Being Right, Being Wrong, and Doing Your Best in Dementialand

Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern.

Let me tell you a story. This story does not have prescribed lesson. And I’m not going to tell you who is right and who is wrong—because I really don’t know.

Melissa (not her real name) was a college student in our program several years ago. She was doing a service-learning project at a local memory care community. One of her tasks, as assigned by staff, was to accompany Edie (spoiler alert: also not her real name) to the beauty shop.

Edie was a woman with Alzheimer’s disease. I did not realize it at the time, but her deceased husband had been a wealthy entrepreneur in our community. Throughout her life, she hung out with movers and shakers in town. She and her husband were generous with both their time and money. They were respected and well-connected.

All I knew at the time was that Edie hated going to the beauty shop that was part of her memory care community.

She didn’t understand why this woman she didn’t recognize was messing with her head. She didn’t get why someone was holding a pair scissors (which she perceived as knives) to her head. And she repeatedly told the woman to “F*** off and put down those knives!”

The hairstylist wasn’t offended. Working in this environment meant learning to roll with the punches. The bigger issue was that, despite the hairstylist’s best intentions, Edie would get more and more agitated the longer she sat in the chair. Sometimes she’d curse. Sometimes she’d cry. Occasionally, she would even shake.

And that’s where Melissa came in. She would be responsible for comforting Edie and “managing” her visits to the stylist. It wasn’t just a monthly cut. It was a visit every Friday–sometimes color, sometimes a perm, sometimes a trim. And her family also had her nails done regularly, which was almost as anxiety-provoking. Melissa was a reassuring (if not familiar) face in the midst of a terrifying experience. Even though Edie didn’t seem to remember Melissa, they somehow connected.

After a couple months of this, Melissa showed up in my office. I’ve had some angry students in my office over the past 10 years, but I think she wins the prize for the angriest. Melissa couldn’t understand why Edie’s family was insisting that she spend so much time at the salon when the salon was “hell” for Edie.

I didn’t know either. And, at the time, I was 100% Team Melissa. I could see no excuse for putting Edie through such trauma.

I encouraged Melissa to see if she might be able to talk to Edie’s family. I assumed that if the family understood the extent of how stressed Edie was by getting her hair and nails done, they would forget the whole thing–or at least minimize her visits. Maybe my suggestion that Melissa talk to Edie’s family was a good one…maybe it wasn’t.

Melissa took my advice. She called Edie’s daughter, who explained–not so calmly–that she had promised her mother that she would make sure she would always be “done up” and “looking like herself” for visitors. The daughter also told Melissa that Edie had spent a lot of time maintaining her looks. Her mantra had been “look good, feel good.” Also, she pointed out, Edie may not like the visits to the salon, but she’d be horrified if she looked in the mirror and didn’t look like Edie. That, the daughter said, would throw her into a panic.

In short, Edie’s daughter was not thrilled a college student had called her out on her decision-making.

“You don’t know what this is like, so keep your thoughts to yourself,” the daughter said.

Melissa responded, “And you don’t know what it’s like for her at the salon.”

The daughter made a point to Melissa that she was keeping a promise to her mother, and that this promise was based on her mother’s worry of looking like a “raggedy old woman” in a nursing home. She would never, never look like a “raggedy old woman.”

The conversation escalated into a full-fledged argument. Melissa then left a letter for the daughter in Edie’s room. I don’t know what the letter said, but it did nothing to improve their relations.

Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern.

I wasn’t sure if I should insert myself into the situation. After all, I was Melissa’s supervisor for her project at the memory care community. In the end, I let it play out without my intervention. If I had it to do over again, I might have made a different choice. I could’ve made things better. Of course, there’s a good chance I could’ve made things worse. I mean, I can always make a situation worse.

At the request of Edie’s family, Melissa was told she was no longer going to be attending salon visits with Edie. Devastated at the news, Melissa worried about the anxiety Edie would be experiencing while getting her hair and nails done–without her.

A few months later, I wrote Melissa a letter of recommendation for a graduate program. It was a positive letter. I described her as caring and willing to be a strong advocate for vulnerable populations….or something vague like that. What I should have said is that she went to bat for someone who couldn’t go to bat for herself. Was she right to be so judgmental of Edie’s family? Did she handle it in the best way? I don’t know. However, I respect that she was willing to stand up when she felt someone was being mistreated. We need more people like Melissa.

As for Edie’s daughter…I respect her as well. She was keeping a promise to her mother, and I can’t judge her for that. Her commitment to reflecting the priorities her mother showed throughout her life was admirable.

I tend to think in black and white. I want someone to be right, and someone to be wrong. That makes the world simpler.

Yet…sometimes nobody’s really wrong. Sometimes we are all just people doing the best we can.

Melissa was doing the best that she could for Edie. Edie’s daughter was doing the best that she could for Edie.

It wasn’t long until Edie passed away. She fell at the memory care community and never really recovered. I saw her obituary in the paper. The photo looked relatively recent, and she was a beautiful woman. I remember wondering if she wore sunscreen daily, and I hoped that I would look as good when I was in my 80s.

I hadn’t talked to Melissa in a while, but she emailed me. She wanted to me know if she should go to Edie’s funeral. She really wanted to…but she just wasn’t sure if she should.

I told her no. I told her not to go to the funeral. I thought seeing Melissa at the funeral might put the family in an uncomfortable situation. I don’t know if I was right or wrong, but I was doing the best I could for the family–and for Melissa.

