When Annoying People (Like Me) Visit Dementialand

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A guy yelled at me because I talk too much. Oh, and because I’m loud and annoying. And maybe he had a point.

I was doing a Memory Trunks program. I had a circle of about a dozen people in varying stages of dementia. Although I do my best to get people to talk, I was failing miserably on this particular day. Long silences. Empty stares. I’m used to it, but time was going slowly.

I like to think that it’s okay if people don’t join in the discussion. There is still value in them being there. But, to be honest, it’s a lot more fun when I’m not the only one talking.

A guy with younger-onset Alzheimer’s walked into the room. He stopped for a moment and stared at me. Then he started yelling.

“She’s talking too much!” he screamed. “She’s too loud! It’s annoying. Her voice is annoying. Make her leave!”

It’s not the first time I’ve been told my voice is loud and annoying. And not just by someone with dementia. I lecture to large groups and teach fitness classes in a huge gym. I’ve had students tell me that they sit in the back on my classroom because it feels like I’m shouting at them when they sit in the front. No one has ever complained that they can’t hear me. I guess I’m just loud. Maybe this guy had a point.

And really…I can see how he thought I was dominating the conversation. I even felt like I was talking too much. I was sitting with a large group, and I was the only one talking. If this had been a cocktail party, I’d have been one of those rude guests who went on and on about themselves.

The staff tried to reason with this guy. “She’s our guest,” one of them said to him. He wasn’t in the mood to hear it, and he continued his rant.

“She NEEDS to leave! I hate her!” he yelled. The staff tried again. They tried telling him that I was a very nice person, that everyone was enjoying my visit, even that he should sit down with the group because he’d probably learn something new.

But reasoning is an ineffective strategy when you are working with someone who is no longer capable of reasoning. To be frank, it doesn’t work to explain things to people with dementia. It’s not that they’re not smart. It’s that their brain is dying. You wouldn’t request that someone without legs run a 5k. Let’s stop expecting people with dementia to do things they aren’t capable of doing.

A better strategy is to change the environment. When something is upsetting someone with dementia, you cannot explain to the person with dementia why it shouldn’t upset them. You will waste a lot of energy doing this. And–think about it–when you are really upset, how do you respond to someone who tells you that you shouldn’t be upset? If you are like me, it only makes you more upset.

So you get them out of the upsetting situation. Or you change the situation that is upsetting. But you don’t tell them why they should change their response.

A better response to the guy who was yelling at me would be to get him out of there. Take him to another room, a room where he can’t hear my loud and annoying voice. Or you give him an IPod with headphones to drown me out.

As people develop dementia, they may feel compelled to do things that we don’t feel comfortable with them doing. Things like driving, mowing the grass, using the oven. I hear statements like, “I’ve told Dad time and time again that he CANNOT mow anymore,” and “I keep explaining to her that it’s not safe to use the oven.”

Families are frustrated and scared. I get it. And they’re doing the best they can. I’m not trying to be critical, but I try to gently point out that these strategies aren’t effective. If it worked to tell someone with dementia that they can’t mow the lawn, would you have to tell them “time and time” again? And if she could understand the reasons why she can’t use the oven, she’d probably be functional enough to use the oven in the first place.

So what do you do? You move the mower. You put it in the neighbor’s garage. Maybe you remove the oven and revamp the kitchen to make it a safer place. You change the environment.

What happens when you rely on logical reasoning when working with someone who has dementia? You pick a lot of fights and you get very tired.

As for the guy who thought I was loud and annoying…After his outburst, a staff member took him into an adjacent room and helped him get started on a puzzle. As I was putting on my coat, he came out and gave me a hug. It wasn’t an apology. He wasn’t making peace with me. I’m pretty sure he had no recollection of how he hated me 40 minutes earlier. Sometimes short-term memory issues aren’t all bad.

A Pointless Story from Dementialand

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I’m not Jewish, just for the record. I may or may not have the nose of a beautiful Jewish woman. That’s not the point here. Actually, I have no point today. This really is just a story. Take it for what it’s worth.

