What People in Dementia Say…and Don’t Say

dementia

My path has taken me to quite a few memory care communities. People with advanced dementia have made all sorts of comments to me.

About once a month, I am asked when my baby is due—although I’ve never been pregnant. Ever.

I’ve been told I have the nose of a beautiful Jewish woman.

Someone once said, “You look just like my daughter. She’s a horrible bitch who never visits me.”

A while back someone seemed to have me mixed up with Hillary Clinton. I think this was a result of confusion between a TV news story in an adjacent room and real life. It’s not like I was wearing a power pantsuit.

A guy at a community I visit once a month has told me that either I’m really busy or try to give the message I’m really busy. He knows this because I usually wear my hair pulled back into a ponytail.

Sometimes people with dementia try to guess my age. When they say 50, I don’t take it personally. After all, they might have poor vision as well as compromised judgment. However, I forget about that poor vision and compromised judgement when they guess I’m 25.

This summer, a woman with dementia looked me up and down before saying, “Look at that thing. It’s so pretty.” I lived on that compliment for a week.

Once a lady with Lewy Body dementia was convinced I was sent by the devil, and she insisted that the staff remove me before I burned down the building. She had tears streaming down her face. I can still picture her shaking in terror…

I have emotional reactions—positive and negative–to what people with dementia say. However, lately I have been more in tune to what people with dementia can’t say.

As dementia progresses, people lose their verbal skills. To me, this is one of the cruelest parts of the journey. The thought of being unable to express myself verbally terrifies me.

I see people with dementia crying, and they are unable to tell us why. They might be in pain. We can’t determine where the pain is occurring and what’s causing it. They might be scared. We don’t know what’s scaring them.

Although connecting with someone who can’t speak can be challenging and time-consuming, that connection is incredibly rewarding when it occurs. Sometimes it occurs through touch. Or through a smile. Sometimes it’s music that helps us reach an individual who can’t speak. When we reach them…it’s something. When we are able to decipher a message that comes without words, it feels good.

A woman in a wheelchair once reached out to me as I passed her in a nursing home corridor. At first I thought she was trying to strike me, and then I thought she needed something. I asked her if she wanted me to push her down the hall. She grunted in frustration and reached out to me again. This time she grabbed onto my dress and tugged on it.

I asked her if she wanted me to get a nurse. She stared at me, obviously frustrated with my lack of understanding. She grabbed my dress again. This time she was almost petting the material like it was a cat.

“Do you like my dress?” I asked.

She broke out in a wide grin and nodded. That was it. She needed to tell me that she liked my dress. I immediately liked any woman who would go through this much frustration just to compliment another woman on her clothing.

I told her my “secret.” It is a dress from Land’s End, and I actually have at least seven of the same dress in different colors and patterns. (If you work with me, you’ve probably noticed this…I’ve no shame about it.) I told her that I had finally found a work-appropriate dress that I didn’t have to iron, so I was going to get maximum mileage out of it.

She gave me a huge smile. She understood.

As I walked away, I felt like a million bucks. It took a little extra time on my part, but her compliment was worth it. She had made my day. I went home and ordered one more version of the dress from Land’s End. This time it was in red.

A See You Later From Dementialand

dementia

This is my last Dementialand blog post until the end of the summer.

I’ve decided to invest the hour or two I spend each week writing in something else of value–like drinking wine on our deck, trying to keep my hanging flower baskets alive for the first summer ever, and spending time with our ridiculously old dog Karl (who is likely on earth for his final summer, although I’ve said this the last four summers).

I made this decision on Thursday as I was listening to a “Happier with Gretchen Rubin” podcast on Designing Your Summer as I drove home work meetings in Lake of the Ozarks. Although “Happier with Gretchen Rubin” sounds pretty cheesy, I’ve actually picked up a few habits that have made me subtly and slightly happier.

Anyway, Rubin suggests designing your summer to incorporate some fresh activities and new routines. Part of my plan is to put the blog on hiatus. I enjoy writing it too much to let it go forever, but I do feel like I’ll benefit from a break in the routine of writing a post every week.

And the next time I sit on the deck for an hour doing nothing in the middle of an afternoon, I won’t feel guilty. I’ll remind myself that I intentionally traded in my writing time (temporarily) for exactly that.

 

Mole Checks and Mammograms in Dementialand

alzheimer's, caregiver, caregiving

“I get all these cards for her,” an older guy in jeans and a Chicago Bears jersey tells me after a community presentation on dementia. “And I don’t know what to do about them.”

At first I think he’s talking about greeting cards, but he’s not. He’s talking about reminder cards from various health care providers that are sent to prompt his wife, who now lives with Alzheimer’s in a nursing home, to make appointments.

“The dentist. The eye doctor. Now she’s due for a mammogram,” he tells me. “I dread taking her. She doesn’t always know what’s going on and then she starts crying.”

I’m not sure exactly what to tell him. I ask some questions about his wife. I ask about her general health. I ask if she is aware of her surroundings. I ask if he has anyone to help him make decisions.