This was about eight years ago. I’ve thought a lot about my role in the conflict between two women who were doing the best that they could. Maybe I could have done…differently.

But I know Melissa and Edie’s daughter were doing their best, and I have to understand that I was doing my best as well.

Sometimes everyone is doing their best, but things don’t turn out the best.

 

 

 

 

Why You Shouldn’t Start Statements with “At Least” in Dementialand (And Elsewhere)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful.

The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting.

I read something recently that made me think.

A woman who had been through a heartbreaking crisis that ended in the death of her infant suggested that people who try to console others should avoid statements that start with “At least…..”

This didn’t impact me at first–but then I thought about all the “At least” statements we throw around, trying to help but hurting.

When a woman has a miscarriage, we tell her at least she can have another baby.

When a married couple can’t get pregnant, we tell them at least they can still adopt.

When a person dies suddenly, we say at least they didn’t have to suffer.

When a person dies slowly, we say at least you had time to say goodbye.

When parents lose a child, we say at least they have other children.

These statements come from people who are well-meaning. They come from people who are trying to help…but they don’t help. They don’t help at all.

There are other (less dire) times that we hear statements like this. Last semester I was on a time-consuming, although rewarding, work committee that was somewhat stressful and required me to sacrifice a few weekends and many evenings. As some other committee members and I were sitting around at a hotel bar after a day of tiring meetings and venting about the experience, one of them said to me, “At least you don’t have kids.” Um. Thanks. (I guess not having children makes my time less valuable.)

Statements that start with “At least” are often made to those in Dementialand. Here are some comments that families have relayed to me or that I have overheard:

At least it’s not cancer. (Comparing who has the worst disease is seldom helpful to anyone.)

At least it’s not terminal. (Ummmmm….insensitive and also inaccurate.)

At least you have a great family. (One guy told me a friend said this to him and he responded, “Yeah, and I love the idea of putting them through this.”)

At least it’s not something physical. (This one typically comes from someone without a knowledge of dementia.)

At least it’s something that progresses slowly. (I find that the idea of the slow progression is one of the scariest pieces of dementia to some people.)

At least there’s a medicine you can take for that. (Yeah–but the medications don’t slow or stop the disease.)

At least you won’t know what’s happening when things get really bad. (REALLY?)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful. The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting.

 

 

 

Urinary Tract Infections in Dementialand

When someone with dementia shows changes in behavior, we need to stop saying that they are giving us a hard time. We need to understand that they are having a hard time.
And sometimes when they are having a hard time, it’s because they are experiencing pain.

For better or worse, dementia progresses slowly. If someone with dementia shows a sudden behavior change, my suggestion is always to consider whether they might have pain that they are unable to express verbally.

Obviously, pain can be a result of numerous physical conditions–but I recommend checking for a urinary tract infection (UTI) first. People always think I have some sort of magical powers when I correctly diagnose a UTI without seeing their loved one (and without being a medical doctor), but I’m just playing the odds.

UTIs are incredibly common among those with dementia.

First of all, dementia causes individuals to have a compromised immune system. Once a UTI sets in, it may spread quickly. I can think of about ten people with dementia that I have known who have passed away as a result of a UTI that was identified too late and not contained. Yes, UTIs can often be fatal in those with dementia.

A UTI can cause “delirium,” an acute state that might include hallucinations, delusions, agitation, and restlessness. For someone who typically shows symptoms of dementia, it often appears that their condition has worsened quickly. These sudden changes are not a result of dementia but rather an indicator that the person has another health issue.

Sometimes a person with dementia expressing UTI symptoms might be mistaken for being overtly sexual. For instance, I have known several of men whose loved ones were called by the nursing home staff because they were taking off their pants and fondling their genitals in front of other residents. In many cases, a quick urinalysis will show a UTI.

At the risk of TMI (e.g., too much information), I have had urinary tract infections. In a span of 24 hours, I have gone from “something might be wrong” to the type of pain that is constant and disrupts sleep. It is horrifying to me to think of not being able to express this pain to others around me and seek help. However, I have seen many individuals with dementia be accused of giving their caregivers a “hard time” when in fact they had no other way to express that they were in pain. (Even worse, this happens with kidney stones.)

Dehydration can also be an issue with people who have dementia, and dehydration makes one prone to UTIs. It’s important to keep fluids in reach of someone with dementia when they may not remember or be motivated to get beverages on their own. People should also be encouraged to use the restroom frequently. Not surprisingly, poor hygiene can increase one’s risk. If someone lives alone and doesn’t remember to change their underwear, it’s likely that they will eventually end up with a UTI.

So…here are some of the changes in people with dementia that caregivers have noticed when a UTI had set in (note that is not an all-inclusive list):

  1. The person is unusually cold or hot for the environment (shivering, fever, etc.).
  2. The person sleeps a lot more than usual–or the person doesn’t sleep when sleeping is usually not a problem.
  3. The person grabs at their genitals or tries to take their clothes off.
  4. The person becomes incontinent.
  5. The person becomes aggressive toward themselves and/or caregivers.
  6. The person appears to be in pain when urinating (perhaps indicated by change in body posture or facial expression).
  7. The person starts to fall more often or have issues with balance.
  8. The person is suddenly much more confused than usual.

Obviously, some of these are symptoms of dementia, but keep in mind that dementia is a slow-moving condition. Changes that occur quickly may be a result of a UTI or another medical condition.

