Sometimes in life you see what you expect to see.

I’ve realized that I expect to see dementia. I know how common it is, and I recognize some potential symptoms that others might not notice.

I think about dementia a lot. I write about dementia. I teach about dementia. When I look at the world around me, perhaps I see the world a bit differently because–no matter where I am and what I’m doing–I have dementia on my mind to some degree.

For instance, a few nights ago I was walking down the street after a college basketball game in St. Louis. I saw a man who was likely in his 60’s walking across the street. He was stumbling a bit, and he looked somewhat disoriented. I’m guessing that most people would assume this guy was drunk…but my mind goes straight to “I wonder if he has dementia.” To be fair, it’s probably much more likely that he was drunk, but I see my world through dementia-colored glasses.

I should also add that there are many other possibilities outside of being drunk and having dementia. Maybe it was something else entirely. And it’s a possibility he was drunk and had dementia.

I walked into a theater for a reception yesterday morning (also in St. Louis) with some university administrators and staff members. Everyone else was eyeing the breakfast buffet, but the first words out of my mouth were “This carpet is so not dementia-friendly.” Traveling with me has to be annoying.

Last weekend I was in Springfield, Missouri, with our women’s basketball team. I was sitting with three of our student-athletes at the hotel’s continental breakfast when an older gentlemen walked in and made a plate of breakfast food. He was muttering to himself, and I immediately tuned in because….of course….I wondered if he might have dementia.

He sat by himself but kept talking as if someone was in the seat across from him. He spoke loudly–and at one point he exclaimed, “Well, that’s why I quit drinking in the first place!”

There would be pauses in the conversation but they were short. He’d start up again like another person had just joined him. “Hello there!” he’d say. He must be hallucinating, I thought. He must see a person sitting in that seat.

I was chatting with our student-athletes about relationships and classes, but I was keeping an eye on this gentleman and wondering if perhaps he needed assistance. I wondered if he was staying alone at the hotel. Maybe, I thought, he’s not even staying at the hotel. Perhaps he had become disoriented and was doing what people in the dementia field called “wandering.” Maybe his family was looking for him.

After observing him for about 30 minutes, I said to the basketball players, “I’m concerned about that guy over there. I’m thinking maybe he has dementia.”

“You mean the guy on his phone?” one of the players said.

I looked again.

And then I noticed he was wearing an ear piece. It wasn’t easy to see, but you’d think I would have noticed it after watching him for 30 minutes. And his cell phone was sitting in front of him on the table. I hadn’t noticed that either.

After she pointed out he was on his phone, I realized I had tuned in to all the clues that told me he might have dementia. I had tuned out all the clues that might have told me otherwise.

I have to wonder what other clues in life I am tuning out—because I see the world through my own biases. I ignore information that may be obvious to others around me. I focus on details that confirm my own hypothesis.

I spend a lot of time trying to convince families that their loved one with dementia sees the world differently–that they process information differently and live in a different reality.

But I guess that’s true of all of us.

 

 

It’s the old story of the prodigal son (or daughter).

Mom has dementia, and you have made sacrifices to give her the best quality of life possible. Maybe you are paying out of your own pocket for in-home care. Perhaps you stop by twice a day. You bring over meals. You sit and listen to the same stories on repeat. You get frustrated but you take a deep breath. Maybe you even quit a job you enjoyed so your mom could move in with you. It’s challenging. Some days you are the end of your rope.

Then it starts happening. Mom doesn’t remember you. Sometimes she seems to know you as a kind person who takes care of you. Sometimes she stares at you blankly, as if you are a new face. But it’s been months since she’s called you by your name. The other day she asked if you were her nurse.

You’ve almost come to terms with this, and then your brother (who lives across the country and stops in twice a year to second guess all of the decisions you’ve made about Mom’s care) comes to visit.

“Hi, Mike!” Mom says excitedly as he walks in the front door.

You sink into your chair—trying to figure out how a woman who you spend hours each day with can be clueless about who you are but remember the name of a guy moved away 30 years ago and now stops in semi-annually.

Do you know why that happens?

I don’t either.

And I don’t know what it means.

But I do know what it doesn’t mean….

It doesn’t mean she loves him more.

It doesn’t mean he’s more important to her.

It doesn’t mean she’s trying to spite you for the time she caught you drinking in the basement 40 years ago.

People with dementia don’t forget people because they don’t love them enough. People with dementia forget people because they have dementia.

Some people suggest it can be useful to think of the dementia brain as Swiss cheese.

I recently gave this example during a presentation but accidentally said cream cheese instead of Swiss cheese—probably because I really like cream cheese. My whole explanation broke down because it’s necessary to focus on the holes in Swiss cheese for this to make sense.

