I am working on a presentation for an upcoming dementia conference. The goal of my presentation is to educate family care partners and give them some coping strategies.

I’m either efficient or just lazy because I decided there was no reason to build this presentation from scratch. I have a file on my laptop titled “Dementia Presentation Materials and Stuff.” I opened that file to find about 15 Powerpoint presentations I’ve done for family care partners in the past five or so years.

I decided to take a look at those presentations. On some of them, I used unfortunate fonts, weird color schemes, and lame graphics. (I’m sorry graphic design friends….I used a lot of Comic Sans.)

But I found some common themes from presentation to presentation. In fact, I’m kind of a broken record.

I challenged myself to come up with the ten themes I hit on most frequently when I talk to care partners. I figured this would be a good representation of what I think is important for care partners to know…because it’s stuff I repeatedly talk about. Now I’m thinking about making this into some sort of handout or poster.

And here are those themes:

1–You can’t fix dementia.

I don’t care how much you love someone or how many books you read. It doesn’t matter if you feed them the perfect diet and travel to specialists across the country. At this point in time, we cannot repair the brain after dementia takes hold. So don’t beat yourself up when dementia progresses. You’re not doing anything wrong.

2–Connect; don’t correct.

When we correct someone, we decrease our chances of connecting with them. I know this is tough with family members. In many families (including mine), being right is important. Remind yourself that it’s better to make a connection than to be right.

3–Having dementia is tiring.

We don’t talk enough about the mental fatigue that people with dementia experience. The dementia brain has to work really hard to process information (and information includes…everything…sights, sound, tastes), so it frequently gets exhausted and needs a break.

4–Their reality is just as real to them as your reality is to you.

That guy your mom thinks is standing in the corner? He’s just as real to your mom as your mom is to you. And she might think you’re crazy if you don’t see him.

5–Sometimes a nursing home is the best option out of a bunch of not-great options.

Let go of the guilt. Placing someone in a nursing home isn’t a punishment. I’ve never heard anyone say, “I hate Dad and am looking forward to dropping him off at a nursing home.” If we all had unlimited funds to hire staff and redesign our houses, we could keep people with dementia at home—-but we live in the real word. Sometimes we have to choose a nursing home not because we love the idea but because it’s the best option we’ve got.

6–Dementia isn’t just about memory loss.

The change in personality? The moodiness? The paranoia? That’s not just Grandma being difficult. That’s dementia. Dementia is a constellation of symptoms–one of which is memory loss.

7–Dementia will change your relationships.

Accept that your relationship with the person living with dementia will change. Be flexible. Understand that what worked in your relationship before might not work now. And know that sometimes, in some relationships, some of these changes might be positive.

8–Dementia changes how someone experiences the world.

All the information we have about this world comes from our five senses. Dementia changes how we take in information through sight, touch, smell, taste, and hearing.

9–If you’ve met one person with dementia, you’ve met one person with dementia.

Dementia impacts everyone differently. Some people sleep more. Some people sleep less. Some people can’t stop eating. Some people refuse to eat. You can’t make a prediction about one person with dementia based on the experiences of others with dementia. Your loved one was unique before, and they are still unique.

10–This is a marathon, not a sprint.

If you see sudden changes, they are likely not due to dementia. For better or for worse, dementia tends to be a slow moving beast. That makes is especially important for care partners to take care of themselves.

Stay tuned next week when I talk about the meaning of life. Okay, maybe I don’t really know what the meaning of life is. But I am working on a blog post on dementia and meaningful life.

Oh, and have an awesome Monday!

Let me tell you what I did this weekend.

I traveled with my university’s softball team to an away series.

You’re probably think that this sounds fun…being outside, watching our team hit homeruns, getting to hang out with a great group of young women. You might think it’s awesome I get to travel around and support our student-athletes. You’d be 100% correct.

But let’s look at it this way.

What did I do this weekend?

Well, I rode a bus for four hours to watch 18 to 22 year olds play a game that revolves around a stick and a ball. I even got to help by tracking the number of times each team either swung and missed a ball thrown by them (without hitting it with that stick) or didn’t try to hit the ball when it was deemed hittable by this guy behind the plate that someone hired to make decisions about the game. However, I didn’t get to make a mark on my spreadsheet unless a player did this three times. Why three? I don’t know. I guess two isn’t enough.

And my duties didn’t stop there. Whenever a player hit the ball with the stick and no one caught it before it bounced and they started running, I had to track the number of white squares they touched. If it was more than two, I put a tally under “extra base hits.” Fortunately, I got to make a lot of tallies in this column over the weekend.

I also spend a lot of time cheering when college students put larger balls in circular structures ten feet in the air. And I get excited about college students who run around frantically trying to keep a white ball from touching the floor.

If I think about it too much, I realize that sports are weird. They’re my hobby as well as part of my job at the university. (How lucky am I to say that sometimes is a hobby and also part of my job?) But they are kind of random and bizarre when I overanalyze them and their importance to my own life and to society.

