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.

Friends Who Make Like Trees in Dementialand

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In one of my college courses, I often found myself sitting directly behind an African-American woman who wore her hair in cornrows. I was fascinated by her cornrows and found them gorgeous. As a white girl who couldn’t even braid, I was amazed at how tiny and detailed the braids were, and one day I decided to tell her that.

I started with something like this: “I hope this doesn’t seem weird, but I have been sitting behind you for this whole semester and I just have to tell you how much I like your hair.”

She thanked me, and we talked about how long it took to do the braids. I’m not sure I’d say we were friends after this conversation, but we were at least “friendly.”

I didn’t think too much of our interaction until a few months later when I attended a panel discussion on campus. The panel discussion was on ethnic diversity. I remember sitting in the front row and looking at a long table of experts on ethnicity, discrimination, and social relationships.

The people on the panel talked extensively about things you should not say to individuals who are ethnic minorities. In the midst of this discussion, an African-American woman said that you should never ever–under any circumstances–say anything about a black woman’s hair (which, of course, I had recently done).

I also remember someone saying that you should never ask a question based on a racial stereotype. They gave two examples, which I clearly remember. First, you should not ask an Asian person if they play the piano. Second, you should not ask an African-American man if he plays sports. In addition to breaking the “rule” about talking about a black woman’s hair, I had also recently asked if an African-American man if he played basketball. To be fair, he was a college student who was about 6 foot 8 and was wearing basketball shorts around campus–but I had broken that “rule” as well. (And, yes, he was a college basketball player.)

I am sure that there were many useful points made at the panel discussion on diversity, but my 19-year-old brain wasn’t able to process all of them. Instead, I was stuck on how some things I had said could have been perceived as offensive. And it bothered me. A lot. I even asked my roommate, Erin, if she thought I was racist. (If I never thanked you at the time, Erin, I’d like to thank you now–more than a decade and a half later–for assuring me I was not a racist.)

I left the panel discussion afraid to talk to people who were different from me. I worried that I would say the wrong thing, even if I was well-meaning. Obviously, that wasn’t the purpose of the panel discussion, but it was the impact it had on me at that point in time. I thought maybe it was better to not interact with someone than to say the wrong thing to them.

In a way, I had felt like that before in a very different situation. I had a friend in middle school whose mother passed away from cancer. I didn’t know what to say to her, so I avoided her. I didn’t go to her mom’s funeral. I saw her in the hallways at school and walked the other way. I saw her as different than me…I had a mom and now she didn’t. I had no idea how to relate to her. I didn’t want to make the situation worse.

We don’t know what to say to people who are different from us in some way, so we don’t say anything at all. We think it’s better to say nothing than to say the wrong thing. We feel more comfortable abandoning people than risking a situation where we might flounder or say something stupid.

I lost one of the best friends I’ve ever had, Sandi, to cancer almost a year ago. I remember sitting at her kitchen table last summer as she told me that she would see people she knew in the grocery store and they’d escape to another aisle so they didn’t have to chat with her. It made me angry. Yet, I don’t want to think that all of those “avoiders” were terrible people. I think that many of them avoided her because of their own fears and insecurities. I have to wonder if they just didn’t know what to say–so they didn’t want to have to say anything. It still bothers me that people were uncomfortable seeing Sandi after her diagnosis, especially because she was the type of person who was really good at making everyone around her feel comfortable and at ease.

It bothers me that we run away from people who need support because we worry we are going to say the wrong thing or because of our own issues. When I talk to people who have been diagnosed with Alzheimer’s or a related dementia, they often tell me that friends just disappear. It makes me sad. However, I’m an optimist at heart, and I can’t think that all of these people who disappear are awful human beings. Most of the avoidance of those who have dementia is based on fear. Fear of awkwardness. Fear of not knowing what to say. Fear of doing the wrong thing. Fear of the same thing happening to us. Sometimes being there for someone takes us out of our comfort zone. We need to do it anyway.

And I can apply those same thoughts to situations where people have other serious illnesses, are caregivers, and have lost a loved one. (I notice when someone has lost a loved one support peaks at the time of death and the funeral….and then abruptly decreases as life returns to “normal” and there is no socially mandated way to support someone.) We feel inadequate to help people, so we don’t even try.

On a personal note, I have a family member with a serious mental illness. At times, I’ve felt avoided by people I thought were friends. Looking back, I’m sure they were uncomfortable and didn’t know how to support me, so they just thought it was better to make themselves scarce. The people who reached out to me when things were rough weren’t always the people I expected, but I will never forget who they were. They didn’t know the perfect thing to say or do, but they reached out anyway.

It is not okay to avoid people who are struggling because we are afraid. Sometimes it’s gonna be awkward. Sometimes we won’t know what to say. Sometimes we will say something that doesn’t come out right. And sometimes we will have a major foot-in-the-mouth situation. (I’ve had many….) But it’s okay.