I was at an adult day service center for people with dementia. A gentleman said to me, “You have the nose of a beautiful Jewish woman.”

I had a few students with me, and I could tell they were trying not to laugh. I may have laughed, but I remember feeling flattered. Really flattered. I had the nose of not just ANY Jewish woman, but a BEAUTIFUL Jewish woman. I’ll take it.

I came home and told a few people that I had the nose of beautiful Jewish woman. They seemed to find this pretty entertaining. And none of my friends disagreed.

I went back a few weeks later and saw the same gentleman. He came up to introduce himself. It was obvious he didn’t remember meeting me before. I often see people for the second, 10th, or 100th time while they are introducing themselves to me for the first time. As a general rule, I don’t point out that we’ve met before. However, this time I did point it out.

“We’ve met before,” I said. “You told me that I had the nose of a beautiful woman.”

He said with absolute sincerity, “I don’t think that was me. I wouldn’t have said that.” I shrugged it off, obviously not planning to start an argument. But he thought for a minute.

As I walked away, he said, “But it’s funny that someone else said that to you because I was just standing here a minute ago thinking that you had the nose of a beautiful Jewish woman.”

After I left, I sent a text to my mom telling her that a guy with dementia thought I had the nose of beautiful Jewish woman. She can be pretty quickwitted. In about 15 seconds, I got a text back. All it said was, “I’ve been meaning to tell you about Rabbi Schmuley.”

Well-played, Mom. Well-played.

Careers in Dementialand (Or What Serial Has to Do with Dementialand)

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I was a little slow to the party, but I recently listened to the Serial podcast. It’s a spinoff of This American Life on NPR, in case you haven’t heard of it. If you haven’t listened to it but plan to, there really won’t be any spoilers contained here. Keep reading.

It’s a series of twelve episodes that explores a 1999 murder case. A high school student was arrested for the murder of his ex-girlfriend, but (as you probably expected) there are some who doubt his guilt. My point here is not to discuss his potential guilt or innocence, although if you know me and want to talk about that I’m all in.

My point in this blog is to discuss the defense lawyer entrusted with the case. As I listened to the podcast, I couldn’t help but wonder if she had dementia. Although she was hired because she was well-respected and tenacious, some strange behavior, poor judgment, and lack of follow-through on her part may have played a role in an innocent guy landing in prison. She was having some various health problems, rattled off on the podcast, at least one of which can be linked to dementia. She passed away in 2004.

I’ve heard rumors of the possibility of a new trial because of ineffective assistance of counsel. I would argue that a defense attorney with dementia could be as worthy of a reason for ineffective assistance of counsel as any–keeping in mind, of course, that I know next to nothing about law.

If a person shows poor judgment throughout their lifespan, they are just a person with poor judgment. We all know plenty of individuals who meet that criterion. If a person who previously showed good judgment begins to struggle to make reasonable decisions, there’s a problem that could be health-related. It could be depression, a brain tumor, bioplar disorder, schizophrenia…or dementia. Previously reasonable people do not just begin to behave erratically. Sure, we all make poor decisions from time to time, but conscientious individuals don’t just stop following through on their obligations. Sensible people don’t become unreasonable or illogical.

We think of this happening with people in their 70’s, 80’s, and 90’s. They start giving their money to causes that are not legitimate or leaving their dog outside in sub-zero temperatures. But dementia (and the related poor judgment) strikes people at younger ages. It strikes people at the peak of their careers.

Last year I was fortunate to listen to a panel of individuals recently diagnosed with Alzheimer’s. (For obvious reasons, people with Alzheimer’s are often hesitant to be on panels.) A 50-year-old gentleman on the panel had been diagnosed six weeks earlier. His diagnosis came as a result of some uncharacteristic behavior at work.

After 25 years with the same company, he started mismanaging money. He had combined his own money with a small amount of the company’s money in a bank account. When this was discovered by other employees, they confronted him. He wasn’t defensive or argumentative. He wasn’t remorseful. He just honestly didn’t grasp why this was such a big deal.

