, prayers) remain although other verbal skills are gone.

Someone who can’t talk can sing. I’ve witnessed a person with end-stage Alzheimer’s singing New York, New York when he had not talked in months. He sounded just like Frank Sinatra. Someone who can’t walk can dance. I’ve seen CNAs “dance” someone from the bed to the toilet when they are unsteady on their feet. The best CNAs understand how rhythm can help with movement for people with dementia, and they use that to their advantage. And it’s all because of the way dementia impacts the brain.

As I explained this to the woman whose mother had Frontotemporal Dementia, she gave me a blank look. After I was done talking, she stared at me for a few seconds.

Finally, she said glumly, “So I guess it’s not a miracle after all.”

I had just explained away a moment of joy. Without meaning to, I had stolen her miracle. It occurred to me later that what I perceived as science was perceived as a miracle by her and her family. However, I was as amazed at the science as they were at the miracle. I certainly was not intending to imply that what we were seeing was any less amazing because it could be explained scientifically.

Although I was raised Catholic, I’ve struggled to figure out where I belong in terms of religion, faith, and spirituality. I know I’m not unique in this, and perhaps the term “struggled” isn’t really accurate. I just figure it’s part of the journey. It’s never really bothered me that my views about religion and life are evolving. We are all dynamic in terms of our perspectives on life, whether we are religious or not.

I’m the daughter of chemical engineer. Although chemistry isn’t my thing, I did inherit a nerdy love of the scientific method. Science–and how we can apply it to human life–fascinates me. For example, I wasn’t too committed to learning the parts of the brain when I was an undergraduate. However, as I started spending time with people who had dementia, I realized that I could translate certain behaviors to deficits in certain parts of the brain. For me, science was suddenly about people, not about cells on a slide.

I don’t like to think of miracles and science as competing theories. Something can be rooted in science but also be appreciated as a miracle. When we were in South Carolina, we walked down to the beach after dinner to see the most wondrous double rainbow over the ocean. Although I somewhat understand the science of rainbows, I did ask my good friend Siri (aka–my IPhone), “Siri, what makes a double rainbow?” Siri was able to kindly send me to a couple of websites where I learned a bit about “secondary” rainbows and why there is sometimes a larger, fainter rainbow over the primary rainbow. There is a scientific explanation of a double rainbow over the ocean. Yet, does that mean it’s not a miracle? Does that mean we should look at it with any less awe and wonder?

I can explain why music is such a valuable tool for people with dementia by showing you a picture of the brain. I can tell you why people with Alzheimer’s can sing but not talk by discussing the functions of various parts of the brain. However, I am not going to argue if you say it’s a miracle that a woman who is non-verbal is singing a hymn.

Music can have a pretty incredible impact on all of us–not just those who have dementia. A few months ago, I was in my office when Free Bird by Lynyrd Skynyrd came on my Pandora station. In high school, I spent quite a bit of time riding around town with my friends Dan and Tom in a turquiose pickup truck owned by Dan (or maybe by Dan’s parents). I am almost sure we had some interesting conversations, but I cannot be absolutely certain because I don’t remember a single one of them. I have no idea what we talked about, really. What I do remember are the songs we listened to. Or maybe I should say the song. I think we just listened to Free Bird repeatedly. Maybe once in a while we listened to Tuesday’s Gone with the Wind as well. There’s something about riding around in a pickup while listening to Lynyrd Skynyrd.

I have also found that music connects people. My favorite song to lip sync to as a kid was Islands in the Stream by Kenny Rogers and Dolly Parton. I sang the Dolly part, obviously. Sometimes I sang the Kenny part as well, but sometimes I pretended like my current crush was singing the Kenny part. (Once in a while it was a celebrity crush like Kirk Cameron, but usually it was someone in my class at school.) There’s also a remake of Islands of the Stream by Reba McEntire and Barry Manilow. I don’t know what they were thinking. It doesn’t touch the original.

By coincidence, I recently discovered that my friend Dana has the same slight obsession with this song. When we figured this out, we instantly became kin. Music can bring people closer together. And it doesn’t hurt that we also both have puggles (a beagle/pug mix) and love wine. Lifelong friendships have been built on less.

I put the power of music (especially for those with dementia) in the same category as GPS and 3D printing. It doesn’t matter if you consider it science, a miracle, or both. It’s pretty awesome, and we need to use it to our advantage.

And if you have even a passing interest in music or dementia, do yourself a favor and watch the documentary “Alive Inside.” It’s available on Netflix.

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

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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.

Conferencing in Dementialand (or What You Learn by Observing Minglers)

alzheimer's, caregiver, dementia, research, ,

I’ve spent the last few days at the Alzheimer’s Association International Conference in Washington, DC. You may have seen some news articles discussing the research that was presented at the conference. Although the conference had some research on psychosocial therapies and technologies to help people with dementia, it’s not surprising that perhaps that biggest headline to come out of the conference pertains to a drug that could possibly slow the progress of Alzheimer’s in the early stages of the disease—if it pans out. And I’m cautiously optimistic that it will have a significant benefit for some individuals with the disease. If you think I’m tempering my enthusiasm, you’re right. I often do this in response to the media overstating the effectiveness of a potential treatment that may be years away from being available anyway.