I’ve seen some articles online with titles like “10 Things Not to Say to Someone with Cancer” or “What You Should Never Say to Someone with Alzheimer’s.” I appreciate the notion, but I also wonder if articles like this increase our anxiety about interacting with someone who has a serious illness. Instead of focusing on making a positive difference (what we should say and do), we become more censored, more hesitant–because we don’t want to say the wrong thing. Sometimes I feel like telling us what not to say to someone makes us feel like the distance between us and them is much larger than it really is.

Here are my rules for supporting someone with dementia and their family (and you can apply these rules to others who might be struggling as well):

1. You will say the wrong thing. Just accept that at some point you will say something stupid.

2. There is no right thing to say anyway. No matter what you say, the person will still have dementia. What you say or do can’t fix that. (You aren’t that powerful.)

3. After you’ve accepted that you will say the wrong thing and you can’t cure illnesses, keep showing up–literally and figuratively.

Last week, I had breakfast with a woman whose husband has Alzheimer’s. She told me that she really only had one friend these days. All of her other friends had (as she said) “made like trees and left.” However, she managed to not be bitter. She explained that she knew it was hard for them to spend time with her and her husband. She realizes she and her husband are a scary reminder of what could be in her friends’ futures.

“They don’t know how to act,” she told me. “The life I’m living right now is terrifying to them. I get it and I’m okay with it.”

Maybe she was okay with it, but her justification of their absence made me feel like crying.

Setting Yourself Up for Success in Dementialand

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In 2006, my husband Bill and I adopted a dog. Although Bill had dogs as kid, Gus-Gus (a kind of ugly but endearing rat terrier mix) was my first dog. He was no longer a puppy when I started thinking about signing up for obedience classes. I asked the teacher, Connie, if she thought it was “too late.” I had no idea how this dog training thing worked.

She told me, “Oh, we’re not really training the dog anyway, so it doesn’t matter how old he is. We’re training YOU.”

After starting the classes, I understood what she meant. Whenever I would complain about something Gus-Gus was doing “wrong,” she would point out how I wasn’t setting him up for success. According to Connie, Gus-Gus never messed up, but Elaine did. When he wasn’t well-behaved, I was failing to set him up for success.

A woman in the class had a goldendoodle who had freaked out at the farmer’s market and knocked over a whole table of vegetables. The women came to class the next week complaining that her dog was “wild.” Connie told her that she had failed to set the dog up for success. You don’t take an anxious, reactive, food-motivated goldendoodle to the farmer’s market and expect good results. You’re not placing him in an environment where he’s likely to succeed.

Although Gus-Gus has many great qualities as a dog, he does have a flaw. He doesn’t do well with children. He’s never bitten a kid or anything like that, but he’s obviously uncomfortable around them. If there are kids playing in front of our house, he barks at them. We once noticed he was doing this very low-grade growl while a diaper commercial was on TV. Since we don’t have kids, this is an issue we’ve been able to work around.

When we were house hunting this spring, there was a place I liked quite a bit. Amazing wood floors. Nice touches in the bathroom. Perfect layout for us. And then we looked out the back door. About five feet beyond our property line was an impressive park, complete with slides and monkey bars. This may have been perfect for another family, but I knew that this wasn’t the house for us. Putting Gus-Gus in this environment would not be setting him up for success. We crossed it off the list. (Yes, we took our dogs’ needs very much into account while house shopping. Feel free to judge.)

You probably think that I am going to make a leap from talking about dogs to people with dementia, and you might be prepared to call me out on this comparison. However, I’m going to outdo myself here and compare dogs to all of us, not just those with dementia. And, I’m going to start with college students.

I am a college professor, and I’ve started telling students to set themselves up for success. I don’t tell them I stole the phrase from the lady who taught the obedience class. Now, college students differ in some ways from dogs. One way they differ is that dogs must rely on others to set them up for success. College students should take responsibility for setting themselves up for success.

I was working with a student in setting up her schedule for the upcoming semester. In her program of study, she would need to take four business classes total. She had made it clear to me that she was concerned that these classes would be pretty rough for her. I looked at the draft of her schedule and realized she had three business classes listed.

“Why do you want to take three business classes at once when you could spread them out?” I asked her.

“I hate them and I want to get as many of them out of the way as possible,” she told me. We talked about the pros and cons of doing this. In the end, she decided to take three of the business classes in the same semester. I wasn’t sure it was the right call, but I encouraged her to make her own decision.

She came to my office hours after classes started. She was getting Ds in all three of her business classes. I asked her why she thought she wasn’t doing well.

“I just really suck at this business stuff,” she told me.

“Maybe you don’t suck that bad at the business stuff,” I responded. (Yeah, I know that I have a way with words.) “Maybe you failed to set yourself up for success by taking three at once.”

Here’s the issue with not setting yourself up for success…You lose confidence. If she had taken one business class at a time and done okay it, she might have realized that she wasn’t all that bad at business courses. Instead, she had decided she was worse than she thought.