We think of dementia as old people being forgetful. That’s a piece of it. But it can be a middle-aged person who was previously an all-star at their job starting to drop the ball. It can be an executive who used to be quite patient blowing up at inconsequential things in the workplace. Or a male manager who starts saying inappropriate things to younger female employees.

There’s little information available on what you should do if you have a co-worker who may have dementia. I’ve heard it suggested that you should sit down with them and ask a non-judgmental question like, “Have you noticed you’re getting frustrated with some of the simple tasks around the office?” How awkward is that? I’ve also heard that you should consider contacting that person’s family, but is that a violation of privacy? We don’t have policies for how to negotiate dementia in the workplace.

Dementia isn’t just about forgetful little old ladies in the nursing home.

Love and Lipstick in Dementialand

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I used to visit a particular nursing home frequently. I often saw a woman with dementia and her husband. She had been at the facility for several years. He lived down the road at a retirement community but spent most of his days with her at the nursing home.

Her makeup was always perfect. Foundation. Lipstick complete with liner. Blush (or rouge, as I’ve learned it is called by older women). It was a bit dramatic for my taste, to be honest, but applied with professional precision.

Her hair was always matted in the back because she was in and out of bed all day. But never a flaw in her makeup.

She was non-verbal and had what I called the dementia gaze. She was looking at you but not looking at you. I often watched her husband assist her with meals. Although it appeared she had no clue what was on the spoon, her husband made sure she didn’t eat anything she didn’t like–although someone might think she would not have known the difference. He’d say things like, “I’m not giving you any broccoli. I know you hate your broccoli, don’t you?” It took him forever to feed her, but he’d always comment that he was retired and had nowhere else to be.

It didn’t matter to him that she didn’t seem to know who he was. He was there for every meal. He chatted with her constantly, sometimes telling her awful jokes that were often a bit off-color. He talked about their family. One day he brought in a picture their granddaughter had drawn. He was unfazed by his wife’s apparent lack of response.

I saw them in passing for several months. I typically exchanged pleasantries with the husband. One day he told me they were celebrating an anniversary. “You know it’s a special occasion,” he told me, “because she’s wearing her red lipstick instead of her pink.”

I had been curious about the perfect makeup, to say the least, so this peaked my attention. He added, “You know, I’m her makeup artist.”

He told me the story. She had been diagnosed with Alzheimer’s a decade earlier. Always a beautiful woman (and never seen without makeup in public), the thought of not being able to apply her own foundation, rouge, and lipstick was terrifying. He told her that was no big deal…he would learn to apply her makeup. And he did. I told him that I’d let him put makeup on me anytime, and he seemed flattered.

Life had another curve ball in store for this couple. He was diagnosed with cancer and underwent surgery to remove a large mass from his pelvis. Sadly, he never woke up. She lived several more years. It’s not unusual that the caregiver passes away before the person with dementia, but this situation was really difficult for me to process. I hated going to the nursing home and seeing her without her makeup.

But I don’t think she missed her husband. You can’t miss your husband if you don’t remember you had one.

I didn’t mean for this post to be so sad, really. What I want you to pull out of their story is not sadness or tragedy (although there’s certainly a great deal of sadness and tragedy here); it’s LOVE. Focus on the love. The world would be a better place if everyone was loved like she was loved.

I’ve seen love in Dementialand that I’ve seen few other places. We continue to love people who don’t know who we are. Our spouses and parents view us as strangers. If someone doesn’t know who are you, can they still love you? Or does it even matter? Because you love them anyway. On most days, I am more in awe of the love that exists in Dementialand than the sadness than inhibits it.

What It’s Like to Live in Dementialand

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A cure will be found for Alzheimer’s. I won’t find it. I’m not even looking. My mission is different.

I go to fundraising and advocacy events. Most of the talk is about finding a cure. It’s a great cause, a good goal. We give money so that people in the future won’t know Alzheimer’s. And I hope they won’t. I write my check.