A woman I know was recently concerned about how quickly her mother’s Alzheimer’s was progressing. In a period of about 72 hours, she went from being calm and good-natured to lashing out when someone tried to assist her. She was suddenly confused about who her daughter was and her environment. She also refused to get dressed and would fight anyone who tried to convince her to take off her nightgown. I was asked if it’s normal for Alzheimer’s to progress so quickly.

Although aggression and confusion are part of Alzheimer’s, it’s not normal for these changes to occur so quickly. I suggested starting with a urinalysis. Sure enough, she had a raging UTI.

I often tell caregivers to bring a urine sample (if possible) to any doctor’s office visit. The good news is that a urine screening is fast and cheap. The bad news is that collecting urine might become more challenging as dementia progresses.

I recently heard the term “dementia detective.” The term was used to describe someone who pays attention to someone with dementia with the goal of figuring out their needs. We need more dementia detectives.

When someone with dementia shows changes in behavior, we need to stop saying that they are giving us a hard time. We need to understand that they are having a hard time.

And sometimes when they are having a hard time, it’s because they are experiencing pain.

 

 

Knowing Better and Doing Better in Dementialand

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.

 

 

 

 

 

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

I was diagnosed by my husband as having an affliction called Mean Listening Face about four years ago.

A college student that I had in class previously was at our house for pizza. She was telling me about how she had recently applied for a few positions at non-profit agencies. She looked at me and stopped in the middle of a sentence.

“Oh, is that not a good place to work?” she asked me. I had no idea why she was asking me this.

My husband jumped in and said matter-of-factly, “Elaine isn’t intending to give you that look of disapproval. She just has Mean Listening Face.”

This was the first I had heard of my Mean Listening Face. I didn’t argue with my husband, and there was no further discussion of this affliction between the two of us.

A few days later, I was out to lunch with a friend. I decided to ask her if I had Mean Listening Face. I anticipated that she would ask me what the heck I was talking about and then tell me that my husband was crazy.

Instead, she said, “Yeah, I totally see where he’s coming from. I don’t know if you’d make a good counselor.” I went from being annoyed that my husband was overanalyzing my behavior to wondering why no one had told me this sooner. Seriously, friends…you should’ve done an intervention long before this.

I went home and looked in the mirror. I tried to pretend that someone was telling me something important and personal. Sure enough, I got these lines on my forehead and my eyes got intensely squinty. Yep. I had Mean Listening Face.

I realized that when I concentrated on what someone was saying…when I really wanted them to know that I cared…when I was processing what they were saying with all of my attention…I looked annoyed. I looked angry. I looked like I was trying to shoot bolts of fire out of my eyeballs. It’s a great face for playing cards when I don’t want anyone to know what I’m holding, but not a great face for empathetic listening.

You might think this is a small thing, but it’s really not. College students come to my office and need assistance. They may be struggling with college life or feeling like they don’t belong. They might not know what major to choose or what direction they want to go in life. I’ve even had students who are dealing with depression or anxiety. And what do I do? I give them Mean Listening Face.

And then there’s the work I do with dementia caregivers. In my conversations with them, it occurred to me that I might be giving off Mean Listening Face when they were depending on me to reassure them. Most of all, my husband’s diagnosis of my Mean Listening Face made me realize that perhaps I wasn’t giving off the vibe I intended to when I spent time with individuals with dementia. As dementia progresses, the words themselves become less important. The non-verbal cues become more important. In time, they become everything.

It’s about body language. It’s about facial expression. It’s about tone of voice. Dementia can destroy a person’s capacity to understand language. However, the ability to decipher the non-verbal aspects of communication remain much longer.

And the non-verbals are pretty important for those of us who don’t live in Dementialand. I have to admit that I get annoyed with college students who sit in class and roll their eyes at me. (I have actually dropped my attendance policy because I prefer students who roll their eyes at me just not come to class.) Then there are those who sit in the front row and make eye contact. When a student asks for a letter of recommendation, I have to wonder if their non-verbal communication with me is just as important (if not more important) than their verbal communication.

I had a series of several doctor appointments and an ER visit last spring that ended in a diagnosis of a separated rib. (Apparently you can have a separated rib even if you have no idea that you’ve had a traumatic event that may have caused a separated rib.) This was after misdiagnoses of a hernia, a kidney stone, and a urinary tract infection. Visiting several doctors in a span of a few weeks made me realize the importance of non-verbal communication in the medical industry. One doctor who saw me made me feel like everything I said was important to him. He made me feel like he genuinely was concerned about my level of pain. After leaving the office, I realized that he hadn’t said anything different than the other doctors I visited. It was how he said it.

While receiving the “right” non-verbals can make your day, receiving the “wrong” non-verbals really put you in a foul mood. I recently sat on an airplane next to a person who made it his goal to take up as much of my personal space as humanly possible. Without exchanging a word, we engaged in a battle. It was a battle of non-verbals. A battle of physical space. A battle over tray tables, carry-on space, and arm rests. A battle that I lost and let ruin my afternoon. I’m getting angry again as I think about it. Yet, not a single word exchanged during the two hour flight.

I’ve heard that 70% of communication is non-verbal. My theory is that this percentage increases as dementia progresses. When someone approaches end-stage dementia, how we say something is more crucial that what we say. And showing people that what they say is still valued–by eye contact, posture, facial expression, and touch–may be more important than our verbal response. People read physical cues long after they become unable to decipher words and sentences.