I learn that she is in her early 70’s. She’s been living at the nursing home for a few months. She’s becoming increasingly frail. She’s fallen several times, so she now uses a wheelchair if she has to take more than a dozen or so steps. She knows she is at a nursing home, and she seems to know who her husband is—although she doesn’t remember his name and refers to him as “that nice man” to the nursing staff from time to time. They have two grown daughters who live in another state. The man mentioned to the daughters that he might not take their mother to get a mammogram, and they strongly objected, accusing him of “giving up” on her.

“I still love her, and I don’t want anyone to think I’m quitting on her. Til death do us part,” he says.

A few months before, she injured her shoulder and had an MRI. The doctor seemed to think this was a necessary rather than optional procedure, so her husband went along with it. To say the MRI was anxiety-provoking for the woman would be an understatement. She had a meltdown during the MRI. The doctor then seemed angry that the man had not warned him that the test would be problematic.

“The doctor knew she had Alzheimer’s,” he tells me. “Shouldn’t he have realized she wasn’t a great candidate for an MRI?”

I know it’s a rhetorical question, but I answer anyway.

“Yeah, you’d think it might have crossed his mind,” I say. However, I know this scenario isn’t uncommon. Doctors often need to be reminded that patients with dementia might not tolerate tests well, particularly if those tests involve remaining motionless or any type of confinement.

He tells me that his wife has been religious about getting yearly screenings from a dermatologist after having a few cancerous moles removed over a decade ago. He knows it’s time to schedule that appointment, but he’s not sure how well she will do with taking off her clothes for someone she will likely perceive as a stranger.

“I wouldn’t take her to that,” I blurt out.

I immediately regret saying this because whether or not I would take her is not relevant. It’s his call. She’s not my wife. I don’t know the first thing about this situation. I met him five minutes ago and have never met his wife.

“So it’s okay to not take her?” he asks.

Maybe he’s not looking for someone to tell him whether or not he should take her. Perhaps he’s looking for someone to give him permission to make a decision. Maybe I am that someone.

I tell him he can take her or not take her to whatever appointments he chooses based on what he sees as being in her best interest. As we chat more, I understand that he has a fear of being judged. He worries about being judged by his daughters, by their friends, by the nursing home staff, by doctors.

“You came up to talk to me about this,” I point out. “If you were comfortable taking her to all of these appointments, you wouldn’t have come up to talk to me.”

He nods.

“I feel like you just need someone to give you permission to make the call, especially if that call is to tear up those reminder cards and throw them in the trash,” I continue. “You know it’s your call, right?”

He nods again.

He prods me a little bit to see if he can get me to tell him which appointments she should keep.

“So no to the dermatologist. What about the mammogram?” he asks.

I bite my lip. I tell him it’s not my call. I tell him I shouldn’t have told him that I wouldn’t take her to the dermatologist. I remind him that I’m not a medical doctor, and I’m not familiar with their situation.

“But if it were your mom? Or your grandma? Or your sister?” he says. “The mammogram?”

Ugh. He’s persistent.

“Probably no mammogram,” I finally say. I say this mostly because I know from this discussion that he thinks the mammogram is a bad idea. He just needs someone else to say it.

At this point, something happens that has never happened in my public speaking and community outreach experiences. He reaches in his wallet and pulls out a $5 bill. He tries to hand it to me. I’m confused about his intention as he puts it in front of my face.

“Take this,” he says.  “It’s a tip.”

I tell him that I don’t take tips. (I act like this is a long-standing policy when in fact it’s a brand new policy. I’ve never had a policy on tips before this moment because I’ve never been offered one. To be fair, I have often accepted food after speaking–e.g. chocolates, banana bread, cupcakes, other miscellaneous baked goods.)

My purse is on the floor beside me. He unzips it and stuffs in the $5. I protest, but he walks out the door and doesn’t look back.

I could tell you that I did something noble like donated that $5 to the Alzheimer’s Association or used it to buy a needy child a toy, but I didn’t.

I felt so uncomfortable with that $5 in my purse that I had to spend it right away. On the way home, I stopped to buy a Diet Mountain Dew, a string cheese, and a bag of pretzels.

 

 

Mirrors, Strangers, and Friends in Dementialand

alzheimer's, dementia, , ,

When I was a kid, my mom worked at a nursing home. I remember one particular incident like it was yesterday–although it was (gasp) about 30 years ago.

My mom, a resident, and I were walking down a hallway. There was an expansive mirror on one side of the hallway. The resident had taken a fall a few days before. The fall had left her with nasty black eye and bruising all over one side of her face.

The resident caught a glimpse of herself in the mirror and froze. I thought she was about to make a comment about how awful her face looked, but she didn’t. She didn’t even know it was her face.

“What the hell happened to that old bag?” she exclaimed.

I remember being fascinated with how this person could look in a mirror at herself and think it was someone else. As I sit here thirty years later, I still find this one of the saddest, scariest, and most interesting things about dementia. Seeing a person look in the mirror and not recognize themselves always takes my breath away.