And yet I sometimes feel like those who currently have the disease are lost in the shuffle. We may hold them up to other people and say, “We must cure THIS. We don’t want people to be like THIS.” They are our greatest fear. That are what spurs us to donate money to help find a cure.

But in all the fundraising and public relations work, we sometimes do little to try to understand the people with the disease. We can’t decipher their words, but we nod as if we can. We talk about them like they aren’t there, and then we speak to them like children. We scold them, correct them, make comments that imply they are stupid. We don’t stop to think what they might be going through. I hear, “Oh, it’s so much harder on the family,” and “Grandma doesn’t know what’s going on anyway.”

I know this disease is hard on families. I speak at caregiving conferences and support groups. I have family members eloquently tell me (sometimes with beautiful analogies) how difficult negotiating Alzheimer’s is. Some have even written poetry about the “long goodbye” or the “cruel beast of dementia.” It’s rarer to have a person with Alzheimer’s so eloquent in their description of what they are going through. Just navigating life with Alzheimer’s is hard enough. Most people with Alzheimer’s do not have enough left over to explain what it’s like to navigate Alzheimer’s.

I once heard a person say, “I have this Alzheimer’s thing. It’s a real catastrophe.” Then she lost her train of thought and started talking about something unrelated.

Family members have every right to complain about Alzheimer’s. But it’s not a picnic for the person diagnosed. Many times they act as if they are okay because they aren’t sure exactly what’s wrong. Nothing makes sense. Sometimes isn’t right. But they’re not sure what so they bury the anxiety inside and smile. If they tried to explain it, it wouldn’t come out right anyway. We wouldn’t listen. Or we’d make them feel stupid.

I gave a presentation once that focused on what it’s like to have Alzheimer’s. There are some fancy ways to simulate dementia, but I didn’t use those. I had people pair up, designated one of them to have dementia, and had the other pretend to be a caregiver. Usually, the person with dementia gets annoyed with the “care” that I prompt the caregiver to provide. And everyone laughs.

A guy came up to me afterward, and he said that his mom had been diagnosed with Alzheimer’s five years earlier. “In the last five years,” he told me, “I’ve never once thought about what it’s like for HER to have Alzheimer’s.”

What?

He said, “No one has even talked to me about what she’s going through.”

We’re so focused on curing a disease that we often forget about the people living with it.

Conversations In Dementialand

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A while back I had a conversation with someone who has dementia. I’ll call him James. The conversation went like this:

James: You made it back from the city, I see! (He’s very enthusiastic about this, and I have no idea what city he is referring to. However, I am happy he’s so glad to see me.)

Elaine: Yes! I always make it back!

James: Well, if it’s not one thing, it’s another.

Elaine: Ain’t that the truth? Such is life. (We both laugh knowingly and shake our heads.)

James: And you sure did a good job with that dog! (Although I have three dogs, James doesn’t know this, and I have no idea what dog he is referring to. I don’t ask.)

Elaine: Oh, that dog can be such a little brat! (We both laugh.)

James: I see how it is. I don’t know what Mom was thinking.

Elaine: Oh, I sure don’t either, James. (And we laugh some more, as I shake his hand and move on.)

A short conversation that would make no sense to anyone who may have heard it, but a really, really good connection that somehow makes my day. It’s about the connection, not the content.

There is a natural rhythm of conversation, and it usually perseveres in those who have dementia after the content doesn’t add up.

Sometimes those with dementia have a go-to line that they use to try to mask their lack of understanding of the world around them. For my husband’s grandpa, it was “You never can tell.” And sometimes it’d make sense.

We’d ask, “Do you think it’s gonna rain?” He’d say, “You never can tell.” We’d ask, “Are the Hawkeyes gonna win on Saturday?” He’d say, “You never can tell.”

However, as the disease progressed, he’d use his go-to line more and more, and it made sense less and less. We’d ask, “What’d you have for breakfast?” He’d say, “You never can tell.” We’d ask, “How do you feel about all this snow?” He’d say, “You never can tell.”