Last year I was visiting an adult day center and talking to a guy with vascular dementia, Bob. Bob is one of my favorite people. He is what I like to call “pleasantly confused.” He cannot tell you what year it is or where he is. In fact, he once asked me if I had come to see him so I could “shave his sheep.” (His family later told me that he had not been a farmer and had never owned any sheep.) Everything he says, however, is delivered with a huge grin. He has a laugh that lights up the room–even if the people in the room have no idea what is so funny.

Bob was telling me a story about a dog he had that ran away and came back home with a litter of kittens and a baby skunk. I have no idea if this story was true, partially true, or not true at all, but it was a really good story. And I had no interest in figuring out if it was true. It didn’t matter. It was the funniest story I had heard in a long time. However, I had to be back at the office for a meeting, so I took a quick glance over Bob’s shoulder at the clock.

“You’re in a hurry,” he said, stopping the story. “You’ve got things to do. You’d better go.”

My heart sank. I was upset at myself for giving Bob the impression that I was in a hurry and spending time with him was not a priority. Furthermore, it blew my mind that a guy who seemed so out-of-touch with reality noticed my split-second sneak peak at the clock. I was busted. On that day, I failed with my non-verbals, and I ruined a great story.

I’m working on my Mean Listening Face. It’s a conscious effort. When interacting with someone with dementia, I sometimes silently tell myself to relax my eyes and stop clenching my jaw. Actually, I do this when I’m talking to people who don’t have dementia as well. I’m hoping this will also help to prevent wrinkles as I age, but that’d just be icing on the cake. If you think you might also have Mean Listening Face, let me know. Perhaps we can start a support group.

Outside of Dementialand, words can connect us efficiently. Yet, the deepest and most intimate connections are based beyond words. No place is this more true than in Dementialand…where words often fail us. If we want to connect heart-to-heart with people as they move toward the end of their dementia journeys, we must sometimes forget words and speak a different language.

Habits of Sane Caregivers in Dementialand

Sometimes I write for people with dementia. Sometimes I write for people who have no experience in Dementialand. But today…today I am writing for dementia caregivers. And, really, for all caregivers.

If you are a caregiver, things can get pretty rough. I can show you research studies on the rates of clinical depression among caregivers. Spoiler alert–they’re astronomical. (They’re high among caregivers and higher among caregivers of those with dementia.)

Your life has to be lived one day at a time…maybe even one minute at a time. You get angry. You want to say that you’re angry at the disease and not the person, but I know that sometimes it’s not always easy to separate a person and a disease when you’re living on a couple hours of sleep a night.

All caregivers struggle. Some struggle outwardly; others seems strong on the outside but bury their struggles inwardly. You are not alone in your struggle–but I know it seems that way sometimes. Maybe your family is supportive, but it’s likely some of them make your life more difficult rather than easier. I’m guessing some of them make you crazy. Maybe you’ve got some friends…but some of them probably just don’t get it, even if they try.

I’ve put together a list of habits that I typically see in caregivers that maintain their sanity. [And–let me state for the record–a caregiver that stays sane might sometimes feel like they are losing their mind. They might cry. They might get angry. Maybe they sometimes make poor decisions. They mess up (we all do, right?). They could be on Lexapro or another anti-depressant. But they get through…day by day…minute by minute.]

Habits of Sane Caregivers

1. They sleep. Sure, maybe some nights are better than others. But they find a way to sleep. And, when they start getting an unacceptable amount of sleep each night on a regular basis, they find a solution. Maybe this means having someone watch their loved one a few afternoons a week so they can take a nap. If anxiety keeps them from sleeping, they go to a doctor or a counselor. They understand that they can’t caregive without sleep.

2. They leave the house. I know a guy who cared for his grandma who had Alzheimer’s. At one point, he went over a week without leaving the house except to shovel and take the trash out. When other people heard about this, they thought of him as a hero. Staying in the confines on your home doesn’t make you a hero. It sets you up for depression and stress–which sets you up for sub-par caregiving. Get the heck out of the house once in a while.

3. They understand that others can give care, too. A husband I once talked to loved his wife so much that he wouldn’t leave her side….24/7. He didn’t trust anyone else to take care of her. He thought he was the only one capable. He had plenty of people volunteering to come over and stay with his wife for a bit, but he declined their help. Let go of the idea that you are the only one that can provide care. Maybe someone else isn’t going to do things exactly the way you do them. That’s okay. Accept help.

4. They have a sense of humor. I don’t know what makes you laugh. Funny movies. Videos of cute cats on YouTube. Conversations with friends. Comic books. The Ellen Show. Sports bloopers. South Park.  Figure out what makes you laugh and actively seek that out. And don’t feel guilty for laughing.

5. They go to the doctor. The people who are the best about getting their loved one to the doctor when needed are often the worst at seeing the doctor themselves. And if you aren’t healthy, you can’t provide care. So go to the doctor for small health issues…so you don’t end up with big ones. I talked to a guy once who had a sinus infection but wouldn’t go to the doctor because his wife was dying from cancer. His sinus infection didn’t seem important when he thought about what his wife was going through. Ironically, it was his wife who finally told him that he needed to get his butt to the doctor to get some antibiotics–because he was getting increasingly irritable (or “pissy” as she said) since he didn’t feel well. You do the people around you a favor when you take care of your health.