I know a man who accused his wife of cheating because this old guy showed up in their bedroom at night. I recently talked to the daughter of a man who refuses to take showers because he is sick of a creepy dude watching him. A woman at a local nursing home thinks that the woman in the mirror is actually the woman in the next room, and she keeps telling that woman to find a hobby instead of sitting there all day. And I know multiple individuals with dementia who have told family members that people are breaking into their homes. A few have even called the police.

A woman in a support group told me that one day she walked into the bathroom to see her mother washing her face–except it was the face in the mirror. She was getting angry that the woman wouldn’t stay still.

Mirrors are confusing and often agitating for people with dementia. There’s an easy solution, of course. You can take them down. In a family home, curtain rods can be placed over mirrors so that they have adjustable curtains or drapes.

I do know several people with dementia who have made friends with the figure in the mirror. One man chats away to his buddy as he brushes his teeth and bathes. He seems to think it’s someone he served with when he was in the Navy. Another women I know is convinced it is her mother who stares back at her, and she finds this comforting.

The grandmother of one of my friends used her friend in the mirror to reinforce her own opinions. My friend would walk into the nursing home room, and her grandma would say something like “Your shirt is too low cut. You look like a hussy.” Then her grandma would motion to her friend in the mirror and say, “And she agrees with me.”

Fortunately, her family decided to accept the friend in the mirror as part of their grandma’s reality rather than argue with her perception. My friend says she was outvoted on everything–because of that dang lady in the mirror who seemed to agree with grandma on fashion, politics, religion, and TV shows. (The lady in the mirror always wanted to watch Divorce Court, which happened to be grandma’s favorite show as well. What a coincidence.)

The young adult son of a woman with Alzheimer’s told me that he was somewhat prepared for the day that his mother didn’t recognize them. It wasn’t easy, but he saw it coming. He expected there’d be a moment when his mother would look at him blankly and not recall who he was. All the brochures and website had warned him.

He told me was unprepared for the day their mom did not recognize herself. She looked in a mirror and asked about the person looking back at her.

Her son said, “That’s my beautiful mom.”

She responded, “Oh, I don’t know your mom, honey.”

How strange is a disease that it can make you forget yourself?

 

 

Mothers’ Day in Dementialand (aka What You Do Every Day Matters More Than What You Do Once in a While)

alzheimers, caregiver, caregiving, dementia, dementialand

Last week I ran into an acquaintance, Cindy, at the rec center where I teach fitness classes. Cindy is recently retired and in her 60’s. In the summer, she’s an avid outdoor cyclist. When it’s cold or rainy, she comes inside the gym to ride a spin bike.

Her mom, Edna, is in the end stage of Alzheimer’s and resides in a local nursing home. Since her retirement, Cindy typically stops in at the nursing home at least once a day. When the weather allows, she rides her bike.

When I see Cindy, I usually ask how Edna is doing. I feel like Cindy is grateful for the question but struggles to answer it. She feels like Edna is getting good care but at this point doesn’t have much of a quality of life.

“Mom had several good years after her diagnosis,” Cindy has said in the past. “But those good years are over.”

Now Edna stays in bed most of the day. Sometimes the staff puts her in a wheelchair, but she slumps over. She doesn’t speak. She hasn’t recognized anyone for a while now. It’s a struggle to get her to eat. She’s incontinent. She has what Cindy refers to as “glaze eyes.” It’s like she’s looking through people rather than at them. Her immune system doesn’t function well (yes, this is a symptom of end stage Alzheimer’s) so she’s constantly battling urinary tract infections and infected pressure sores.

When I saw Cindy last week at the rec center, she blurted out, “I think I’m a bad person. I’m not going to visit Mom on Mothers’ Day.”

Cindy told me that her own daughter and granddaughters live about four hours away. She’d be headed to visit them on Mothers’ Day, and there just wouldn’t be time to visit Edna.

Cindy had mentioned to a few people that she wouldn’t be going to see her mother at the nursing home on Mothers’ Day. They asked if Edna would have other visitors. Nope. She would have no visitors. Cindy felt like these people responded as if she was a horrible monster.

“So I’m leaving my poor mom alone at the nursing home on Mothers’ Day,” she said as her eyes welled up with tears.

It didn’t matter that Edna would not know it was Mothers’ Day or even that she was a mother. It didn’t matter that Edna wouldn’t acknowledge Cindy when she showed up or that Edna wasn’t capable of having a conversation. It didn’t matter than Edna might even be asleep for the entire time her daughter was there.

Not visiting your mother at the nursing home on Mothers’ Day still makes you feel like a loser.

And Cindy…is anything but a loser as a daughter. She invited Edna to move in with her and her own husband after diagnosis. When Edna’s care become too much for them, she researched nursing homes and found the absolute best option for care. It was a rare day when she didn’t stop by at least once, even after her mother stopped recognizing her. She made a special effort to thank the staff when they went out of their way to care for Edna. She even took her mom’s laundry home once a week and did it herself.

As Cindy was telling me about how she made the difficult decision to leave town to see her daughter and granddaughter for Mothers’ Day, my mind wandered to the people I’ve met who do visit their moms with dementia at the nursing home on Mothers’ Day–but rarely on other days. They go on Mothers’ Day because it’s Mothers’ Day and that’s what you do. Yet Mothers’ Day is only one day. Where are they the rest of the time?

