Category Archives: aging

Shattered iPods in Dementialand

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The other day I was getting on the treadmill when I dropped my iPod. It landed precisely on its screen. And, yep, the screen shattered.

It still works. Except if I want to adjust the volume. I’m still deciding how important that is.

My husband, Bill, calls me the Osama bin Laden of electronics. It’s fair (although he recently left a FitBit out in the snow for a week).

This is the third iPod I’ve dropped and broke in the past couple years. And I put one pair of headphones through the washer and dryer on Thanksgiving. Bill bought me a new pair for Christmas. I washed those a few days after the New Year. Miracle of miracles, those still work.

If I continue my electronic terrorist ways and happen to develop dementia, Bill might be in trouble. Because if I don’t remember breaking electronics, I will likely blame him.

Think about it. If I break my iPod and I don’t remember breaking it a couple of hours later, I will see a busted iPod and assume the only other person in our house broke it. Based on my reality, that’s a logical explanation.

Sometimes people with dementia become paranoid and accusatory. It’s frustrating, of course, but it makes total and complete sense.

A man with dementia can’t find his tools in the garage. He may have moved them a few weeks back, but he doesn’t remember that. So he thinks the neighbor stole them. (I cannot even tell you how many times I’ve heard a story about a guy with dementia who thinks the neighbor guy is taking his tools. Sometimes I have to wonder if there is really is a jerk going around northeast Iowa stealing tools from men with dementia.)

A woman gets a call from her doctor’s office to remind her of her appointment tomorrow. She doesn’t remember making the appointment. So she calls her daughter because her daughter must have made the appointment without asking her first. And she doesn’t think she needs to see a doctor in the first place.

People with dementia work within their own realities. For the record, so do people who don’t have dementia. But when the person with dementia and the caregiver live in different realities, it’s tough.

Caregivers tell me stories like:

“My husband thinks I mess up the TV by hitting all the wrong buttons on the remote. But he does it.”

“Mom leaves the oven on all the time. When she notices it’s on, she calls me and yells at me because she thinks I left the oven on when I was at her house.”

If you are a loved one of someone with dementia, what do you do when you get accused of something you didn’t do?

You step into their reality–which means you apologize. If you have a loved one who has short term memory problems that lead to accusations, you are gonna be saying “I’m sorry” a lot.

And, for most of us, that’s really hard. It’s difficult enough to apologize when you’re wrong. And now you’ve gotta do it when you’re not wrong.

And after you say, “I’m sorry about that,” you focus on modifying the environment. Can you change the set-up of the remote or TV so it’s harder to screw up? Can you unplug the oven or even take it out of the kitchen so Mom doesn’t leave it on?

So practice this line: “I’m sorry about that. Let’s see what we can do to fix it.”

Did you break it, take it, or mess it up? Nope. And it doesn’t matter.

Welcome to Dementialand.

Yogis in Dementialand

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Come to hot yoga, they said. It’ll be fun, they said.

And I can’t lie. It is fun–in a sort of brutal way that leaves me dripping wet with mascara running down my cheeks.

Yoga isn’t foreign to me. I’m a certified fitness instructor, and I used to teach some yoga myself. But hot yoga just seems different…intimidating…and really, really hot. Scorching.

The instructor preaches a lot of the same things I preach in Dementialand.

“Let go of your expectations. Stay in the moment,” she says. “Focus on the present without looking forward or back. Appreciate being in the here and now.”

I am ridiculously bad at following these instructions. I continue to think about all the emails I have to send when I get home and what TV shows are waiting for me on our TiVo. I wonder if the soup we made over the weekend is still edible.

“No comparisons,” she reminds us. “Don’t compare yourself to the person in front of you, behind you, to your left, or to your right.”

As she refers to each person around me, I look at them with the sole purpose of comparison. I am definitely the oldest person in my immediate vicinity. The joys of living in a college town.

“And don’t compare what you can do today to what you could do yesterday,” she says. This goes against other things I’ve been told in various areas of my life. Isn’t comparing the “you of yesterday” to the “you of today” the basis for personal growth and improvement? How do you have goals if you don’t look forward and back? I’m not all that philosophical though. I’m just hoping maybe if I do this a few times a week my upper body will be more toned.

Hot yoga is tough. As I enter what I consider to be the stage immediately before one goes into extreme heat exhaustion, the instructions seem to get more cryptic.