6. They don’t feel guilty. As a caregiver, you mess up. Maybe you thought your wife only needed one pain pill, but in retrospect you should have given her two. Perhaps you tried to make dinner and it was a flop. Or you messed up the time of your grandma’s appointment and she was 30 minutes late. You gotta move on. Consider it a learning experience. Caregiving involves a set of practical skills, and we get better at those skills over time. When you make a mistake, don’t beat yourself up. Learn from it and move on. You have a limited amount of energy. Guilt is a complete waste of energy.

7. They understand that the goal is to have a good day. They understand that their loved one will not “get better.” They are realistic in understanding that decline is inevitable in the case of Alzheimer’s, Frontotemporal dementia, or a terminal cancer. Yet they get that tomorrow can be a better day, even when their loved one isn’t improving.

8. They forget about people who aren’t supportive. They don’t continue to count on people who don’t come through. It doesn’t matter if those people are family or friends. It doesn’t matter if they have known they for decades. They stop letting those people disappoint them. They find new people to support them. Sane caregivers make a conscious effort to surround themselves with people who don’t screw them over time and time again. And when people do screw them over, they don’t spend a lot of time calling them out on it. They don’t have the time to waste on that type of thing. In short, they don’t do drama. 

And a few final notes. If you are a caregiver, listen to me here. It is okay to eat frozen pizza a couple nights a week. It is fine if sometimes you don’t return a phone call. Your neighbors will just have to deal with it if you don’t cut your lawn for ten days. Don’t be too hard on yourself if your flowers die because you forget to water them. (Tip: Buy hanging baskets of flowers. If they die, throw them away and buy new ones. It’s what I do.)

I once overheard two women who were caring for their husbands with Alzheimer’s having a conversation about the demands of their everyday lives.

“You know what we need to do?” one said to the other. “We need to stop feeling bad about all this stupid shit.”

Exactly. 

Why There Are No Superheroes in Dementialand

Tuesday was National Superhero Day. There’s a day for everything, right? Pancake Day, Oyster Day, Star Wars Day.

Superhero Day got me thinking in a way that National Frozen Food Day, Johnny Appleseed Day, and Goddess of Fertility Day did not. (However, National Frozen Food Day did make me crave frozen French toast sticks and tater tots.)

I’ve been thinking about how I don’t believe in superheroes, and I take issue when people call other people superheros.

I have a friend who is pretty impressive. She gets up every morning at 4 and runs 6-10 miles. Then she works all day. At night, she teaches a couple of yoga classes. She’s kind, funny, and humble. I don’t know how she does it. I’ve heard a lot of people say she must be a superhero.

But saying she’s a superhero doesn’t do her justice. Superheroes have special powers. They have capabilities that the rest of us don’t have. That means superheroes aren’t really that inspiring or impressive. My friend doesn’t have any special powers. She does what she does because she chooses to rather than because she’s some special breed. I think that’s more powerful than having some sort of superpower status.

I’m not inspired to go out and fight crime in my community because a superhero does it. I might be more inspired if a real person did it. To me, real people doing impressive things are infinitely more amazing than superheroes.

I am in awe of some of the dementia caregivers I have met. They are family members, friends, neighbors. They never sought out the caregiving role. It wasn’t a job they applied for and it wasn’t a path they chose, but they do the best they can.

It’s a guy who plays Uno with his wife for hours even though she doesn’t remember the rules and they are basically pushing cards around on the table aimlessly. And it’s not a burden to him. He loves every minute of it and knows someday he’ll cherish this time spent together.

It’s a woman who patiently answers the same question over and over when her husband with Alzheimer’s asks it …again…again…and again. And, amazingly, she answers in the exact same tone of voice the first time and the thirteenth time.

It’s a daughter who knows her mom’s medical record like the back of her hand. She organized and systematic in caregiving. When her mom is hospitalized and a medication mistake is made, she’s quick to correct it.

And I’ve often mistaken some people with dementia for superheroes. I know people in the earlier stages of dementia who do public speaking, sit on panels, and write books. I am in awe of them for the courage they show in times of uncertainly. They put themselves out there despite their own fears. They help me learn things about dementia that I could learn in no other way. They are making more of a difference than they realize.

A couple of days after September 11, 2001, I heard something that has stuck with me. When there is a disaster or a tragedy, you will see good-hearted, kind, and giving people stepping up to the plate. You have to look for those people and notice that positivity or your spirit can be destroyed by witnessing the devastation. And I was amazed (and continue to be amazed) at the good that 9/11 brought out in people.

But all those people sifting through debris at the World Trade Center? They weren’t superheroes. They were ordinary people stepping up to the plate in extraordinary ways. They were real. And I don’t think we can fully appreciate their actions unless we understand that they were real people with friends, families, strengths, vulnerabilities, fears, and favorite TV shows.

I feel the same way about some of the people I’ve met in the dementia community. They step up to the plate in times of struggle and tragedy. I remember having a conversation with the son of a middle-aged woman who had dementia. He had changed his work schedule to work third shift so that he could stay with his mom while his father worked during the day. He and his father had worked out this plan to delay placing his mother in a memory care unit.

When I was speaking with this guy after a support group meeting, I noticed a woman standing nearby eavesdropping on our conversation. Finally, she jumped in and said, “Wow. You sound like Superman.”

The man made some jokes about how no one had ever seen Superman and him in the same room. Then he pointed out that he was in no way a superhero. In fact, he was sleep-deprived son who was just trying not to screw everything up. He said that some of his days with his mom were epic disasters, but he kept thinking about how he could do better–and he kept showing up.