I can’t be a jerk to my mom 364 days a year and make up for it by taking her out for an expensive Mothers’ Day brunch and buying her flowers. It doesn’t work that way for any of us, whether our mothers are well or sick.

I’m not saying Mothers’ Day isn’t important. I am saying that what you do most days is more important than what you do one day, even if that day has a special label.

One of my favorite authors is Gretchen Rubin, who wrote The Happiness Project, a book that changed the way I look at habits and happiness. A quote from her book that stuck with me is: What you do every day matters more than what you do once in a while.

It’s a pretty simple concept, but it’s helped me to change my life in subtle but meaningful ways. I have to create a daily life that reflects my goals and values. For instance, I have to be kind to the people I come in contact with each day to be a kind person. I can’t just go on a mission trip to a third world country once a year and call it good. My priorities have to be shown in my actions each day, not just once in a while, or they really aren’t my priorities.

I think about this in terms of marriage. If you’re not nice to your spouse every day, you can’t save your marriage by going on a romantic trip once in a while.

I think about it in terms of health and fitness. It’s better to consistently incorporate more walking into your daily life than go for an occasional run.

Your daily routine matters. Your life is made up of your daily routines. Cindy’s routine tells me that her mother is a priority to her…that she’s a caring person…that she’s doing the best she can.

I fumbled to explain my thinking to Cindy.

Finally, I asked her what advice she would give her daughter if she were in a similar situation on Mothers’ Day.

“Oh, I’d be angry if my daughter chose sitting in a boring nursing home on Mothers’ Day when she could be playing with her beautiful granddaughters,” she said.

As we parted ways, I said awkwardly, “Have a happy Mothers’ Day. You’re not a bad person!” (The term awkward is an understatement in this case.)

I have no doubt that Cindy was at the nursing home Saturday. I have no doubt she will be there today.

I hope she has found peace with not being there yesterday.

 

 

Will Ferrell, Ronald Reagan, and Dementialand

alzheimer's, dementia, Will Ferrell

A few days ago, I read a plethora of news stories about how Will Ferrell was planning to play an Alzheimer’s-striken Ronald Reagan in a comedy.

Yeah, a comedy. I had to read this in several sources before I believed the news was legitimate. It just seemed like a strange project. I can’t even say I was offended when I first read about this. I was just…confused.

Reagan’s daughter seemed to learn this news at the same time as the rest of the world. She wasn’t pleased. I can’t blame her.

She penned a letter to Ferrell:

http://booksbypattidavis.com/an-open-letter-to-will-ferrell/#more-1732

Ferrell pulled out of the project, and his camp downplayed his interest in participating in the movie. I’ve read news reports that he had only read a script to see if he might be interested. However, other reports indicate he was considering producing the movie.

I did happen to read about a few samples scenes from the script. One scene has a Reagan referring to a wardrobe assistant named Libby, saying “I want Libby out! No more Libby!” In the movie, this would lead to a confused Reagan bombing Libya.

This got me thinking about a few things that annoy me… I frequently hear people joking about having OCD (obsessive compulsive disorder)–when they don’t have OCD. Someone on Facebook mentions that they are staying home to clean on Friday night because they have OCD. Or they say that they like to see the lines on the carpet after they vacuum because they have OCD. But they do not have OCD. It seems harmless enough…unless you think about the people whose lives are debilitated because they actually do have diagnosed and severe OCD. Please don’t say you have OCD because you like to be organized and enjoy having a clean house. It’s not funny or cute. OCD is an illness. If you don’t have it, be grateful.

I know someone who always says she has ADHD (attention deficit hyperactivity disorder). She says makes comments about her “ADHD” on social media. She talks about how she can’t stay on the treadmill more than 30 miles–because she has ADHD. She gets bored in yoga–because she has ADHD. She can’t eat the same thing for lunch two days in a row–because she has ADHD. But she doesn’t have ADHD. None of these “symptoms” truly disrupt her life, and she’s never been diagnosed with ADHD. I would expect that someone who actually had ADHD might be offended by her disregard of what ADHD is and the struggles it causes.

I find it interesting that people always make Alzheimer’s jokes around me. If they can’t remember something, they say they must have Alzheimer’s, and then they laugh. (It’s not even a creative joke, people. I hear it all the time. Come up with something better.)

Let me put this in a different context…

What if I had a bad cough and starting telling people I had cystic fibrosis–and expecting them to think I was cute and funny?

What if I had a pain in my stomach and continually made jokes about having cancer? What if I did this around people who actually had cancer or people who had lost loved ones to cancer?

What if I had a tension headache and kept referring to it on Facebook as “my brain tumor” even though I had not seen a doctor and there had been no mention of a tumor?

To be fair, I’ve been known to refer to humor as my religion. I can find humor in almost anything. Without this skill, I don’t know if I’d survive in this world.