Among my college students, I see students with 3.9 GPAs and students with 1.8 GPAs. I find that the 3.9 students aren’t always smarter. Sometimes they are just better at putting the odds in their favor and giving themselves every advantage to succeed.

I know someone who is not a morning person but signed up for a 5:00 am fitness class. When she didn’t go regularly, she told me that she just wasn’t able to commit to an exercise program. I’m not so sure that’s really the problem. Maybe she just didn’t set herself up for success. Can she find a class over the lunch hour? Or after work?

If I think about my “wins” in life, I can’t say I owe a lot to being hard-working, bright, or even motivated. I owe a lot to having an ability to set myself up for success. I wrote my dissertation in a timely fashion. It’s not because I’m incredibly smart or diligent. I think it’s mostly due to the fact that I had the forethought to cancel cable for the months I was finishing it. I set myself up for success on that one. (To be fair, I could also give you at least 77 examples of times I didn’t set myself up for success…like the time I had too much Riesling the night before a 20-mile marathon training run and had to bail at mile three….)

Now the jump to Dementialand….

As I mentioned, dogs need someone to set them up for success. College students–including those working on their dissertations–need to take responsibility for doing it themselves. Sometimes people with dementia can set themselves up for success, and sometimes they need a little guidance.

I met with a woman this week whose husband has Alzheimer’s and is struggling in public settings. He gets frustrated that others are being loud to the point that he’s gone over to diners at restaurants and suggested that they keep it down—even when they’re not really being loud. She tells him that he needs to calm down. Then, not surprisingly, he gets annoyed with her.

It’s not a great dining experience for either of him. Yet, they keep going out to eat and the pattern keeps repeating itself. She said they’ve had to ask for their food to-go several times because he has what she calls a meltdown. And then she confessed that she feels like having a meltdown because it’s such a disaster.

I explained to her a bit about how the dementia brain struggles to process lots of stimuli at once. In short, there is just too much going on for her husband to negotiate. His brain gets tired of working that hard, and he gets frustrated. He’s being put in an environment that is not a fit for him. In other words, he’s not being set up for success. What could be done differently to set him up for success? Could they eat out at an “off” time when the restaurant isn’t busy? Could they ask to be seated in a quieter area of the restaurant? Could they get take-out and go to a park?

I have seen plenty of examples of how people with dementia are capable of more than we think…if they are set up for success. I know a guy with dementia who was able to keep his job for several years after diagnosis because his employer was willing to set him up for success by modifying his work environment and job duties. A friend of mine with early onset Alzheimer’s started becoming anxious at the grocery store. It was “too much, too many choices, too many people.” She set herself up for success by shopping for food basics at the gas station/convenience store. It was smaller and less overwhelming. Her kids were able to go to the “big” grocery store when she needed specialty items.

A woman I know has learned that her husband with dementia can still brush his teeth–but only if she sets him up for success by leaving his toothbrush out for him. She also knows that he enjoys running errands with her, but if she asks him to go on a day when he’s tired, she’s not setting him up for success.

I have to admit that when I first meet someone with dementia, I take a mental snapshot of where they are at on their journey and what they may (or may not) be capable of doing. However, they are often able to exceed what I perceive as their limitations. I find that those who are able to surpass what I thought they were capable of are those who are able to set themselves up for success and have loved ones who support and participate in this effort. I should know not to make judgments about people’s abilities. I miss the mark a lot.

Yet, the more I think about it, that’s true of life in general…whether you live in Dementialand or not.

As for Gus-Gus, we still work on setting him up for success, even though he’s almost 10 years old now. That means if you bring your kids over, he’ll just hang out in the basement.

A Confused and Frightened Traveler in Dementialand

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Last week, I was flying home from the Alzheimer’s Association International Conference in Washington, DC, when I did something that doesn’t make me proud. Actually, it’s more what I didn’t do than what I did do that has been bothering me.

I had spent the previous evening with my wonderful friend Dana, her boyfriend Brian, and their adorable (I do mean, adorable) dog Peanut. I think my Uber–a new experience–got me back to the hotel a little before 2 am. As I got up the next morning and packed up my suitcase, I found myself dragging a bit. Okay, maybe a lot. 

Then I got in a filthy cab with a driver who kept offering me gum. He told me no fewer than four times how much he enjoys Trident Peach Mango gum. He really, really wanted to share that gum. I was convinced the gum was actually laced with a sedative. I should’ve gone with an Uber again.

I had been told by several people that it would be more than adequate if I arrived an hour in advance of my flight out of Washington Reagan Airport. However, the security screening lines were ridiculous, and I got a little nervous. There were four lines from which to choose. I chose one of the center ones. As stated in the law of travel, the line you choose will be the slowest-moving line…and so it was.

I had been standing in this line for about 15 minutes when I noticed a tiny older African-American woman with a large suitcase on rollers standing outside the security screening area. Although she had on nice clothing, she had misbuttoned her shirt and it was half tucked into her long skirt. She looked confused, almost terrified. It seemed that she knew she needed to go through security, but she couldn’t figure out how to get in the line. She was pacing back and forth, muttering to herself, trying to interpret all of the lines and figure out where she needed to be.