He told us that a few weeks ago he had forgotten to get gas and found himself stranded and embarrassed on the interstate…with his mom in the passenger seat. And a good day was when he had time to grab matching socks. He confided that he had no idea how much longer he could do this. He said that he often wondered if he needed to be on anti-depressant and he really wanted to start going to church again but Sundays were his only day to sleep in.

It’s only after I hear about the real struggles of caregivers that I appreciate what they do.

Superheroes don’t impress me. Real people do.

A Bad Day in Dementialand (aka Why I Am Not a Saint)

Any frustration I feel working with people who have dementia does not compare to the frustration of having dementia. Sometimes I have anxiety when I work with people who have dementia…because I worry I’m not handling a situation right or that I’m making things worse. But that anxiety is nothing compared to the anxiety some of my friends with dementia feel.

If I meet someone for the first time and they ask what I do for a living, I say that I’m a college professor. If the conversation goes a little further, I tell them that part of my role is also doing community outreach on Alzheimer’s and related dementias.

A typical response is, “Being around people with dementia must be so difficult.” Sometimes people say, “That must be really hard for you.”

They say it as if they think I’m some sort of Mother Theresa. Trust me…They’ve definitely no reason to perceive me as a saint. When I get frustrated, I curse like a sailor, and there are times I’m not even all that nice (in my defense, that’s typically when I’m hangry). I also once punched a guy at a waterpark while we were both treading water–although that was because the guy was stealing inner tubes from small children. But, in summary, I’m in no way an angel.

I’ve struggled to verbalize how I feel when someone says it must be hard working with people who have dementia or when someone says I’m great for working with “those people.” Finally I’ve finally come up with a response.

I say something like, “Working with people who have dementia is not nearly as hard as having dementia.”

I went to a memory care community a while back to visit some people who have Alzheimer’s. I was looking forward to seeing a particular woman–that I’ll call Donna–that I had a great chat with when I had visited the previous month. (For the purposes of my work, a “great” chat may not make a bit of sense but generally includes a lot of smiling and laughing.)

However, when I got there, Donna seemed like a completely different person. I’m not talking about her level of confusion. (I don’t judge how well someone is doing by their level of confusion. In fact, sometimes “pleasantly confused” is a great goal).

In sum, her whole demeanor was different. No smiling. No laughing. I couldn’t connect with her. She wouldn’t even make eye contact with me.

Donna was anxious. Almost panicky. Terrified of something. But she couldn’t express what. And I just couldn’t get “in.”

She was teary-eyed and it was almost like she couldn’t catch her breath. Perhaps she was having a panic attack. I wondered if she was in pain but I was told the nurses had found no reason she’d be hurting.

I had no idea how to help her. I sat with her for a while. She was sitting in a recliner by her bed, and I sat on the edge of her bed. I think she knew I was there, but I don’t know.

I went to talk to the lifestyle coordinator at the facility, who happened to be one of my former students. I asked her about the situation and she got visibly emotional. She said this had been going on for a few weeks and she didn’t know what to do either. They had been using sedatives but they seemed to cause hallucinations and other side effects for Donna.

We decided to try some music. I have seen music have amazing effects for people with dementia. In many cases, it can be more effective than a sedative in reducing anxiety. We turned on some Sam Cooke. If anything, it made her more agitated. We tried Johnny Cash and Frank Sinatra. Even worse. At one point (during “I Walk the Line” if I remember correctly), she lifted her arm like she was trying to slap the lifestyle coordinator. It was her only acknowledgment that we were with her.

When I was in Donna’s room with the lifestyle coordinator, Donna’s daughter and teenage granddaughters came to visit. They lived across the state and hadn’t seen her for a while. The sight of her made them break down. One of Donna’s granddaughters went down to the lounge and didn’t come back.

I remember taking a glance at my cell phone and realizing that I had stayed much longer than I had planned to. I had a meeting on campus, and I had to hustle to get there.

I remember getting into my car and taking a moment to just breath–even if meant I’d be a little late to my meeting. I’ve been with people with dementia in their final hours and as they’ve passed away, but those few hours with Donna were much, much tougher for me.

On a personal note, I related to Donna because I’ve had issues with anxiety and depression. Although I at times felt alone on my journey, looking back I really have never been alone. I could reach out for support. I could connect with people who cared about me, and people have always been there when I needed them.

Donna, on the other hand, was alone. We were with her, but she was alone. She couldn’t let us in to support her. She couldn’t let us in to be there for her. I had this strong feeling that Donna needed us, and I knew we wanted to be with her, but Alzheimer’s wouldn’t let us.

That was the hardest day I’ve had working with someone with dementia. As I drove back to campus, I felt a little bit sorry for myself. My mind was on Donna (and my failure in being there for her) but I had to pull it together for a meeting on something that seemed pretty inconsequential. I was tempted to say I was sick and skip the meeting. I was exhausted. And I felt like a loser, to be honest. I have a ridiculous amount of tools in my repertoire to connect with people who have dementia. Every single one of them had been an epic fail on this day. It was a bad day for me.

Then I realized it wasn’t a bad day for me….because it wasn’t about me. It was breaking my heart that all of my strategies had failed with Donna, but thinking this way made it about me–not about Donna.

Donna had a bad day.