When someone with dementia tries to access a brain function, sometimes they come back with “cheese”—a success. And sometimes they get a “hole.” (I would argue that we could think of all of our brains like Swiss cheese. It’s just that the dementia brain has more “holes.”)

When someone tries to remember something and cannot, we often consciously or unconsciously assign meaning to the person or event that they cannot recall. If Dad doesn’t remember his birthday, it must not have been that fun for him. If Grandma doesn’t remember her stepson’s children, it’s because her stepson isn’t as important to her as her real son. If Aunt Bernice remembers your birthday and not your brother’s birthday, it’s because Aunt Bernice realized your brother was a loser years ago.

Or—an example from a conversation I recently had with a college student—if Grandpa can’t remember your major is Gerontology, it’s because he always wanted you to get a business degree.

But maybe we are assigning meaning where there is none. Perhaps they tried to access a brain function and came up with a “hole” instead? Maybe it has nothing to do with you…and everything to do with the declining functionality of their brain. But it’s human nature to think stuff has to do with us even when it doesn’t.

I’m sorry if you are in that hole. I know my explanation doesn’t make it better. As human beings, we don’t like to be forgotten. Knowing that dementia is the culprit doesn’t make it easy that Mom doesn’t know who you are.

I just want you to know that there is no mathematical formula for love and remembering.

If Mom loves you twice as much as your brother, she’s not going to remember you twice as long.

 

 

Let’s talk about patients.

You probably think that’s a typo. I know that it’s not rare to see a typo in my blog. You probably think I meant patience–but I didn’t.

I want to talk about dementia “patients.”

First, an analogy…

My husband, Bill, has had terrible acid reflux since adolescence. He takes medication everyday. He’s visited multiple specialists. He has been to Mayo Clinic to talk about a potential surgical option and had frequent endoscopies. Since I’ve known him, I’ve seen him make many decisions due to acid reflux–what he eats and drinks, when he eats and drinks, when he exercises, how he positions his body when he sleeps.

People do not refer to Bill regularly as an acid reflux patient. I’ve never heard anyone say “I’m going to lunch with my buddy Bill, the acid reflux patient.”

I have allergies. I have dry eye syndrome. I have an immune issue called neutropenia. I’m not regularly called an allergy patient, a dry eye syndrome patient, or a neutropenia patient as I walk around as a human being on this earth.

I’m not defined by my diagnoses.

Yet, whether it is in the context of receiving medical care or not (and it’s generally not), people with dementia are regularly called dementia patients.

A patient is, by definition, a person receiving medical care. We all receive medical care at some point. We are all patients sometimes.

When people with dementia are at SuperTarget or Starbucks, they aren’t patients any more than I am when I visit such establishments.

When I see someone living with dementia out for dinner, they are not a dementia patient. They are just a human being enjoying an oversized plate of food and possibly a cold beer–and they happen to be living with dementia.

Recently I spoke with a woman who works as a waitress at a local BBQ joint. She told me that they serve a lot of dementia patients. I pictured the hospital bringing them over on a bus attached to IV poles.

I recently saw a headline that read: “Dementia Patient Runs 5k.”

Unless that person was running along with a doctor beside them discussing their recent symptoms, they were no more a patient than I would be when I ran my last 5k in October. They’re a person living with dementia.

We are patients when we are in the hospital. We are patients when we must visit urgent care. We are patients when we show up for a yearly Pap smear or when we turn our heads and cough.

What’s with referring to people with dementia as patients all the time?

I often hear the term “nursing home patient,” which also frustrates me. We are working to promote a more home-like environment in nursing homes. We want to promote a culture where people are comfortable in their surroundings—because, well, they live there. You are not continuously a patient in your home. Let’s work on using the term “nursing home resident.”

By defining individuals as patients, we define them as sick. We reference them by their relationship to the medical industry and their diagnosis rather than as a human being. The term patient implies a helplessness and passivity that is often not present in the people living with dementia that I know. When someone is referred to as a patient rather than a person, a different image comes to mind.

Let’s focus on the person.

 

In my opinion, the most exciting development in the field of dementia over the last several years is not a promising drug trial. It’s not a research study identifying–once and for all–the cause(s) of dementia. It’s not a vaccine or a professionally-led intervention. It’s nothing that tenured professors like myself are doing. And it doesn’t take place within the walls of a university or medical center.

I believe that the greatest movement has been the involvement of people living with dementia in advocacy and education. They’ve connected by means of social media and videoconferencing. They’ve started writing. They’ve started doing public speaking.

I know what some of my readers are thinking. They are thinking….people with dementia can’t write. They can’t get up and speak in front of groups. And how would they even set these things up? They can’t use computers, talk on the phone, or keep an up-to-date calendar.