I knew right away that she had a problem. If I were a betting person, I’d bet she had dementia. However, she could’ve had a mental illness, like schizophrenia. Maybe she took a medication that morning and had a bad reaction. I’ll never know. What I do know is that she seemed frightened. And hundreds, if not thousands, of individuals rushed around her. No one stopped.

It surprised me that she had gotten to the airport security area. I don’t know if she had checked in with the airline. I would hope that they would have realized something was wrong. I wondered how she got to the airport. It didn’t seem possible that she could have safely driven there. Had a family member dropped her off? Had she taken a cab? It amazed me that anyone would have dropped her off and assumed she could navigate the airport on her own.

As I watched everyone–business people, tourists, airport employees–pass her, I noticed that they looked at her, saw her distress, and then looked away. As much as I hate to admit it, it’s what I do when I see a homeless person. If you look away quickly enough, you can pretend you never noticed them. And if you didn’t notice them, you don’t feel obligated to help.

Why didn’t anyone help? I don’t think everyone who passed without helping her is a bad person. I’m sure some of those individuals were uncaring, but certainly not all of them. I think they didn’t quite know what to do. They weren’t sure what was wrong with her, and it made them uncomfortable. And, of course, some were in a hurry. After all, it was an airport. Some people turn into crazy self-absorbed beasts when they travel.

Looking back, I have to wonder if some of the people who saw her but didn’t help were also traveling home from the Alzheimer’s conference. I mean, there were 4,000 of us (Alzheimer’s researchers and practitioners) in DC. How’s that for irony?

Why didn’t I help? By the time I saw this woman, I had already been in line for 15 minutes. I watched her stare at the lines, not knowing what to do, for at least another 15 or 20 minutes. To help her, I would have had to get out of line. I wasn’t sure if I might be in jeopardy of missing my flight. If I missed the flight, I wasn’t sure how the university would feel about paying to re-book me. (Actually, I’m pretty sure I knew how they would feel, which is why I stayed in line.) I was sure that in time someone who had a few extra minutes would stop to help her. I hate to think of it this way, but I didn’t help because I thought someone else would help–someone who had more time. Are these good excuses? Absolutely not.

I work to promote the idea of dementia-friendly communities. I do community education on how we make can make life safer and more rewarding for people with dementia. And, yet, I saw someone with dementia who was struggling, and I didn’t do anything.

To be fair, I asked a TSA agent who was patrolling the lines if he might be able to go see if she needed help. He said that he wasn’t able to leave his post. When I finally got to the front of the line, I presented my boarding pass and ID to a different agent. I pointed out the woman and asked if there might be something that could be done. The agent barely looked up. She told me that the woman needed to get in line to go through security rather than just “pacing around.” (Well, obviously. Thanks, lady.)

I took my laptop out of my bag and removed my shoes. I kept looking back at this woman. She seemed to be getting more anxious and agitated. I made one more attempt to get her help. I told the agent who was shuffling travelers through the checkpoint that there was a confused and distressed woman who might need help. He herded me through without acknowledging he had heard me. I said it again.

He responded, “Ma’am, keep moving.” So I did…because I wasn’t sure what would happen if I didn’t. Even as a grown-up, I tend to be pretty obedient to authority. I looked back after going through the checkpoint to see the woman still pacing around and muttering to herself. I sat there, putting on my shoes, and watching her. I think she might have been crying by then but I was too far away to tell for sure.

If I had it to do over again, I would’ve gotten myself out of line to help her. I’m not sure exactly how I would’ve helped her and I might have missed my flight, but I would’ve figured it out. Sometimes you just do what you gotta do and worry about the details as you go. Do the right thing and deal with any consequences later. 

I was telling a friend this story a few days ago. She reminded me that I cannot help everyone with dementia, and it’s not my personal responsibility to do so. She said that there are certain situations that are out of my control and I need to stop beating myself up over this. She was trying to make me feel better.

I appreciated her consoling me…but it doesn’t change the fact that I was traveling home from a conference on dementia when I failed to help someone with dementia.

She’s right that I can’t help everyone with dementia, but I could have helped that woman.

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

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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.

Welcome to the Real and Non-Perfect Dementialand World (and What to Say if You Want to Make Me Super Angry)

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I overheard a bunch of people chatting before a support group meeting. There was a middle-aged guy updating some other family care partners about his wife with dementia. I need to tell you that I am going to change a few details here so this person isn’t as identifiable. It’s pretty typical that I do this, but I’m making a special effort here because I need to tell you about something he said that had me pretty bent out of shape.

The man was well-dressed and handsome. He seemed confident, and I could tell that he was a long-standing member of the group that others looked to for support. I couldn’t help but think he looked a bit like a younger-ish Harrison Ford…think somewhere between Star Wars and The Fugitive. 