So is it hard to work with people who have dementia? I don’t think it’s harder than working with other people. In fact, I could never work with preschoolers or juvenile delinquents. I’d lose my mind. And I had a very brief career in retail when I was in high school. That’s when I realized how horrible people can be. And don’t even get me started on when I worked at the Chinese restaurant. I lasted three weeks.

Sometimes working with people who have dementia is challenging or frustrating–but I think working with people in general can be challenging or frustrating.

Any frustration I feel working with people who have dementia does not compare to the frustration of having dementia. Sometimes I have anxiety when I work with people who have dementia…because I worry I’m not handling a situation right or that I’m making things worse. But that anxiety is nothing compared to the anxiety some of my friends with dementia feel. So is working with people who have dementia that hard? Nah. Not really.

And am I a saint? Not even close. And I don’t like it when people imply that I must be some sort of angel for working with people who dementia because that suggests that it must be such an unpleasant ordeal that only an angel would do it. That’s just not the case.

Some of the most amazing people I know happen to have dementia. Being able to enter their world has been one of the greatest gifts of my life.

Tequila in Dementialand

A woman had recently been admitted to hospice and her family wanted to go out of town to attend a wedding. The volunteer coordinator asked if I might be able to stay with her for an evening.

Bev (not her real name) was a divorcee in her 70’s who had had vascular dementia. She’d experienced several strokes and had been told she was in heart failure. I know she had a constellation of other health issues as well. As a former director of nursing at a nursing home, she knew where this was headed.

When I first came in, Bev offered me a drink. I made a rule for myself when I started volunteering for hospice to say yes when I was offered food or drink because people often feel the need to give me something and–to be honest–I really like eating and drinking. But when I asked Bev what she had, she threw me for a loop.

“There’s beer and wine in the fridge,” she said. “Do you like tequila? What do you like? There’s hard stuff, too.”

And she wasn’t kidding. Bev had the most well-stocked home bar I’d ever seen. Several kinds of tequila, rum, multiple flavors of vodka, whiskey, bourbon, you name it…. I’ve been to many bars that did not have that selection of alcohol.

“Do you have any soda?” I called from the kitchen.

“For a rum and Coke?” she asked. I laughed out loud, but it wasn’t a joke. I grabbed a Coke. Just a Coke.

Bev kept forgetting who I was and why I was at her house (although this didn’t stop her from continually offering me alcoholic beverages throughout the evening). She’d ask me to remind her who I was, but it didn’t seem to bother her in the least that there was someone in her house that she didn’t recognize.

Despite her dementia, Bev was pretty clear on some things. She knew she was in hospice, and she knew she had limited time. She was certain of how she wanted to die.

She told me that she had a large extended family and they spent a lot of time at her house. She told me that she thought it was partially because they loved her and partially because she kept her bar stocked. At least four nights a week she had a crowd at her house. They drank, played cards, watched movies… And she had already told her family that this was not going to change now that she was in hospice.

“The party goes on,” she told me. She didn’t want a bunch of solemn goodbyes.

Then she asked me if I’d pour her a glass of tequila. I didn’t know what to say. This was the first and last time a hospice patient had ever asked me to play bartender. I had a cell phone number for Bev’s daughter, so I decided to give her a call. I asked if her mother was allowed to have a glass to tequila.

The daughter said that Bev’s doctor had told them it was okay for Bev to have one drink each night. I felt a little bit uncomfortable pouring a drink for my hospice patient, so I brought her the bottle and a glass. With shaky hands, she poured it herself.

As we were sitting together and Bev was having her tequila, there was a knock on the door. It was two guys delivering a hospital bed. Bev’s daughter had indicated that they might be stopping by.

“Where does the bed go?” one of the guys asked.

“Right here,” said Bev, motioning to her dining room. The two guys and I gave her a funny look.

I decided I had better call Bev’s daughter. I explained to her that Bev was intent on having the hospital bed in the dining room. Bev’s daughter wanted to know why, so I asked Bev. She took a long drink of her tequila before answering.

She explained that she wanted to be in the midst of everyone. She didn’t want to be isolated upstairs in her bedroom as her condition progressed. And, she told us, she needed to make sure the bar was stocked. This was something that Bev had given some thought to. Her daughter hesitantly agreed, and the two guys brought the bed in.

They set up the bed and left. Bev turned to me and asked (again) who I was and why I was at her house. After I told her, she told me I should get myself a glass of tequila. My high school and college peers had not pressured me to drink as much as Bev was pressuring me to drink.

Although she was having difficulty remembering who I was, she was open to sharing details of her life with me. She told me that her husband had left her a few years ago. I had a feeling it was a few decades ago, but that didn’t matter. She mentioned that he “couldn’t handle the party of my life.” She told me that her husband thought she was an alcoholic.

“Maybe I am an alcoholic,” she said, leaning in. “But I’ve had a pretty good life.”

Her daughter got back about 10 pm. At this point, Bev was fighting to stay awake on the couch. As I left, she offered me a drink “for the road.” I was putting on my coat in the foyer when I heard her ask her daughter about me.

“Now, who was that? She seemed nice but I guess she doesn’t drink. I offered her the special tequila,” she said.

About a month later, the volunteer coordinator called to let me know that Bev had passed away. I didn’t ask for any details. I wanted to think she passed away in that hospital bed in the dining room with the party continuing around her.

I can’t drink straight tequila, but that night I had a margarita.

Bev was wrong about me. I do drink. I only wish I could’ve used some of her good tequila in that margarita.