“Step your right foot between your hands and look over your left shoulder as you press the top of the left foot to the map,” she says. Left-right-right-WHAT? I need references to one body part at a time. I look at the girl in front of me and think she’s doing it wrong. Then I realize I’m doing it wrong. Or maybe I’m right and she’s wrong after all.

I can’t say I hate it. It’s challenging, and I eventually buy a membership to the hot yoga studio. But I can’t help but think that Yogaland is a little bit like Dementialand.

In Dementialand, we tell you to let go of expectations. We tell you to live in the moment. We tell you to stop comparing yourself. That’s what you have to do to get the most out of life with dementia. It’s also what you need to do to get the best out of hot yoga, but I really wouldn’t know. I’m too busy thinking about what I have to do and comparing myself to others. If I ever enter Dementialand full-time, I hope I can do better at following instructions.

A few weeks back I talked to a woman in the early stages of Alzheimer’s. Although still functioning at a really high level, she was depressed. Throughout her life, she was fantastic at designing and sewing clothes. She could still do simple patterns, but her work paled in comparison to what she could do a few years back. As someone who can’t sew, I was still impressed with her projects. I told her it was 100 times better than anything I could do. Probably the wrong thing to say.

“So I’m better at sewing than someone who has never sewn. Great,” she said sarcastically. Obviously, attempting to get her to compare her work to my (lack of) work was not going to make her feel better. She was set on comparing her current work to what she used to be able to do.

I tried again. I tried to tell her to focus on the joy of sewing and not the outcome. She told me that I really had no idea how great she used to be at sewing. She even made wedding dresses. She couldn’t do stuff like that anymore.

“My whole life people have told me to work hard and get better at things. Now everyone is telling me to let go of that and be okay with being bad at stuff I used to be good at it. How do I flip that switch?” she asked. I really had no idea.

What I didn’t tell her was that there may come a point when she can enjoy sewing again. Why? Because she will likely forget that she used to be an all-star at sewing. There will likely come a point when she has no memory of making wedding dresses for friends and family.  I don’t know whether to hope that comes soon for her or not.

Avoiding Dementialand

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I hadn’t been volunteering for hospice too long when I was asked to stay with Isabel (not her real name) on Sunday mornings. Her family would be at church, and she couldn’t be home alone. Her daughter and son-in-law would be fine with staying home from church, but Isabel would have none of it. So I would come on Sunday mornings.

I was in my mid-20s and in grad school. I was still a bit unsure if I really had the skills to do this hospice thing. I worried a lot about saying the wrong thing. (Side note: I eventually overcame this fear by acknowledging that I would say the wrong thing from time to time, and that’s okay.)

I showed up to find a tiny lady in her early 80’s who was in congestive heart failure. Isabel put me at ease immediately. She was on oxygen and scooted around with a walker. I worried about her tripping over the oxygen line but tried not to hover. She tired easily but somehow had a positive energy about her. She didn’t have dementia. In fact, when I arrived she was watching Suze Orman and launched into an insightful lecture about how women should take responsibility for their own finances.

She asked if I was married. When I said no, she told me that I should not wait until I got married to start making sound financial decisions. I felt like I should be taking notes. I liked her immediately.

Isabel told me in the first five minute of our visit that she was ready to leave this earth at any point. She said she would miss her family but “had her bags packed.”

One thing about volunteering for hospice that surprised me was the ease at which hospice patients jump from talking about the mundane (the puzzle on Wheel of Fortune, toilet paper brands, whether they like asparagus) to the meaningful (how long they had to live, what happens after death, whether they’ll ever see snow again) and right back. Isabel was a classic example. One minute she was telling me she liked my shoes and the next minute she was talking about how she wasn’t scared of death. And then back to Suze Orman. She really liked Suze Orman’s haircut.

But our conversation kept coming back to how lucky she was. She couldn’t help but tell me how fortunate and happy she was that she didn’t have Alzheimer’s. She had seen her mother and her sister die from it, and all she ever wished for was to not have Alzheimer’s.

As she sat in her recliner with her oxygen, she told me that when she entered hospice care she had a realization that it was congestive heart failure that would kill her–before Alzheimer’s would have a chance. And she kept coming back to this point….she was incredibly grateful she would not have Alzheimer’s.

She also told me that for many years she had been a part of a bridge club. She explained how horrifying it was to watch many of her friends suddenly make “dumb” plays. She said that’s how they knew someone had Alzheimer’s. They’d start playing “dumb cards.” Finally, enough of the members had dementia that the club folded.