He explained that his wife was continuing to live at home, although her condition was progressing. She was now unable to walk without assistance. She needed help with bathing, toileting, and eating. He told the group that his friends and siblings were trying to convince him to considering placing her in a nursing home, but he “could never do anything like that to his wife.”

“I love her too much to put her in a place like that,” he said, shaking his head with a huge emphasis on the word “that.”

I know he loved his wife. I know he was committed to keeping her at home because he cared about her. Yet his comments made me cringe. I cringed because a lot of people love their family members with dementia but are unable to keep them at home. I cringed even more because I knew he was talking directly to some of the people who were unable to keep their loved ones at home, and I worried he was making them feel like crap. Everyone’s situation is different, and his comment came off as judgmental considering his audience.

I do a good job of biting my lip in such situations, but my husband tells me I don’t have much of a poker face. I’m sure I was glaring at this guy. If looks could kill, he would’ve dropped dead before the support group meeting even started.

I have no doubt that this gentleman was a tremendous care partner for his wife. However, he also had some resources that helped him keep her at home; some resources that not all care partners have. First, he was in his late 40’s and in good physical condition. He was able to lift his wife, who happened to be much smaller than he was.

I found out later that he was a successful business owner in the town I was visiting. Although he had a busy career, he could often work at home and had the ability to make his own schedule. In addition, he had the financial resources to hire in-home assistance for a several hours a day. Furthermore, he seemed to have friends and family who were willing and able to come over to give him a break when he needed one.

I give the guy a lot of credit. He had a system in place that allowed him to keep his wife at home at a point when many people with dementia have transitioned to a nursing home. It took organization and dedication, and I have no doubt he did it out of love. He had the option to keep her at home. It’s wonderful he was able to do so, but it isn’t the right decision or a feasible alternative for everyone.

I have to be honest and tell you that his line about “loving her too much to put her in a place like that” really stung. I don’t think he meant to offend, but that doesn’t change the fact that it just plain hurt. It stung professionally because I work with many family care partners who must make the choice to place a loved one with dementia in a facility–not because they don’t love them–but because it is the best option they have with the resources they have available.

It’s a rough choice to make, and I spend a lot of time telling these care partners that they need to let go of the guilt. I care about these people, believe they love their family members, and know how hard they’ve tried to make the right decisions on a difficult road.

Perhaps it also stung me personally. My grandma spent a short time in a nursing home at the end of her life. Although I’m sure he didn’t mean to, this guy had implied that my family didn’t love her enough. We did love her enough. That guy should be glad I didn’t tell all my cousins about his comment.

Love is important. I don’t know what life is without love. Yet, love doesn’t erase our financial, physical, and emotional limitations. We can’t all quit our jobs to care for a loved one 24/7, and not everyone has a flexible work schedule. I talked to a care partner who recently told me that she had exhausted all of her vacation taking her mom back and forth to Mayo Clinic to see a neurologist–before her mom even had an Alzheimer’s diagnosis. Her boss had told her if she had to leave work again due to a crisis with her mom, she’d be fired.

Some care partners have kids. The other day I talked to a stay-at-home mom who takes care of her three young children during the day. It seems as if some members of her family have assumed she can help her mother-in-law with dementia during the day….because she doesn’t work. (I have to be honest in telling you that taking care of three small children seems like more work than what I do at work.) Even the most amazing women have their limits.

Sometimes in our attempts to keep our loved ones with dementia at home, we overlook potentially risky situations. They may be risky to the person with dementia (e.g., wandering, falling down stairs), but they may also be risky to the care partner. It’s no secret that caregiving for someone with dementia can take a toll on a care partner’s heath. I’m talking about both physical and mental health. (No matter how much tiny women love their spouses with dementia, they still can’t lift large men without getting hurt. And people need sleep.)

I can show you research that supports this, but I’ve seen plenty of first-hand evidence as well. Often, it is not a change in the person with dementia’s health that triggers placement in a facility. People with dementia frequently move to nursing homes because their loved ones have increased health concerns and can no longer provide care.

I recently met a school counselor whose husband has Lewy-Body dementia. She knows he will soon need 24/7 care, and she understands that it is not realistic, considering her family situation, that he will stay at home for the duration of his disease. She is struggling with the right time to transition him to an assisted living.

I was livid when I found out that one of her immediate family members had said to her, “If he were my husband, I’d quit my job to keep him at home.” I’m pretty sure she could see the veins in my forehead when she told me this… Sure, if you are financially able to quit your job and this is the right option for you, that’s fantastic. But this is the real world. Who is going to pay the mortgage? And this particular woman said that her job was the only thing keeping her sane on this journey.

Someone I know said something a few weeks ago that has stuck with me. I had what Oprah would call an “aha moment.” This woman told me that her daughter had been raped decades earlier. After the rape, many people made comments that started with “If that were my daughter, I would….” Of course, they would then end the statement with something that she had not done. She promised herself that she’d never make a similar statement to someone who was going through a tough time. After she told me this, I made the same promise to myself.