Sure, dementia progresses to a point where writing and speaking become more challenging and–at the end of the disease process–may be impossible. (Kudos to people with dementia who continue to do these things as they become more difficult. And, to be fair, I know lots of people without dementia who struggle with computers and can’t keep an up-to-date calendar.)

There are many individuals living with dementia who are not only capable of this type of public advocacy but capable of doing it quite effectively.

One person living with dementia told me, “I know lots of people with dementia can’t speak out like I can, and maybe someday I won’t be able to do it. That’s why it’s important that I’m doing it now.”

I hear so much about how challenging it is to be a dementia care partner, and it is challenging without a doubt. However, I hear less about how challenging it is to live with dementia. I give much credit to those living with dementia who are willing to educate others about their challenges….and their triumphs.

In some circles, we are replacing the term “caregiver” with “care partner” to identify the partnership that develops between the person living with dementia and those who care for them.

Yes, it is a partnership. It is certainly a shared experience.

But being a person with dementia and a care partner are different roles.

Both roles can be roller coaster rides—but maybe they are different roller coasters in the same amusement park. They are close together but move in distinct patterns and have unique features.

I frequently hear people say, “Dementia is harder on the family than it is on the person.”

I have a few thoughts when people throw this statement at me looking for agreement. Often, it is a family member who makes the statement. They understand their own challenges, but they are less likely to understand the challenges of their loved one with dementia.

To be fair, this is a very human way of looking at things. We get what we do. We get why it’s hard. We get why it’s tiring and frustrating and we know how often we lose patience.

We often don’t understand the challenges of the people right in front of us because we are too busy focusing on negotiating our own.

I see this frequently at the university. Professors think their job is challenging because they are familiar with the daily challenges. Secretaries will tell you their job is more challenging because they see their own daily challenges but not the challenges of professors. Same with administrators. Janitors. Coaches. Public safety officers.

We don’t understand other people’s roles so we don’t know what they heck they are doing all day. We just know that we are busy doing things they don’t have to do. So their job must not be that hard.

Also, why is it a contest? Why are we comparing the struggles of the care partner and the individual living with dementia? Does the person who has it hardest get a medal?

Again, this is a human thing. I frequently hear college students trying to top each other in conversations about how little sleep they got in the last week. If one of my academic colleagues talks about how busy they are, another will chime in to make a case that they are busier.

Why do we make this a contest?

Living with dementia is hard. Being a care partner is hard.

They are both challenging in unique ways–and that’s why I believe it’s important for both groups to have private forums to discuss what they are going through.

(I rewrote the last sentence several times….the first attempt was: That’s why I believe it’s important for both groups to have private forums to complain about each other.)

One of my friends with dementia is in a Facebook group started by someone diagnosed with a type of early onset dementia. The group is designed for individuals diagnosed with early onset dementia. She enjoys the opportunity to get feedback from others with similar challenges.

One day she was frustrated that her husband was dismissing her opinions about which new car they should purchase because he no longer believed she was capable of processing such information. She logged on and wrote a long post where she “bitched up and down” (her words) about her husband. Many people who were also living with dementia chimed in to offer her support and advice. It didn’t change anything about the situation. Yet she felt validated.

About a week later she logged on to read posts in the same Facebook group and saw the administrators had welcomed a new member to the group….her husband. She quickly deleted the previous post. She has no idea if her husband read it or not.

She went to her husband and was honest in explaining that she would prefer he leave the Facebook group so she’d have a private outlet to express herself. He told her that he joined the group to get a better sense of how she was feeling about having dementia.

Her response was, “Then why don’t you ask me?”

He left the group.

The same woman told me that she had been meeting with a few women who also had dementia that she had met through connections at her church. When they learned that the mother of a member of their church had been diagnosed with Alzheimer’s, they invited her as well.

She came to their next coffee date…and sat down at the table beside her husband who apparently thought he would be welcome as well.

He was not welcome, and he was told to come back to pick her up in an hour. Fortunately, he seemed to understand.

I am supportive of communities (online and face-to-face) that allow individuals living with dementia to interact without the “expertise” of their care partners and professionals. No matter who you are and what you’re going through, you want to be around people who get it.

I understand that if I am sitting around with several people who have dementia….I don’t get it. I am the outsider. To think I’m the expert on a condition that they all have but I don’t is pretty arrogant.

This reminds me of a conversation I had with a guy with Alzheimer’s a while back.

“I love my wife, but she doesn’t understand me,” he said.

I took a deep breath and tried to come up with a response.

“A lot of spouses struggle to understand what their partner with dementia is going through,” I said.

He gave me a funny look.