I would not have expected anyone to have such relief at a terminal congestive heart failure diagnosis. And maybe relief isn’t the right word. It was almost as if she felt entitled to taunt Alzheimer’s like “You didn’t get me!” and then stick out her tongue at the disease. Maybe even throwing in a “nanny nanny boo boo” for good measure. And, after watching the disease turn her mother and sister into what she referred to as “shells,” she had every right to feel that way. She had avoided Dementialand. Isabel 1; Alzheimer’s 0.

But her happy realization that she had avoided Alzheimer’s made me realize that for many years she likely lived in fear of it. She had probably been terrified for decades. I hate that Alzheimer’s does this to people. It makes older people panic when they lose the remote or mix up their kids’ names. It makes them anxious when they can’t find their car in the mall parking lot.

I appreciate that Alzheimer’s disease is getting increased attention in TV and the movies (e.g., Grey’s Anatomy, The Notebook, Still Alice). I can’t help but say I almost always have a gripe about how the disease is portrayed, but still it is being portrayed, and that’s something. All of the increased awareness is fantastic, but it does also increase anxiety among people as they get older. Alzheimer’s is scary for the people who have it, but also for the people who don’t.

The following Saturday night I got a phone call. It was Isabel’s daughter. Isabel had passed away the day before. I was disappointed because I wouldn’t get to watch Suze Orman with her in the morning, but I knew Isabel was ready to go. Her daughter told me that her entire family had been with her when she passed, and her final journey (as her daughter called it) was beautiful.

A few weeks later, I put an offer on a condo. I decided that Isabel was right. I shouldn’t wait to get married to start making good financial decisions, and there was no reason to keep paying rent.

Inappropriate Tales From Dementialand

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“We knew something was up when Mom told this weird story about Dad’s penis at a party,” a woman told me.

Oh, boy.

And it wasn’t just any party. It was a party with friends from church.

And this wasn’t a woman who was known for disclosing inappropriate details about her life or her family’s lives. In fact, she was a private person who rarely talked at parties. She wasn’t known for talking about her husband’s penis in public, particularly when her pastor was present.

Her family was horrified. And embarrassed.

There had been some other signs that something was just off.

She had been at the grocery store and spotted an old friend she hadn’t seen for years.

“Wow! I barely recognized you because you put on so much weight!” she exclaimed.

Her husband was mortified. It was completely out of character…and completely embarrassing.

At home, she stopped shutting the bathroom door–even when they had company. She sometimes walked around the house without a shirt on. When her husband told her to put a shirt on because some friends might be stopping by, she refused.

Her husband made excuses for why they couldn’t participate in social events. He didn’t know what was wrong with her, and he didn’t know what to say when she did inappropriate stuff. He got sick of being embarrassed so they stayed home.

After a couple years, she was diagnosed with Frontotemporal dementia. She was in her mid-50’s at diagnosis.

Now her two daughters had come to one of my community presentations. As we discussed their mom’s symptoms, they had a question I really couldn’t answer.

“How do we stop Dad from being so embarrassed?” they asked. He didn’t want to take her to the store, to social gatherings, to the movies…he had even suggested cancelling family Christmas because he worried she’d say something inappropriate to their grandkids.

I have a stock answer about accepting the changes dementia brings and not being embarrassed that our loved ones are impacted by a disease.

But when your wife is telling stories about your penis and pointing out how much weight people have gained, none of this advice is helpful. It can be embarrassing.

When people approach more advanced levels of dementia, they may live in nursing homes or memory care units. They might need 24/7 care. And it may be apparent upon first glance that something is not quite right.

But most (yes, most) people with dementia do not live in institutions. They live in the community with family or even alone. They may be living with only one foot in Dementialand. They may teeter tot between Dementialand and the reality that the rest of us know.

When these people say inappropriate things at parties and in the grocery store, we may not identify them as a people with dementia. We may just think they are rude and weird. And family members and caregivers struggle with how to negotiate these situations.

There are some strategies I suggest. For instance, a man I knew whose wife had Alzheimer’s carried slips of paper that said in handwritten letters, “I apologize if my wife has inconvenienced you. She has Alzheimer’s. Have a great day and God Bless!” (For the record, that’s not exactly the wording I might recommend, but I appreciate the idea.) A quick email before a social gathering encouraging people to “roll with the punches” can work in some situations.

But how can we keep Dad from being embarrassed when Mom is talking about his penis at a party? I’ve got nothing.

 

 

 

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

aging, alzheimer's, dementia,

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.