I mean, I was sad for days in March because our men’s basketball team lost a nail-biter at the conference tournament. And yesterday was a great day because four Panther softball players hit home runs.

When if you ask me about what I enjoy doing, one of my first responses might be “watching sports.”

Also at the top of my list is indoor cycling. A studio opened close to our house, and it’s my new jam. I’m usually there once—sometimes twice—a day.

One morning at 6:15 am the instructor said, “I want you to think about why you got up at 6 am to ride a bike going nowhere.”

That was meant to motivate, but it did the opposite for me.

Why AM I on this bike going nowhere?

I started thinking about the 7-10 hours I week I spend on that bike going nowhere each week. Although indoor cycling is great for my health, it’s also kind of a weird way to spend your time if you think about it. Wouldn’t I rather go somewhere than nowhere? And all I’m doing is sitting there on an uncomfortable seat making little circles with my legs.

But that’s how I spend my time.

Sometimes I ask families of those with dementia to tell me what their loved one enjoys doing. Usually I get a retrospective answer.

They enjoyed teaching kindergarten.

They loved to go horseback riding.

They enjoyed baking.

They liked to travel to Europe.

His main hobby was building porches and decks for friends.

I can’t say this information isn’t valuable. It’s great to know where someone has been.

But very few families tell me where their loved one is now.

Sometimes I push the issue a bit. I’ll say, “Tell me what she enjoys doing now.”

Often I get a funny look. They want to tell me about past accomplishments. Maybe there’s a certain pain in looking what the person enjoys now because, for the family, it often indicates loss.

The family members usually think for a few seconds. Then they respond tentatively because they don’t  know if what they are about to tell me is what I’m looking for.

She likes to wander around our house and rearrange things.

She seems to enjoy pacing around the nursing home and asking people about the weather.

She likes coloring.

She seems to like stacking playing cards and unstacking them.

She likes petting her grandson’s stuff animals.

For families, these are not hobbies, things someone enjoys, or ways to spend time.

They are just remnants of a person who used to spend their time in productive ways.

But are these things any different than riding a bike to nowhere or watching college students try to hit balls with sticks? Are their hobbies less meaningful than my hobbies?Can I say—without a doubt—that the way they spend their time is less valuable than the way I spend my time?

I can’t.

I’m not the universal judge of hobbies. There really aren’t any bad hobbies, unless maybe your main hobby is cooking meth or you consider drinking a twelve pack of Coors Light each night to be a hobby.

Maybe hobbies, like beauty, are in the eye of the beholder.

Why not, instead of disregarding what individuals with dementia enjoy doing, appreciate and encourage any new hobbies even if they seem like useless ways to spend time to us. After all, we all spend our time in ways others would label useless.

It’s not up to us to judge other people’s hobbies—whether or not those people have dementia. Maybe their hobbies aren’t our cup of tea. Maybe they seem trivial. Or just not enjoyable.

But we owe it to the people we love to support their hobbies, whether or not we understand them.

A nursing home administrator was giving me a quick tour of her facility after I did some education for employees. A sign outside a resident room caught my eye. It read:

1. Tell Mom that they are billing Frank (my uncle) for her meals.
2. Tell Mom that Dad is at Home Depot.

The signature at the bottom was “The Family.”

It was written in messy cursive and the edges were tattered. It looks like it had been posted for quite a while. I asked about it.

The administrator explained that the resident, who I will call Lynn, had Parkinson’s disease with dementia. She tended to be obsessed with two topics: 1) to whom she should write a check for her meals, and 2) where her husband was.

From the time she moved into the nursing home, Lynn was worried about how to pay for her meals. She would tell her family and staff that she never got the bill for her dinner and was worried because she hadn’t paid. It was not uncommon for Lynn to have so much anxiety about this that she would cry. At one point, she was trying to give her jewelry to the dietary staff because she couldn’t find her checkbook to pay.

At first, they tried to tell her that the meals were free. But then she become focused on where she should send a thank you note. If they told her that she had already paid for the meals, Lynn would worry because she didn’t remember writing a check….and she wasn’t sure if she had that much money in her account. She wanted to know how many meals she had paid for and when she’d have to pay again. She got upset when no one could tell her.

Finally, her daughter figured out the solution. Lynn had a rich brother named Frank. Despite having a lot of money, Lynn was always critical of Frank because he never paid for anything. Because of this, they hadn’t spoken in over a decade. They family wasn’t even certain that Frank was still alive.

One day Lynn started asking for her checkbook and insisting she write a check to someone for her meals. Her daughter, without thinking, said, “They’re billing Frank.”

Lynn loved this. It became the standard response for family family and staff. She usually responded with something like, “It’s about time that old bastard paid for something. Send him my doctor’s bill, too!”

Lynn’s other stressor was locating her husband. She would insist that he said he would be there to pick her up. She worried that perhaps he had fallen ill or gotten in a car accident. She would stare out her window for hours–refusing to participate in activities while waiting for a husband who passed away years ago. It was heartbreaking.