I’ve heard many people say that they would never place a loved one in a long term care facility. If you want to see the veins in my neck pop out, say that to me. In a perfect world, we could confidently say we’d never make that choice. If this were a perfect world, I could say that my love would keep my family members from living in a nursing home. But this is not a perfect world. Love doesn’t keep people from getting sick or make them better, and it certainly doesn’t prevent nursing home admittance.

Here’s the take home message…You may have had to make the hard decision to transition your loved one to an assisted living, nursing home, or memory care community. (And if you aren’t there yet, this may be in your future, whether or not you realize it.) You probably struggled with it. You hoped the timing was right, but you’ll never know for sure. Some members of your family may have even disagreed with you on some aspects of this decision, and you had to defend your thinking…when you weren’t so sure yourself. There were probably moments where you felt like an awful person.

Don’t let anyone make you feel like you made the wrong call because it’s not the one they made or because they claim it’s not the one they would make if they were in your shoes. Maybe they made a different call, but they are a different person in a different situation. And if they haven’t had to make that call, they should shut up about what they would do–because they really don’t know.

You are not less of a care partner because your loved one lives at a facility. Your responsibilities may be a different than if your loved one lived with you, but you are not less competent, less caring, or less worthy. Don’t feel like a failure. Stop second-guessing yourself. Stop feeling guilty. Stop worrying you’re not a good wife, husband, sibling, daughter, son….

You did the best you could with the options that were available to you. Sometimes life presents us with a bunch of alternatives, and they all suck. (I’ve tried to rephrase that last sentence about ten times but I can’t come up with anything better. Sorry.) You have to pick the one that sucks the least, for you and for the people you love. And then you move on and make the best of it.

Welcome to the real and non-perfect world.

Following Up in Dementialand

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Several months ago I wrote a blog post about why I dislike the movie, The Notebook. In short, I take issue with how it presents Alzheimer’s. On an unrelated note, I think it promotes stalking as romance.

You can read all about it here:

https://welcometodementialand.wordpress.com/2015/03/09/my-least-favorite-dementialand-movie/

I had no idea the Facebook messages and emails I would get after this post. Sure, some people agreed with me. Other people sent me comments like:

“Chill, honey, it’s just a movie.”

“So what if it’s not realistic. It’s a damn movie. Relax.”

“You don’t seem to understand the purpose of a movie. Why do people have to overanalyze everything and take away all the fun?” 

I was surprised that this post caused a stir, but I’ve realized that I’m a poor judge of which of my blog posts people will be controversial. I never would have guessed that my post about The Notebook would earn me the most hate of all 50-some posts I have written. People acted like I was killing kittens. And I can laugh about this now…

I predicted that Monday’s post about care partners who pray for their loved ones to pass away would offend someone. I thought I’d get a few emails from people who didn’t like the way I presented this, or maybe were just uncomfortable with the whole premise.

I got a little bit of feedback on Monday morning, mostly from people who said they could relate to the post. A few people thanked me, and in general people said reading the piece made them feel a bit more comfortable with their experience of wishing a loved one would die–rather than continue to live a life that they were pretty certain wasn’t worth living. I went for a run and checked my email when I got back. And whoa.

I had a lot of emails. Nineteen to be exact. They were from individuals who had experiences to share that related to the blog piece. Many of the emails were from care partners or former care partners of those living with dementia. However, quite a few of the emails were from those who had lost a loved one to cancer or another illness. And I thank those of you who gave me permission to share parts of your emails and Facebook messages. (A few people also posted very insightful comments on the actual blog post, if you are interested.)

Here are excerpts from the messages I received:

“My mother in law lives with us and has vascular dementia. I hate to say it, but I’m ready for her to pass away. It’d be different if I thought she had any joy in her life now. But I don’t think she does. There is a time when somebody is just done. She’s done. But her body is still here. I haven’t told my husband this. I don’t know if he’s there yet.”

“I have felt guilty for years because my mom was dying of cancer and I wished it would just be over. I prayed for her suffering to be done. Then when she died I felt awful. Not because she was gone but because I prayed for her to be gone. But she was suffering. I just couldn’t do it anymore.”

“My mom has Alzheimer’s and she has had it for about 10 years. The first 5 or so years she was happy. Now she’s not. She lives in terror. I know it must be scary for her. It’s scary for me. I just want it to be over. I want the nursing home to call me and tell me she’s gone. When the phone rings, I hope they are calling to say she’s gone. Maybe that’s awful, but it’s the truth.”

“My dad doesn’t want to be here anymore. He has cancer and Alzheimer’s. We don’t make our animals suffer. We know the kindest thing is to end their suffering. But people have to suffer until the bitter end and we have to watch it….Dad asks me to help him end it in a joking way. He says I should just shoot him and laughs. But I wish I really could.”