“Oh, it’s not about the dementia. She’s never understood me. It’s mostly because she doesn’t get my need to drink a six pack of beer every night,” he said with a laugh.

That’s another thing about this care partner relationship…it exists in the context of life. The relationship pre-dated the dementia, and the complicating factors of a relationship that have existed for years don’t disappear so people can focus solely on dementia.

If you hadn’t noticed, life doesn’t just give you one problem at a time.

The care partner relationship (whether it be spousal, parent-child, sibling, or even a friendship) can be amazingly beautiful.

But it is like any relationship….

You can love someone but sometimes they just don’t get it.

 

 

When I was in graduate school, I attended an in-depth training so I could volunteer with a hospice. The volunteer coordinator who organized the training, Kathy, was tremendous. She did a great job of making the experience meaningful, interesting, and practical. Somehow she also made it fun. (I have since learned that people who work for hospices tend to have great senses of humor.)

A lot of things that Kathy said impacted me, and I think of this training often even though it was more than 15 years ago. How time flies.

One thing that Kathy said that has really stuck with me was a point she made in reference to fall prevention. She said that if someone started to fall, sometimes it’s better to fall with them than try to keep them upright.

“There’s only place you can’t fall from, and that’s the floor,” she said. “Once you get them to floor, they’re safe from falling.”

I had spent time with nursing home residents before this, and I thought my role if someone might fall was to use every bit of my physical strength to keep them upright. This was a new perspective.

Kathy explained that if you fall with someone and get them safely to the floor, you might need to help getting them back up–but it wasn’t an urgent situation. In fact, she told us matter-of-factly that if one of our hospice patients was on the floor and we couldn’t help them back up, we should call hospice for assistance and just hang out with them on the floor while we waited for back-up.

This seemed like a reasonable strategy compared to trying to fight with every bit of muscle to keep someone upright–especially since I was about 125 pounds at the time (those were the days…holy metabolism) and some of my hospice patients would be much larger.

Kathy explained that often falls are more dangerous when we are physically trying to prevent the fall rather than accepting that person’s body is not able to stay upright. When we accept that a fall is imminent and help someone smoothly transition to the floor without injury, it’s a win.

And that was a revelation for me.

At the time, I found this useful information and applied it when I volunteered in hospice. However, in the years since the training I’ve found that maybe it has broader implications.

We often fight changes in other people when we might be more successful if we accepted that change was coming and became a part of that change. In other words, sometimes we have to fall with someone rather than fight the fall.

A friend of mine, John, whose wife died from Alzheimer’s a few years back, reminded me of this when he explained that the strategies he had used to make himself a college athlete and then a successful businessman were massive failures when he tried to implement them after his wife’s diagnosis.

John was a problem-solver. When there was an issue, he read everything he could get his hands on to fix the problem. And he was a hard worker. It didn’t matter what he had to do. He would go to the end of the earth to be successful. Things always went his way because he made sure they went his way.

With Alzheimer’s, that meant he made appointments at Mayo Clinic–and appointments at other memory centers when Mayo couldn’t “fix” Alzheimer’s. He even checked into a memory clinic in Switzerland before deciding there was little they could offer her. He read online articles about supplements and behavioral interventions that could “cure” the disease. He even sent money (I didn’t ask how much) to a guy online who offered to provide him with a diet plan that would reverse his wife’s symptoms. He convinced himself that if only he did enough research and diligently pursued all possible options, he could “fix” his wife.

In social settings, he worked hard to “cover” for his wife’s symptoms. When she was asked questions, he answered for her. When she did something that didn’t make sense to others, he explained that she was tired or stressed.

Sometimes she would say she was too tired to go to an event. He wouldn’t take no for an answer. He’d insist she attend anyway, even if he had to help her get dressed and blow dry her hair.

He didn’t want to see his wife fall.

He would do whatever it took to keep her upright.

After a couple years, it was his wife who convinced him to change his strategy. She was sick of how fighting Alzheimer’s consumed all their time and energy, and she worried that the fight was exhausting her more than Alzheimer’s itself.

She acknowledged that her disease was progressing, and she wanted John to come with her instead of battling the disease. She knew he was trying to fight the disease, but sometimes it felt like he was fighting her.

John adopted a new strategy. He accepted that her symptoms were getting more noticeable. He realized that she was still the same person she had always been, but he acknowledged the changes in their lives as a result of Alzheimer’s.

When I’m struggling and I confide in someone, you might think I’m asking them to hold me up. But often I’m asking them to fall with me. To break my fall. To hang out with me on the floor until I’m upright again.

There’s a time to fight like hell. But there’s also a time to accept that a fall is inevitable and not fight that fall.

And falling with someone is better than falling alone.