At first, her family would remind her that her husband had died. She would be upset that he had passed away, but even more upset that she hadn’t been at the funeral.

“Who misses their own husband’s funeral?” she would ask, often in tears. “Everyone must think I’m terrible.”

They would remind her she was at the funeral. At times, they even showed her family photos taken at the funeral. She would argue that the photos were taken at family weddings.

Her family said that their reminder about her husband being gone was “gentle.” I would argue that there’s really no way to gently tell someone their spouse is dead….whether that death occurred yesterday or ten years ago.

Without intention, they were inflicting pain on Lynn. And the pain they were inflicting was without purpose. She would ask about her husband again within an hour. It was like giving someone a shot with a giant needle–but not injecting any medication. What was the point?

Her family realized this in time. Her daughter started saying Lynn’s husband was at Home Depot.

Why Home Depot? I guess that’s where he spent a lot of time. It was a family joke that Lynn’s husband could wander around Home Depot for hours, and he always came home with bags of unnecessary tools he would ever use. He was a great shopper but a poor handyman.

When told her husband was at Home Depot, Lynn would throw back her head and laugh.

“I should have known!” she’d say.

Her family realized that the two “rules” that they posted were key in reducing their mother’s stress. Telling the truth was only increasing her anxiety. Coming up with a standard response that alleviated their mom’s worry (and even brought her joy) made visits so much more enjoyable for everyone.

It was at a care conference that her daughter asked the staff, “How come no one told us it was okay to lie?”

I try not to use the word “lie.” I more frequently use “step into their world” or “therapeutic fib.” People tend to be more comfortable with euphemisms, right? I mean, that’s why we have euphemisms.

We prefer to say people “pass away” rather than die. We think it’s more polite to tell people we were “sick to our stomach” than to say we vomited. We prefer to say employees were “let go” rather than fired.

We shy away from harsh and blunt language in favor of something more sanitized.

And many people shudder at the thought that they are liars….even if lying is the best possible strategy in a situation that isn’t ideal.

The reality is that we are taught to feel guilty about lying. Honesty is one of the best qualities in a human being. Above all, good people always tell the truth.

When I was a teenager, I would have said the only acceptable reason to lie would involve an elaborate set-up for a surprise birthday party. In fact, I went through a stage in early adolescence where wondered how it was ethical for parents to lie to their children about Santa (and the Easter Bunny and the Tooth Fairy) but then punish their kids if they caught them in a lie.

Lying was wrong. Black and white. Liars not only got sent to their room and punished but also took a step closer to hell. The truth was always the way. You couldn’t have a positive relationship with someone if you weren’t honest.

But sometimes the simplest and most straightforward rules change. Maybe honesty isn’t always the best policy. Maybe it’s the best policy most of the time.

And sometimes you find yourself lying to the same person who taught you to tell the truth.

Because you love them.

Because you don’t want them to stress that they’ve been stealing meals.

Because you don’t want them to worry about why their husband is late.

Because sometimes dementia changes the rules of relationships.

And we adjust.

Recently someone told me that they stopped visiting their grandma in the nursing home because she doesn’t remember the visits anyway.

Perhaps she doesn’t. Maybe she can’t recall you were there five minutes after you left. There’s a chance she’s going to tell the staff at the nursing home that no one ever visits her–when she often has multiple visitors in one day. So…what’s the point? Why waste your time?

But let’s back up.

Did you have a first birthday party? I bet you did. Do you remember it? I’m guessing you don’t.

Your parents knew you wouldn’t remember it. Yet they still bothered to buy you gifts and a maybe a special little round cake that they allowed you to put your hands it. You probably made a mess and everyone laughed. I’m guessing you had fun.

But you don’t remember it?

I guess there was no point in that first birthday party, huh?

Is the only reason to do something to create a memory? Or is there value in the moment itself?

Sometimes I wonder if the universe put people living with dementia in my life to help me grow as a person.

You see, I’m not good at living in the moment.

The other day I was overanalyzing a social interaction that happened twenty years ago. Literally twenty years ago.

And today I was stressed out about where people are going to park at a conference I’m organizing….the conference is four months away.

I live in the past. I live in the future. I don’t spend enough time in the present.

I was recently visiting a nursing home to do a staff education when I struck up a conversation with a resident and her daughter.

I asked how their day was going. I appreciated how the daughter was comfortable in the silence of waiting her mother to respond rather than answering the question herself.

“Well, I’m not sure what we’ve been doing, but we’ve sure been having fun,” the older woman responded.

Her daughter smiled. She didn’t chime in with what they had been doing all day. It didn’t matter. They’d been having fun. There wasn’t a need for more details.

Every once in a while, my husband says I’m being an Eeyore. And he’s usually right. But I’m trying to be more of a Pooh.

“What day is it?” asked Pooh.

“It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.

Today might be Monday, but that’s okay.

It’s my favorite day–because it’s the only day I’ve got today.

There will be no blog post this week because I’m on spring break! I’ll be back next Monday, friends!

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.