“For many years I have felt bad about praying for my mom to die when she was at the end of her life. The doctor kept giving her antibiotics and meds. I wanted them to stop giving her the medicines but I didn’t know how to tell them that and was scared they’d think I was a bad person. So I kept giving her all these medicines but hoping they wouldn’t work…Reading this made me feel more normal.”

“My mom had Alzheimer’s and I prayed she’d die for over a year. After she finally passed, I missed being in dementialand. I guess I got used to living there. I also felt useless like no one needed me. I didn’t know how much I needed to be needed.”

“Amen. My husband is at the end of dementia and has COPD. He is tired. I am tired. I don’t eat, I don’t sleep, he doesn’t know what’s going on. I want to fast forward time. If I had a remote control I’d hit fast forward. Then I think about how I know that after he’s gone I will want to rewind but still can’t stop from wanting to hit fast forward. Don’t know how to change how I feel.”

“I thought I would feel sad when my sister died of Alzheimer’s but I didn’t. I really just felt mostly relief. But I still feel horrible that I felt relief. I feel like a good sister would’ve been sad. This blog post helps a little.”

I usually feel good when I write something that people “get.” If people say they can relate to something I write, I feel like I’ve been successful. However, I didn’t get that feeling as I read through people’s comments on this one.

I just felt…sad.

Praying for the End in Dementialand

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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.

Friendship Inside (and Outside) Dementialand

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A wonderful former student of mine now works at a memory care community. A woman with Alzheimer’s, Angela, moved into the facility. To the rest of the world, Angela lost her husband to cancer about ten years ago. In Angela’s world, her husband had past away last week.

As you might expect with someone who lost the love of her life last week, she spent a lot of time crying. When asked to participate in activities, she said she wasn’t interested–because her husband passed away last week. She wouldn’t eat much. As with many individuals in grief, she had no appetite.

Some employees tried to convince Angela that her husband had been gone for ten years rather than a week. Instead of validating her feelings, the staff was telling her that her sadness wasn’t real. This only made her more upset.

After a few months, a new woman, Lou, moved into the memory care community. Lou also had Alzheimer’s. On her first day there, she found Angela crying in her room. Lou walked in, sat down, and asked Angela if she was okay. Angela explained that her husband had passed away last week. Lou gave her a hug. And they sat together most of the day. Angela talked about her life with her husband…their homes, their travels, their kids. Lou listened as someone does when their friend is struggling. She had no place to be and nothing to do. Her only focus was Angela.

The next day was nearly an exact replay of the day before. And so was the next day. And the next day. The staff was relieved that Angela had a friend. Lou’s family commented that Lou seemed to have more of a sense of purpose than she had in a long time. She felt needed in a way that she hadn’t felt needed since starting to show dementia symptoms. Sometimes life brings you the perfect friend at exactly the right time.

The staff assumed that Lou believed that Angela’s husband had passed away last week. While another person might tire of hearing the same stories about Angela’s husband every single day, Lou was hearing them for the first time. They thought that this was the value of their friendship–that Lou was a part of Angela’s reality. When another person might tire of expressing their sympathy day after day after day, Lou was doing it for the first time–every single day.

Or so they thought…

After about a month of friendship, Lou was on her way to Angela’s room when she told my former student, “I have to go see my friend. She thinks she lost her husband last week but he’s really been gone a long time. I feel so bad for the poor thing so I let her tell me the same stories day after day.”

“You know that her husband didn’t die last week?” my former student asked.

“Well, of course,” said Lou. “But I just keep showing up. It’s what friends do.”

Friends just keep showing up.

When I think of my own friends, I realize they are a lot like Lou. They keep showing up for me. I may not have dementia, but they do listen to me talk about the same issues over and over…and over. They are the themes of my life. And on this life journey, I realize that many of my issues are things that won’t ever truly be solved. They are issues that I must learn to cope with…sometimes by venting to my friends. And (my apologies, friends) I am sometimes like an Ipod on repeat, playing the same song continuously. When I consider the last ten years, I realize that I have the same redundant struggles. They just manifest themselves in different ways as my life changes. And yet my friends keep showing up. I do the same for them.

We are all like Angela in a way. We struggle, and we voice those struggles to those closest to us in an effort to be supported. It’s not a one time deal. Some of us complain about our jobs or our relationships. Some of us need to vent about parenting. We have persistent insecurities, weaknesses, and pet peeves. These are not things that we tell our friends about once and never again. They are continuous topics of conversation. If we didn’t care about our friends, we wouldn’t have the same conversations, with no resolutions, again and again. But we do it–because it’s what friends do.

Lou reminded me of something else that friends do. Lou didn’t try to tell Angela that her husband passed away ten years ago. She accepted Angela’s grief for what it was, and she never questioned whether Angela should feel sad or not. Angela felt sad, and Lou responded to Angela’s sadness. That’s all there was to it. We don’t judge whether our friends’ reasons for being upset are valid. That’s not our job. If our friend is upset, it’s our job to keep showing up…because that’s what friends do.

Maybe friendship inside Dementialand isn’t all that different from friendship outside Dementialand.