Sometimes I hear individuals with Alzheimer’s and care partners make comments about how slow progress is in the area of Alzheimer’s research. And I can’t blame them. We’ve been slow to go to battle against dementia in general. Funding has been limited. We’ve traditionally viewed Alzheimer’s as an “old person’s disease” and we’ve thought of better ways to spend our money than on our aging population. Furthermore, protocols to ensure the safety of any drugs and therapies are stringent to make sure treatments are safe for humans before they are used. And, sure, this means longer time periods before we can try therapies with individuals who could benefit from them.

A man with Alzheimer’s told me recently that he’s given up hoping that there will be an effective way to slow or stop the disease in time to help him. Now he just hopes that there will be something to help his children. I wanted to tell him that I thought something would be available in time to make a significant difference in the course of his disease, but I couldn’t. With reasonable confidence, I did tell him that I thought we would have more treatment options for his children if they were to be diagnosed.

Here’s why I could look him in the eye and tell him that…

My dementia-related research publications are in the area of professional and family caregiver knowledge, education, and intervention. In sum, it’s psychosocial. When I talk about my own research, I’m not talking about drug trials, PET scans, and biomarkers. I’m not talking about genes or neurodegeneration.

However, this week I was in a world where neuroscience nuances were hot topics of conversation. I’ve been told I have a very distinct “concentration face,” and I’ve been told that face looks a bit angry—even though it isn’t intended to be. I have a feeling I was wearing my “concentration face” while trying to process this stuff.

It was good for me. I need to be up-to-date so I can convey scientific knowledge to individuals and families. I teach this stuff in my college courses. And it helps me to understand why people with Alzheimer’s think, feel, and behave in the way that they do. It also reminds me not to be complacent because I have a lot to learn. However, the biggest reason it’s good for me is because it makes me more optimistic.

At this point, research is at an exciting place, but it still moves slower than we all wish it did. What makes me optimistic is not just the research…it’s the researchers. I read a lot of research articles about Alzheimer’s…but seeing a group of researchers proudly present the state of their project to a crowd of fellow scientists, professors, practitioners, and press? It reminds me that this is about people.

It’s about people with dementia, of course. It’s about their families and care partners. Then we’ve got professionals, like individuals who work for the Alzheimer’s Association and work tirelessly for advocacy and fundraising. Others work in nursing homes or memory care communities and see individuals who struggle with Alzheimer’s on a daily basis. What I want all of you to know, despite what you might think about the level of funding of Alzheimer’s research compared to research for some other diseases, is that the researchers are in this, too.

I met researchers at the conference who work 80 hours a week. They sacrifice time with their families (maybe to a fault) and forego vacations. They are committed and passionate. Some of them actually have little direct contact with those with dementia. They spend their time in a lab, maybe doing statistics or looking at brain scans. You might think about their daily routine and think they are detached from the actual day-to-day life of those affected by Alzheimer’s. If you have Alzheimer’s, it’s true that they might never really know what you’re going through. Maybe they will never know the challenges of a family care partner. But I want you to know that they are in this as well. And they do care. It’s more than a job. It’s their purpose.

At the conference, there was an area in the lobby with a huge sign that said “Mix and Mingle.” If the thought of that sign makes you cringe because you’re slightly socially awkward, we might be kindred spirits. (When I was a kid, my parents told me not to talk to strangers. I still typically follow their advice.) I spent just a bit of time in the mingling area—much of it on my laptop feeling like a kid standing in the corner at a middle school dance. My thoughts alternated between “Somebody PLEASE talk to me,” and “I hope nobody tries to talk to me.”

But I did eavesdrop on mingling. I’m much better at observing and analyzing human interaction than participating in it. There were some conversations about when it was best to take an Uber versus a cab (quite useful for someone who lives in Cedar Falls, Iowa) and how the heat index was well over 100 degrees. This is also how I learned about the National Crime and Punishment Museum, which happened to be right down the street and was the best $21.95 I’ve spent in a while. However, much of the conversation I (over)heard was about…Alzheimer’s.

The researchers could have gone to sit at their hotel pools or see DC attractions during conference breaks, but they didn’t. They hung out and talked about…Alzheimer’s.

Sure, you can make some pretty negative accusations about huge money-hungry pharmaceutical companies. I am not naïve to how they drive research in the field. But this is about people. And this week I got to meet some pretty motivated, bright, and optimistic people. It’s those people that will eventually crack Alzheimer’s.

Earlier this summer I was talking to a women with whose husband had passed away from Alzheimer’s. When she asked if I was going on any trips this summer, I told her that I’d be attending this conference.

She said, “You tell those nerdy scientists that they don’t know everything about Alzheimer’s until they see their spouse waste away from it.”

She’s absolutely right. They don’t know everything about Alzheimer’s. They may not know what it’s like to have the disease or what it’s like to be a care partner. But that’s not going to stop them from working 80 hours a week to find effective treatments and an eventual cure.