But, still, the rhythm of conversation was there. He knew from the rhythm of someone’s voice when he was asked a question, and he knew when a response was required. If you were doing something else and listening to us talk in the background, you might not notice his responses didn’t make sense.

For some people with dementia, responses become what could be considered jibberish. A few weeks ago, I asked a woman how she was, and she responded with a very enthusiastic, “Dippity doooooo!” She knew I was asking a question, even if she didn’t quite understand the question, and she knew my question required a response, even if she no longer had a way to find those words. When I said I was glad she was having a good day, she responded with a crisp, “Boop!” It was a positive interaction.

I can have a ten minute talk with someone who has dementia, be completely unable to identify what we talked about, and feel like it was a pretty great conversation. Sometimes these conversations are the best conversations I will have all day. But it’s not always that easy.

Sometimes people really want to tell me something but can’t find the words. Imagine how terrifying that could be. You have something you want to express but you cannot find the words because your brain is dying. And then sometimes people just shut down. They stop talking altogether because they feel stupid. They don’t bother to talk because people are always telling them they’re wrong–that Reagan isn’t President anymore, that their kids are no longer in college, or that it’s January and not May. Or maybe they stop talking because it’s hard work.

Sometimes I walk away from Dementialand with some amazing nugget of wisdom that came from a person who has no idea what year it is or their spouse’s name. This happens quite a bit, actually. I got my best advice on marriage from a guy with dementia who told me he had been married for 30 years. What I learned later is that he left his wife after 35 years and he then married a MUCH younger woman, but he didn’t remember that. His daughter told me. I decided to buy into his advice anyway. It was, “Marry someone who laughs at the same jokes that you do.” Somehow, it’s stuck with me.

I never know what to expect from conversations in Dementialand.

Adjusting to Dementialand

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Flashback to the early 1990’s. I am sitting in the basement of my family home. My parents have just told me they are getting divorced. My dad is sitting on the couch. “Nothing is going to change,” he says. Yes, he actually says this.

Nothing is going to change. It’s not true. He knows it’s not true. Even as a kid, I know it’s not true. But he says it anyway.

Why? Because when life threatens to rattle the very ground we stand on, we cling to normalcy. In this case, we cling to normalcy even when normalcy isn’t all that great.

I have the privilege of talking to a lot of families who have recently had a diagnosis of Alzheimer’s or a related dementia. What they want to hear is “Nothing is going to change.” I won’t say it. It’s not true. They want to know that Grandpa will still be Grandpa, but I do to little reassure them of this.

They cling to their traditions, even when they don’t work anymore. They’ve always had Christmas at Grandma’s. They’ll do it again this year, even though it leaves Grandma stressed and frazzled. Grandma loves making the stuffing…except this year she can’t do it. But we still expect it. After all, she is Grandma. It’s what she does.

Mom loves visiting Hawaii. She and Dad go every winter. She’s a little different this year, but she enjoys it there. They’ll still go. Except that flying can be terrifying for someone with dementia. And waking up in an unfamiliar place can lead to panic attacks. Not to mention there’s always a risk that she gets confused and wanders off, looking for something that makes sense.

People with dementia are different than they were. We struggle to accept these changes, so we continue to try to stuff people into the same roles that they’ve always fit into. But they don’t fit anymore. They are different, so we have to be different.

We have to change our routines and our expectations. And just as we adapt to those changes, we must make new ones.

For the record, life did change when my parents got divorced. And I changed with it.

But Is Alzheimer’s the Same Thing As Dementia?

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Question: Is Alzheimer’s the same thing as dementia?

Answer: Alzheimer’s is to dementia….as chair is to furniture. Alzheimer’s is to dementia….as orange is to fruit. Alzheimer’s is to dementia….as beagle is to dog.

You got that? If so, stop reading now. You won’t hurt my feelings.

If that doesn’t make sense or you want to learn more, read on.