But finding humor in a situation is different than seeing someone else’s life as a comedy. I tell my dementia families that it’s okay to laugh. In fact, it’s good to laugh. They succeed when they find humor in a difficult situation. But that doesn’t make dementia a comedy.

 

 

 

 

 

Knowing Better and Doing Better in Dementialand

alzheimer's, caregiver, caregiving, dementia, dementialand, hospice, pwd

I am driving a couple hours to southern Iowa to present at a community center. It’s a drive full of soybean fields, cornfields, and an occasional Casey’s Convenience Store. I’m listening to a Spotify playlist including (embarrassingly) artists such as Flo Rida, Salt-N-Pepa, Tracy Chapman, the Jayhawks, and the Jackson 5. There may or may not be one, and only one, Justin Bieber song.

I’m not sure if there will be fifteen people or a hundred at this deal. I’m not even really sure exactly what I’m going to talk about. I don’t know if most of my audience will have experience with dementia or have shown up because they saw a flyer and didn’t have anything better to do on a Tuesday night.

When I arrive, the woman who invited me to speak gives me a BP gift card and a small loaf of homemade zucchini bread. (I will later eat 3/4 of the bread on the drive home when I realize the Subway in this town closes at 9pm.) About 70 people show up, and they are overly thankful that I’ve made the trip. My audience is seated in folding chairs. I am at a podium on a stage. One woman tells me that her granddaughter was in a dance recital on the very same stage over the weekend. I tell her that’s a hard act to follow.

I give what I call my “Dementia 101” info. Then I do a little role play and demonstration to show how to approach and communicate with people who are in the later stages of dementia. My crowd is fantastic. They laugh at all the appropriate times. No one’s cell phone rings. Sometimes when I do public speaking I feel like I’m on my game (I could also write multiple blog posts about when I’m not on my game), and tonight I’m on my game.

An older woman sitting in the back row asks a lot of questions during my presentation. They’re good questions. They are questions that only someone caring with a loved one who has dementia asks.

How do you know when it’s time to take someone to a nursing home?

What do you do when someone with dementia tries to take their clothes off in public? (When she asks this question, a few people in the front row turn around to look at her.)

Should you take someone off their dementia medication, like Namenda, when they are in the end stages?

What’s the best way to handle it when they don’t know who you are anymore?

How do you feel about feeding tubes when people stop eating at the end of life? (The first words out of my mouth are “Not good.”)

I do my best to address her questions. To be honest, I think I do a pretty good job providing her with some options and ideas that might be effective.

After I get done with my presentation, several people come up front and form a line to chat with me. For experience, I know that listening to these people’s stories will take almost as long as my presentation itself. This is the reason by husband knows to expect me home at 11 when I say I’ll be home by 10.

The woman from the back row is in line. When she gets her chance to talk to me, she has a few more questions. Again, they are good questions. She wants to know what a person should tell their grandchildren about why grandpa doesn’t know who they are. She asks why people with dementia may not be able to sit up straight, why they slump in their wheelchairs, and what you can do to get them to sit up when they won’t. Then she wants to know if people in end stage dementia should just be left alone when they lie with their eyes closed and refuse to open them–or if it’s okay to shake them just a little to get them to open their eyes.

I do my best, but I admit I don’t have all the answers. Maybe I really don’t have any answers, just some thoughts and ideas based on my experiences. She thanks me for making the drive and tells me to watch out for deer on the way home. And then she says something that makes my heart leap to my throat.

“My husband died from Alzheimer’s a few months ago,” she confides. “Now I know all the mistakes I’ve made. I had no idea about all this stuff.”

She says this in a way that is matter-of-fact and not bitter. However, it stings me. I thought I was giving her helpful advice, whereas I was actually unintentionally pointing out her mistakes. She manages a smile and walks away.

I turn my attention to the next person in the line, but something nags at me. A part of me wants to catch the woman as she walks out of the community center. I have no idea what to say when I catch her, and I’m not sure if she’d want to be caught. I let her go.

On the way home, I think about the woman. She’s weighing so heavily on my mind that I don’t think to start my Spotify playlist until half an hour into the drive. My favorite Maya Angelou quote keeps coming to mind:

Do the best you can until you know better. Then when you know better, do better.

It’s something I tell myself a lot when I think about my own professional and personal life. When things go wrong, it’s often because I didn’t have the experience or knowledge to do better. (Of course, there are those times I mess up even though I do know better.) I also use this quote a lot with my college students. You didn’t know better. Now you know better. Don’t screw it up again. 

The reason the quote keeps coming to mind is that, in this particular case, it doesn’t work. The woman doesn’t have another chance. She did the best she could with the knowledge she had. She probably wouldn’t admit it, but she probably did okay. Yet now she has more information….because for better or worse I gave her more information. Now she knows better, but she can’t do better. It’s too late.

If I had known her husband was dead, I might have answered her questions differently. I’m not sure exactly how…but I might have at least changed my delivery even if I didn’t change my content. I wish I had known. There’s no real way I should’ve known, of course, but I wish I had.

I have to wonder if she made the right call by coming to listen to me speak. I’ll probably never know.

Maybe it’s better to think you did your best and not realize there’s more you could have done.