Contradictory Advice in Dementialand

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I was recently talking to someone who worked at the Alzheimer’s Association about some of the challenges of working with families and individuals affected by dementia. I mentioned that I feel like I give people contradictory advice. First, I tell them to live in the moment. Second, I tell them to plan for the future. Sometimes I give those two pieces of advice in the same sentence or on the same Powerpoint slide.

“But isn’t that what we really all should be trying to do?” said the woman I was talking to. “Whether we have dementia or not, shouldn’t we enjoy the moment but also prepare for the future?”

It occurred to me that she was absolutely right—life is about balancing the short-term and the long-term. Your short-term self wants to have a piece of cake and enjoy the moment. Your long-term self wants to consider your health and avoid the cake. Enjoying the moment too much could potentially be a detriment to your plan for the future, but if you’re always planning ahead and never have any fun, what’s the point of life?

I’ve sometimes struggled with the balance between enjoying the moment and planning ahead. I remember telling friends in college that I couldn’t go out one night because I had to work on a paper. They asked if the paper was due the next day. Nope. It was due in three weeks. I just wanted to get a jump on it. (I wasn’t very much fun in college. I’m a lot more fun now, actually.) Yet, as a college professor, I see a lot of students who error in the other direction in the balance between enjoying the moment and planning ahead. The point is that it’s a balance. You want to have fun in college, but you can’t have so much fun that you screw yourself over in the future.

Living in the moment has always been easier said than done for me. I don’t live much in the past. I don’t spend a lot of time replaying and regretting my decisions. It’s not that I’ve always made the right choices. It’s just that looking back can be a waste of time, and I don’t like to waste time. However, I’ve tried to live in the future. I’ve played the “I’ll be happy when….” game. I’ll be happy when I finish this marathon. I’ll be happy when I finish my PhD. And, spoiler alert, after both of things were accomplished…I was no happier. It has been my journey in working with people who have dementia that has taught me to live, laugh, and love in the moment–or at least to take a big step in that direction. I’m still a work in progress.

But there is a risk to always living in the moment. In order to maximize the possibility of success in the future, we sometimes have to do stuff that doesn’t bring us much joy in the moment. We have to pay bills when we want to spend our money on things that make us happy NOW. We can’t eat what we want all the time…or we end up fat and unhealthy. We have to go to work because if we don’t go we will get fired. If we all did exactly what we needed to do to enjoy every moment to the fullest, we’d all be broke, fat, and unemployed. It’s about immediate gratification versus delayed gratification. It’s about what we want to do versus what we should do.

Everyone has that one friend who is a lot of fun. They may be the life of the party. Maybe they drink a little too much. Maybe they don’t always make the best decisions (e.g., cheating on a partner, taking a few too many “liberties” with their job). Their life is sort of a train wreck. If you think about it, they live in the moment a little too much–without thought to the consequences. If you knew me in college, you may have seen me sitting awkwardly in the corner at parties admiring this person…thinking they seemed pretty cool and wishing I had their moxie. Now, more than a decade later, I’m thinking maybe my envy was a bit misguided. I guess life is all about balance.

A family negotiating dementia walks a fine line. My advice to them is all over the place. Find something to smile about. Start researching local nursing homes. Don’t be afraid to laugh. Talk about end of life decision making. Go over your finances. Plan some fun things to do together. Figure out what’s available from local agencies for respite care. I’m sure sometimes they want to punch me. I don’t blame them.

A family that focuses too much on living in the moment might be unprepared for the challenges ahead. They may have to choose a sub-par nursing home because they didn’t have a plan. They might have to make decisions about care in crisis mode. A family that focuses too much on preparing for the future might regret missing out on joyful time that could be spent together because they are dreading the decline of their loved one.

And I have to be honest here… If you have dementia or have a loved one who has dementia, there will be moments of joy and hope. However, there will be moments where you can’t find that joy and hope, even when you look as hard as you can possibly look. Those are the moments you just gotta survive. You have to make it to the next moment–where maybe that joy and hope will be within reach again.

There are days when you can smile and laugh. Then there are days where you just gotta hope that tomorrow is a little better. That’s the thing about living in the present….living in the present is great when you can find joy in the present. When you can’t find joy in the present, it’s okay to look to the future a little bit. And maybe that future is only five minutes away. Perhaps there’s something right around the corner that’s going to make you smile and laugh. You have to believe that.

I am working summer orientation right now. I do advising for incoming freshmen. The more I think about it, I realize that I give similar advice to individuals and families impacted by dementia and to college freshmen. I state it a little bit differently. I tell freshmen to have fun but not so much fun that they have to go back home and live in their parents’ basement. I tell those affected by dementia that they need to focus on the moment but set themselves up for success (and as little stress as possible) in the future.

But we all need to enjoy the moment while we prepare for the future.

As for me, I no longer opt out of fun events to work on things that aren’t due for another three weeks. In fact, I’ve gotten better at procrastinating. It’s all about balance.