Dementia is a set of symptoms. These symptoms might include changes in memory and/or personality, poor judgment, inappropriate behavior, impulsiveness, attention problems, and faulty reasoning. Notice I mentioned that dementia is MORE than memory problems. As a society, we tend to think that getting dementia just means we get forgetful. We lose our keys. We call people by the wrong names. We forget what day it is. And that’s a complete underestimation of how dementia can destroy a life.

People with dementia may show inappropriate sexual behavior toward family and friends. They may make racial slurs toward ethnic minorities at the grocery store. They might forget to pay their bills and find that their utilities are disconnected. It is common for people with dementia to wear clothing that is not appropriate for the weather (i.e., shorts in Iowa in the of middle of January). I once got a call from a woman who was horrified that her mother left her infant granddaughter home alone–because she forgot she was babysitting.

But does someone with dementia have Alzheimer’s? The answer is MAYBE. Alzheimer’s can cause dementia, but many other diseases can cause dementia as well. There’s Lewy-Body Dementia, Parkinson’s, vascular dementia (common after a stroke), Frontotemporal Dementia….Although there are many more causes of dementia, these are among the most common. When someone shows signs of dementia, it’s important to get an accurate diagnosis, and this typically comes from a neurologist, a neuropsychologist, or a psychiatrist.

Alzheimer’s is the LEADING CAUSE OF DEMENTIA. What many people don’t know about Alzheimer’s is that it is a terminal disease. Alzheimer’s kills. It kills because is causes total brain failure. Our bodies cannot continue to function after enough of our brain cells die. When I do public speaking, I often mention in far too casual of a manner that Alzheimer’s is fatal. I am working on that. I need to be gentler with this information. I throw it out there assuming that the families of those with Alzheimer’s know that Alzheimer’s is terminal. I should know better.

My grandmother died of pancreatic cancer. We knew it was terminal cancer at the point of diagnosis. She passed away less than a week later. For those days, my family lived in crisis. We struggled to eat. We struggled to sleep. We cried. But we survived. You can live like that for four days. You don’t do permanent damage to your physical or mental health.

But Alzheimer’s is different. You can’t live in survival mode for the duration of the disease. It is not unusual for someone with Alzheimer’s to live ten years after diagnosis. People cannot exist in crisis for the length of the journey. Care partners must take care of their own health, and they must find a way to seek out hope and laughter. Furthermore, they MUST accept help. In our society, we glamorize the person who sacrifices their own life to care for a loved one. But Alzheimer’s is a marathon. Caregiving for someone with Alzheimer’s and not accepting help is like running that marathon and not drinking water.

So does someone with Alzheimer’s have dementia? YES. Does someone with dementia have Alzheimer’s? MAYBE.

Gifts from Dementialand

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I’ll start by saying that dementia is NOT a gift.

It’s not a normal part of aging. It is cruel and debilitating.

And, yet, there may be gifts that come along with dementia. And when we are given a gift by dementia, we must accept it.

(I tell the following story with the permission of the family it is about.)

I spoke at an Alzheimer’s support group a few years ago. A woman came up after I was done talking to ask a question. She explained that her sister, Suzy (not her real name), had died by suicide eight years earlier. Suzy had been a drug addict who was diagnosed with bipolar disorder. She’d struggled to hold a job and had rocky relationships with her family, including her parents.

Her mother, Millie (again, not her real name) had found Suzy after she passed of a gun shot wound, and not surprisingly Millie had been plagued by depression since the death of Suzy. The situation was even more heart-breaking because Millie and Suzy had a big fight the evening before Suzy’s passing, and Millie had said some things for which she would never forgive herself.

Millie had been on several antidepressants and seen multiple therapists in the years following Suzy’s passing, but nothing relieved the depression which plagued her. In fact, it only seemed to get worse. Millie quit her part-time job, stopped seeing her friends, and barely left the house.

As Millie entered her 70’s, she received a diagnosis of Alzheimer’s. Soon after her diagnosis, Millie began saying things like, “Suzy hasn’t been around much lately. I wonder what she’s up to,” and “I’m hoping Suzy can make it to dinner this week.” Her family realized that she had no memory of finding Suzy after she had passed away. Although Millie struggled to do everyday things like make dinner, put away laundry, and take care of her dog, the depression seemed to lift.