 

 

 

 

 

Why You Shouldn’t Tell People in Dementialand to Calm Down (Oh, and Avoid Telling Other People to Calm Down, Too)

alzheimer's, dementia, dementialand

No one, in the history of the world, ever calmed down because someone else told them to calm down.

Case in point.

A few years ago, I was in the emergency room for kidney stones. As they were admitting me for pain control and eventual surgery, a nurse came in to put an IV in my arm.

Needless to say, it wasn’t one of my best nights. I was rolling around in pain and gripping the sides of the bed. I remember sweating profusely. I had been vomiting and couldn’t stop trembling. I wasn’t sure if they could get the pain under control, so in addition to pain I was dealing with anxiety.

The nurse, yielding a needle, got in my face. With her nose about three inches from mine (at least as my memory serves), she said firmly, “Now just calm down.”

I’m hoping that’s not a line she uses a lot. If it is, I’m surprised a patient in pain hasn’t managed to stick that needle through her forehead yet.

If I hadn’t been such a mess, I would’ve said something like, “Thanks for the tip. I thought I was looking pretty cool by writhing around in pain here, but you’re right. I’m gonna just chill.”

Rather than calming down, as my unhelpful nurse had suggested, I became more anxious.

The more I think about it, the more I realize that this is a natural response to the suggestion of “Just calm down.”

There was the time someone tried to steal $63,o00 from our bank account by, in short, stealing my identity. (Like most people, we don’t have $63,000 to steal, and this actually helped the situation be resolved more quickly in the end.) I got on the phone and called our bank. As I was trying to explain what happened, the bank employee on the other end said, “Okay, now just calm down here.”

As if panic was not a valid response to having your identity and more money that you technically had stolen from you?

I’m not sure she could’ve said anything that frustrated me more.

Why does being told to calm down have the opposite effect?

When we are told to calm down, the other person implies that we don’t have reason to be upset or frustrated. It implies that we are overreacting or that our feelings about a situation don’t matter. It implies that we aren’t being listened to or understood.

Unfortunately, we frequently tell people with dementia to calm down. If you have said this to person with dementia (which I have), I’m gonna go out on a limb and guess it wasn’t an effective strategy. My guess is that they felt like you weren’t listening to them. And you probably weren’t. They likely felt disregarded. And, they didn’t calm down. I’d be willing to bet that they got more anxious. They might have even become aggressive.

A woman at a memory care community in my town was once convinced that there was a bomb under the building. She tried to leave, and she encouraged everyone to come with her. When she realized she couldn’t leave, she freaked out. And that’s a logical reaction to her reality. If I thought there was a bomb under the building I was in and realized there was a code on the door that no one would tell me, I’d freak out as well.

She was told to….just calm down. Imagine yourself in her situation. You have information that you and others in the vicinity are in a dangerous situation. And you are being told to….just calm down.

The woman tried to explain the situation to yet another person, who cut her off dismissively yet again. Finally, she shouted, “If one more person tells me to f***ing calm down, I am going to f***ing slap them!”

I like to promote peace rather than physical violence, but if you work in a memory care community and frequently use the phrase calm down, maybe this wouldn’t be the worst way to learn a lesson.

So what works instead?

I’m not sure it matters if someone has dementia or not. When someone is upset, you take the time to listen to what they are upset about. You don’t dismiss their concerns (even if you don’t share them). You try to see their reality (even if it’s not your own).

Think about it. How do you like people to respond when you are frustrated, sad, anxious, or angry? How do you feel when someone tells you that you need to calm down? And how is that feeling any different if the reality you are upset about is a different reality than the one the others around you are experiencing (and I’m not just referring to dementia here–we all live in different realities)?

Recently I was doing a group discussion with ten individuals who have dementia. In about five seconds, a women went from enjoying a chat with the group to being convinced that no one liked her and everyone was “stabbing her in the back.” Of course, in my reality (which is irrelevant in this situation) her perspective made no sense. No one had said anything negative to her. All of the conversation had been pleasant. How could she be okay with everyone…and then not okay?

As she got up (and I worried she might hit someone), my instinct was to say “Now calm down.” But–keeping in mind that I’m quite ineffective when I use this direction with my husband, my college students, or my friends with dementia–I stopped myself.

“Can we step outside for a second?” I asked her.

She followed me outside the room. It took a minute for her to maneuver with her cane, so I had a moment to think about what direction I wanted to go.

I said, “I want to understand why you’re upset.”

She gave me a long explanation of why she felt alienated by the group. To be honest, I couldn’t follow most of it. I listened anyway. Then she told me someone had kicked her under the table. I had no idea if this was true or not, and I didn’t waste effort trying to figure it out. It made no difference.

“I can understand why you’re upset,” I told her. “Do you want to go back in or would you rather go watch TV in your room? I totally get it if you don’t want to hang out with these people.”

There was a long silence before she said, “I want to go back in. It’s okay.”

I’m not giving myself too much credit here. I don’t want to act like I have all the answers because it’s common for me to have situations like this blow up in my face.

But sometimes the best way to get someone to calm down is to deliberately avoid the words “calm down.”