Pain in Dementialand (aka What Kidney Stones Taught Me)

The amount of pain experienced by those in end-stage dementia terrifies me. We know that at the end of life people with dementia receive only a fraction of the pain control medications of that those without dementia receive. Are they in less pain? Nope. We have no reason to think that dementia stops individuals from feeling pain. Dementia eventually stops people from communicating pain and understanding its cause, but research shows that pain-related brain activity is the same in people with and without dementia.

In 2010, I had my first bout with kidney stones. If you’ve had kidney stones, I know the last sentence just made you cringe.

The night I ended up in the hospital, I had read in some magazine that a great way to make your hair really shiny was to apply conditioner, tie a towel around your head, and go to sleep. When I woke up at 3 a.m. in the most awful pain of my life, one of the first thoughts that crossed was my mind was that I’d be headed to the ER with huge globs of greasy conditioner in my hair. For the record, I was also wearing pajama pants with lobsters on them. I’m sure they’ve seen worse.

As it turned out, I’d end up in the hospital to have surgery and the conditioner would stay in my hair about four days. After the whole thing was over, I had the best moisturized hair in town. It was silky for weeks.

I had never really experienced pain before. Sure, I’d had a few sports injuries here and there. But nothing like this.

You don’t get a lot of attention when you’re in the hospital for kidney stones. They’re terrible, but they aren’t typically life-threatening. Fortunately, I have a fantastic husband. He did everything he could to get me through. I remember saying I needed more pain meds. He went to talk to the nurse. I remember saying during a morphine-induced meltdown that the only thing that I could eat was Red Vine licorice. He was there with some in 20 minutes. I don’t think I ate it, but he was a total MVP.

But here’s the thing. I was able to communicate. I was able to tell people I was in pain. I could tell people where it hurt. I could tell people what I thought might make me feel better. It was my ability to communicate that led to my diagnosis, my morphine pump (shout out to whoever invented the morphine pump), my surgery, and my return to a pain-free life.

A few months after I got out of the hospital, I remember overhearing a conversation about a woman with Alzheimer’s who lived at nursing home. The nursing home staff was talking about how she had been “difficult” lately. She resisted them when they tried to help her to bathroom. When they tried to assist her with eating, she wouldn’t open her mouth. The staff was clearly annoyed that she was being obstinate.

Except she wasn’t being obstinate. At the end of the conversation (almost as an afterthought), one of the staff members mentioned that the woman had recently had a CT for another reason, and the CT showed that she had several large kidney stones that would eventually pass. And she was being pegged as being difficult?

Can you imagine being in the most horrible pain of your life and not being able to express this to anyone? People with dementia are often unable to tell others that they are in pain. We have to be detectives. Often we think changes in behavior are due to progressing dementia, but they may also be due to other health conditions.

I have a friend who works at a memory care community. She had a resident with dementia who started crying out when she was given a bath. A maybe “crying out” is an understatement. “Screaming bloody murder” is probably a more accurate description. The other staff seemed intent on quieting her with a sedative, but my friend knew there was something wrong. Really wrong.

At one point, she said to the resident, “I know something terrible is happening to you, and I am so sorry I don’t know what it is.”

One night the resident was screaming so loudly that they called her family. Her family took her to the ER. The resident had stage IV pancreatic cancer. She went into hospice and passed away less than a month later.

Would her family had chosen to treat the cancer had they known about it sooner? Probably not, but they could have controlled her pain.

It is common that individuals with end-stage dementia have urinary tract infections due to compromised immune systems. Although most of us might consider a urinary tract infection no big deal, it often spreads in individuals with dementia–who then have life-threatening sepsis. Can someone with advanced dementia tell you that it hurts when they urinate? Maybe not.

The amount of pain experienced by those in end-stage dementia terrifies me. We know that at the end of life people with dementia receive only a fraction of the pain control medications that those without dementia receive. Are they in less pain? Nope.

We have no reason to think that dementia stops individuals from feeling pain. Dementia eventually stops people from communicating pain and understanding its cause, but research shows that pain-related brain activity is the same in people with and without dementia.

A caregiver I met recently took her mother, who was in the late stages of dementia, to the ER because her mother kept groaning, clutching her stomach, and crying. The ER doctor slowly explained the pain scale (the one on the wall where you have to rate your pain from 1-10 with the annoying animated faces). The caregiver told the doctor that her mother had dementia and wouldn’t be able to use the scale. The doctor insisted he try anyway.

“So what is your pain on a scale of 1 to 10?” the doctor asked.

Her mother just looked at the doctor and laughed uncomfortably. She was unable to give any details about her pain. Was it acute? Was it aching? Was it sharp? She couldn’t say. The doctor sent her home and told her daughter she probably had indigestion. They later found out that she had stomach cancer.

The caregiver called the ER doctor to let him know. The doctor’s response was that his misdiagnosis really didn’t hurt anything–because the cancer was terminal anyway. Chemo wasn’t an option for a person in end-stage dementia. His misdiagnosis didn’t hurt anything–except his patient, who was forced to endure weeks of pain because a doctor wouldn’t take her complaint seriously because it didn’t fit within his typically framework for assessing pain.

A lot of aspects of dementia are scary, but I’m not sure any are as frightening to me as undetected pain. And we do a very poor job assessing the pain levels of those who have dementia. After struggling with kidney stones and experiencing true pain for the first time in my life, this haunts me even more.