The woman telling me this story could hardly get the next part out without tears. She said, “And it’s so hard telling Mom over and over that Suzy is dead. We have to tell her at least once a day.”

I asked what Millie’s response was when they told her Suzy had passed away several years ago. The woman said, “Well, even though it happened eight years ago, she breaks down just like it’s the first time someone’s told her.”

WAIT. STOP. It’s not “like” the first time someone’s told her. It IS the first time someone’s told her. Each and every time. It is the first time she’s hearing that her daughter is dead. It makes no difference that eight years have passed. It makes no difference that she’s been told literally hundreds of times.

In retrospect, I could have been gentler in my delivery, but I asked the woman to explain to me what it felt like when she was told her sister died by suicide. She told me her legs wouldn’t hold her up and that her gag reflex kicked in. She told me that she called friends to let them know but no words would come out when they answered the phone.

I pointed out that this was similar to what Millie felt every single day when she was told that Suzy was gone. The woman looked horrified but then asked a question that people ask me a lot: “But is it okay to lie?”

YES.

And if you don’t want to think of it as lying, you can call it “therapeutic fibbing” or “stepping into their reality.” Whatever makes you feel better about it. But YES.

Millie lived in what I sometimes refer to as Dementialand. In Dementialand, Suzy was still alive. And, in that sense, Millie’s reality was far more comforting than the reality that her family tried to insist upon.

Her family can argue and correct her all day long (as they were doing), but they can’t get her out of Dementialand. This is apparent when Millie asked again the following day where Suzy was. As a family, you have to learn to step into Dementialand instead of fighting it. And in this particular case, Dementialand had some advantages.

Living with dementia is hard work for the individual who has it. You may question others; you may question yourself. You may have debilitating anxiety. Dementia is about complete brain failure. It’s cruel, unrelenting, and terrifying.

This is why when dementia gives us a gift, we take it and run.

How I Got to Dementialand

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I grew up in a nursing home.

My mom was a nursing home activity director, and I spent my time after school and on the weekends in the halls of Bethesda Care Center. I helped with Bingo, pushed people in their wheelchairs to the chapel for church, modeled my back-to-school clothes for a fashion show, and did dance routines for the residents. In some ways, being at the nursing home made me feel like a rock star. I got a lot of attention from the residents. They thought I was the cutest, funniest, and smartest kid they’d ever seen outside of their own grandkids. I relished every bit of positive feedback.

Of course, there were days when we’d pull up at the nursing home and find a gurney on its way out of the facility. A couple of somber men in suits were pushing out a body covered by a white sheet. I’m unsure if this is a fair representation or just my perception, but I would guess that 80% of the time we arrived at the nursing home to find someone had passed away it was storming outside. If we arrived to find a death had occurred, my mom would stop to quietly ask another employee who had passed away. Then she’d let me know. I don’t remember crying, even if it was a resident I really liked, perhaps because it was such an “ordinary” occurrence.

When you walked into the nursing home, there was a large board with each resident’s name and room number. Of course, it changed frequently with admissions, discharges, and deaths, but I took a lot a pride in being able to remember who was in each room even when I was 7 or 8 years old. If a visitor stopped me in the hall to ask if I knew what room Myrtle Smith was in and I didn’t know, I would be really disappointed in myself and study the board a little harder.

I spent time with people who had dementia. I didn’t know the term dementia when I was in elementary school. Now I know that dementia is not a normal part of aging, but at the time I didn’t realize that. I guess I just thought that some people got a little crazier or didn’t make much sense as they got older.

I knew that certain people at the nursing home didn’t realize they were at a nursing home. Some seemed to think they were at a school or a place of business. One woman thought it was an airport and she was trying to find her gate. They often thought I was someone else–many times they thought I was their daughter or granddaughter, but that was okay because it usually meant they were extra nice to me and wanted to spend time with me. I didn’t care if they called me by a different name. I never corrected them. In fact, sometimes I thought people had special nicknames for me. Looking back, those nicknames were probably the names of family and friends with whom they had me confused.