I’m trying to strike those words from my vocabulary.

 

 

 

 

Jesus, Faith, and Coping in Dementialand

dementia, dementialand, lewy body dementia, nursing home

A woman explained to me that her mother, who has Lewy-Body dementia, had forgotten how much she loved Jesus.

Ella, as I will call her, had always gone to a Baptist church. She wasn’t pushy or overbearing about religion, but it was important to her. She was well-respected at her church for her willingness to prepare food for funerals and help with gardening on the church grounds.

After Ella’s husband died, she relied on her faith and church family even more. When she was diagnosed with Lewy-Body dementia, she told her family that God would get her through that as well….except, as her daughter explained, it didn’t really happen like that.

First, she got in an argument with the pastor of her church. Her daughter wasn’t really sure what the argument was about, but it soured Ella on going to church. A couple of times she went but walked out in the middle of the serm0n muttering to herself. Then she stopped going altogether. People offered to drive her, but she declined. She said she had too much to do around the house.

Her daughter noticed that the “Verse of the Day” calendar that Ella kept in the bathroom had been scribbled on. Ella had crossed out a particular verse and written beside it “No!” in big green letters. Her daughter searched for the significance of why that specific verse was crossed out but came up with nothing. She found other “verses of the day” that had been ripped in half. On one verse, Ella had crossed out “God” and replaced it with “dog.”

The Bible that Ella had kept on her nightstand for years had now been pushed under her bed. When her daughter discovered it, she noticed that it appeared certain pages had been burned with a lighter. After being asked about the Bible, Ella said her daughter “might as well just throw that thing away.” I wondered aloud if Ella had some hallucinations or delusions that might have resulted in her burning her Bible. Her daughter shrugged.

Ella moved to a nursing home and had an opportunity to attend church services every Sunday. However, she had no interest. A pastor from her church (not the same one she argued with) came to visit several times but she had no interest in talking to him. She just sat staring straight ahead. She didn’t even look at him. Eventually the pastor told Ella’s daughter that he would keep Ella on the prayer list but didn’t see a purpose in continuing to visit. A few old church friends came to see and pray with her, and she told her daughter she didn’t want to those “busy bodies” around any more. She was convinced they were badmouthing her to the other members of the church.

“I don’t know if she forgot how important church and faith were to her or is mad at God,” Ella’s daughter told me. “But it breaks my heart that the thing that brought her the most comfort in her life isn’t there for her now when she needs it the most.”

I wasn’t sure what to say. Lewy-Body dementia, like other forms of dementia, makes people apathetic. Things that used to get people excited and engaged lose their impact. Often times, individuals are no longer passionate about what they used to be passionate about. I wish there was some type of exclusion for a person’s faith, spirituality, and religion, but there isn’t. Dementia can take that, too.

David Snowden wrote a book in 2002 called Aging with Grace. It’s about his research on Alzheimer’s disease using Catholic nuns as sample. There is one nun in the book who worries about forgetting God as she develops Alzheimer’s. However, she finds comfort in knowing that God won’t forget her.

I repeated this story to Ella’s daughter, hoping that it would bring her comfort as well. It didn’t.

“But I kinda do feel like God has forgotten her,” she said. “How can God allow her to get a disease that makes her forget Him?”

I didn’t have a good response. And I think that’s okay. I think she just needed a listener–not a religious expert.

This post really isn’t about religion. It’s about dementia.

Here’s my message about dementia today…

Imagine you are fighting one of the greatest battles of your life. You’re facing incredible challenges and struggles. But the coping mechanisms you’ve relied on your whole life aren’t available to you… Maybe that’s your faith. Maybe it’s not. Whatever you used to get through life is–gone. You reach for it, and it’s not there. How do you cope when what you use to cope is no longer an option?

Ella’s daughter and I did figure something out. We found an old CD of hymns and played it for Ella. I can’t say she lit up. She certainly didn’t sing, and she didn’t say much. I don’t even think she smiled. She looked over at the CD player and nodded.

“Should we play hymns again for you, Mom?” Ella’s daughter asked.

Ella responded, “Well, if you like them.”

It was something.

 

 

 

The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)

alzheimer's, caregiver, caregiving, death, dementia, dementialand, dying

When I first started writing this blog about 16 months ago, the only feedback I received was positive. Overwhelmingly and sometimes ridiculously positive. I repeatedly heard that it was smart, insightful, funny, and poignant. At that point, my readership included only my mother, my husband, and about four friends. None of them had a negative word to say unless it was to point out a typo.

My readership has expanded. I have “subscribers.” Sometimes I see that my blog gets shared on Facebook by people I don’t know. Of course, most people who write a blog hope that more than six people read it, so this is a good thing. However, it’s forced me to realize that not everyone always finds my blog smart, insightful, funny, and poignant.

At first, I wasn’t okay with this. People’s criticisms (especially when they are mean rather than constructive) cut me hard. I lost sleep. I was in a foul mood. I spent hours crafting email rebuttals to the emails I received. If you’re wondering what types of critical emails I received, here’s a brief summary (paraphrased) of some readers’ thoughts….

You don’t know anything about dementia unless you care for someone with dementia 24/7. You can’t learn about Alzheimer’s by getting a PhD. You probably have never even provided care for someone with dementia. You act like everyone with dementia is the same when they’re not. You don’t know the difference between the terms Alzheimer’s and dementia (this person was kind enough to send me a Wikipedia link to clarify–ummm–thanks?). You need to write from a Christian perspective. There are diets that cure Alzheimer’s, and you should be writing about that.

I once had a guy email me and insist that the Alzheimer’s Association already had a cure for Alzheimer’s but didn’t want to reveal this because they’d all lose their jobs. He seemed to think I was in on this conspiracy. I was a bit flattered that he’d think I, of all people, would be in on this conspiracy.

There’s a reason I only look in my spam folder about once an month, and it’s not those Nigerian princes whose whole families have died in tragic bus accidents.

Comments like this used to sting, even if they were off-the-wall and ridiculous. I’ve gotten in a few passive-aggressive email and Facebook arguments in an effort to defend myself. In fact, it’s hard for me to revisit these criticisms here without writing a rebuttal to each, but I’m not going to give in to that urge. That’s not what this post is about. (And I must admit writing this blog has really helped me develop thicker skin. Furthermore, I’ve realized that people’s comments are more a reflection of where they are in their journeys with dementia than my work, and I’m not saying that some people have not had valid points.)

This post is actually about the two most common criticisms I get about my blog. And that’s where I will squeeze in that rebuttal.

One of these criticisms, which commonly comes from caregivers, is that I portray dementia in too positive of a light…that I look at this through rose-colored glasses…that I find positivity and humor where there is none. The other criticism, ironically, is that I portray dementia too negatively…that I focus too much on the end and not enough on the years that people with dementia can live purposeful and fulfilling lives.

My hope is that someone who reads my blog regularly (although I don’t expect anyone except my mother and husband has read all 101 posts) would not make either of these claims, but I can understand these criticisms coming from someone who has read a few posts here and there. Sometimes I am more negative, and sometimes I am more positive. That’s a reflection of my recent experiences with dementia and likely a reflection of my mood and other events in my life as well. I have my own ups and downs. Sorry not sorry.

When I started this blog, I didn’t have a master plan. You give me too much credit if you think I set out to portray dementia negatively or positively. There was certainly never an agenda. I set out to share my own insights and experiences. I just desperately hoped I could find something to write about each week and not make a fool of myself. In time, that hope turned into fear that at some point I would not be able to find a way to work “Dementialand” into each and every blog post title. I had a dream one night that I wrote an absolutely brilliant post but never published it because there was no way to incorporate “Dementialand” in the title. I woke up in a cold sweat.

This blog is where I’m at on a particular day. And, although I had no intention of portraying dementia positively or negatively, I’m somewhat glad that I can fall on both ends of the spectrum. In a way, I’m proud that I get criticized for being both overly positive and overly negative.

There’s a risk in shedding a positive light on dementia. The general public doesn’t understand what Alzheimer’s and related dementias do to people. People still think this is just about forgetfulness–telling the same annoying stories repeatedly–having to be reminded to brush your teeth–calling your grandkids by the wrong names. As a society, we need to understand it’s much more. We need to understand that dementia kills people…and not just old people. The risk in minimizing the seriousness of diseases that cause dementia is that this hurts the efforts of those who fundraise to increase support and research.

However, there are people out there diagnosed with Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia, and vascular dementia living quite well. There is something between diagnosis and death. It’s called life. Someone with early-onset Alzheimer’s recently told me that she’s dying from Alzheimer’s and living with Alzheimer’s all at once, but she’s thinking about the living part. She estimates she has one or two “good” years left. She refuses to waste them. As I write this, she’s in Hawaii with her family. She knows it’s probably one of her last vacations, but she’s there now.

Dementia is about death and dying. Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia…all terminal diseases. Dementia kills people, and I can’t apologize for being blunt on that. I give several community presentations on dementia each month, and people are still not getting this. They act offended when I mention that dementia is fatal.

And yet many of my friends with dementia have good lives. They smile. They laugh. They love. They spend time doing things that are meaningful to them. Some people with dementia are happier than some people without dementia. Some people with dementia are happier than…me. I can use the terms hope and dementia in the same sentence.

None of that changes the reality of the struggles and challenges of dementia. None of that changes the need for more funding and research. None of that changes the fact that no one should have to forget their loved ones. And none of that changes the devastation of these diseases.

So before you send me an email about how my blog is too positive or too negative…a couple things. First of all, make sure you’ve read more than one post. And second, know that I’m not trying to convince you of anything. I’m not trying to tell you that dementia is no big deal. I’m not trying to tell you that dementia steals every joy in life upon diagnosis. Neither is true.

Life ain’t a fairytale–whether or not you have dementia. Stuff goes all wrong, but you have to find a way to survive and (when you are able) thrive. It’s not that life is good and then bad and then good again. Life can be good and bad..and funny and sad and poignant and a million other things…all at once.