Their dementia was a perfect fit for where I was at developmentally. It allowed them to “play” with me in a way similar to how kids play with other kids. We pretended we were somewhere else–a different time, a different place. It was only years later that I realized I was pretending…I was using my imagination. They were NOT pretending. They were acting on their “reality,” and imagination had nothing to do with it. But it worked.

And it makes sense why it worked. If two kids play together and one pretends that they are cooks in a restaurant, the other kid doesn’t point out that they aren’t really in a restaurant. They jump in and play a role in the restaurant scenario. And that’s how it was when I spent time with residents who had dementia.

As for the woman who couldn’t find her gate at the airport…I noticed employees would tell her that she wasn’t in an airport at all. They’d insist she was in a nursing home, and she’d get mad. I never told her she was in a nursing home. I didn’t correct her because to me it was just all part of the game. And I found the game to be a lot of fun. We’d wander around until I showed her where her gate was. When we found it, she was so excited and grateful. And I felt like I’d won the game.

I had favorite residents, of course. A never-married woman who lived to be over 100 and could play the piano even though she couldn’t see a thing. A lady who had a tracheostomy but had crocheted colorful necklaces with patches to cover the hole in her neck. An old farmer never seen without his green John Deere hat. A woman who had a poster of a beautiful gymnast over her sterile nursing home bed. I found out that the gymnast was her 16-year-old granddaughter who had been killed by a drunk driver. I was fascinated by the poster. But these were my friends. They were always excited to see me and never failed to make me feel good about myself. It was more than I could say about the kids at school.

Many of my nursing home friends had colostomy bags and catheters. I knew quite a few wore adult diapers. Several were on oxygen. You might think that some of these things would be gross or scary to a kid, but they weren’t. I was exposed to them so early in life that it didn’t occur to me that I should be frightened or unnerved. And, so many people had them that they didn’t even register to me. If I noticed colostomy or catheter bags, it was often just to appreciate the bright covers that were knitted for them. I don’t think I knew the words colostomy and catheter, but I’d say something like “Ohhhh….I love your pouch, Elsie!”

Every kids grows up in a different environment. The nursing home was a big part of my environment. When people ask me why I became a gerontologist, I always start by telling them I was a “nursing home brat.” But I never intended to be a gerontologist and it was never part of my master plan. (For the record, I don’t believe in master plans, at least master plans that you make regarding your career when you are 18 years old.)

But there’s something about the field of aging that drew me in. I’ve told my college students that a great strategy for being successful in your career is to find something that other people find repulsive–but you find interesting–and throw yourself into it completely. I hate that many people find aging repulsive, but it’s undeniable. I would love to make a short video of the range of disgusted and confused faces I get when I explain that I actually ENJOY working with older people (especially those with dementia) and am FASCINATED by the process of how we age.

So here I am…a nursing home brat all grown up. I have a PhD in Human Development and Family Studies from Iowa State University. I’m a faculty member at university, where I get to oversee the Family Services and Gerontology program. I do research on psychosocial aspects and family knowledge of Alzheimer’s and related dementias, as well as how students choose careers in aging-related fields. I teach courses like Psych of Aging; Families and Aging; and Families, Alzheimer’s, & Related Dementia. I am fortunate to do public speaking on topics like dementia and caregiving, and I also do a program called Memory Trunks that allows me to visit with people who have Alzheimer’s and related dementias in settings like adult day services, nursing homes, assisted livings, and memory care units.

But here’s the thing…when I walk into a nursing home to work with people who have dementia, none of my credentials matter. The residents could not care less about my doctoral degree. It’s just like when I was a kid hanging out at the nursing home after school. All people with dementia want is for me to step into their world, listen to them, and help them find their gate. My goal is to let go of every bit of “adult” I have in me and relate to individuals with dementia in the same way I did when I was six years old.