Often we look at a group of people and think they’re all the same.

For instance, I say I’m a college professor and people immediately roll their eyes and tell me how self-centered and immature college students are. They tell me they never put down their phones and are ill-prepared for life after school. Does that description fit some of my college students? Absolutely. Does it fit all of them? Nope. (And, to be fair, I’m 40 and have been accused of never putting down my phone. I know 60-year-olds who have been accused of the same offense.)

When I say I’m a gerontologist, people start groaning about old people. They tell me they’re grumpy and closed-minded. I do know plenty of grumpy, closed-minded old people, but I know plenty of grumpy, closed-minded young people as well. And I find many older adults to be pleasant, open to change, and accepting of diversity.

And I find that we make assumptions based on a person’s status as an individual living with dementia. When I ask groups to estimate what percentage of individuals diagnosed with a dementia live in a nursing home, they usually say something in the ballpark of about 80%. In fact, only about 20-30% of individuals with a dementia live in a nursing home at a given time. Many only live at a nursing home for a short time at the end of their journey with dementia.

So where do people with dementia live? They live in the community with their families. They may live alone. They live in retirement communities, assisted livings, and nursing homes. Unfortunately, some are homeless. I know one guy who has dementia who doesn’t have a “rooted” home but rather travels across the country with his wife in an RV. They plan to do so until they can’t do so anymore. And good for them.

Many people with dementia are married to someone of the opposite-sex. Some have a same-sex spouse. (I talked to a woman once who referred to her same-sex partner “Teri” as “he” in her caregiver support group because she questioned what type of response she would receive if the group knew she was gay. Finally, she decided to tell them she was gay. No one cared.) Some have a partner but are not legally married. Many have lost a spouse to death. Some have children, and some don’t.

We think dementia is about old people, and age does increase your dementia risk. However, I know individuals in their 40’s living with dementia. Their families tell me it’s a struggle because people say they don’t “look like they have dementia.” Ummmm….what does someone who has dementia look like?

Some people with dementia work. Many volunteer for various causes. Some have money which provides more options as they need more care. Some are barely scraping by. They may or may not be on Medicare or Medicaid.

They have diverse hobbies. It’s common to have to modify or give up some hobbies as dementia progresses, but I know people with dementia who do woodworking, cycling, step aerobics, bird watching, and crafting. I know a woman with younger-onset Alzheimer’s who identifies her favorite hobby as shoe shopping. Her (somewhat morbid) joke to her husband is that she hopes to live long enough to wear all the shoes she buys.

People with dementia watch all sorts of stuff on TV–sitcoms, soap operas, news, sports…I once went to a support group to speak to caregivers. The daughter of a woman with Alzheimer’s came up to me before I talked to say she’d be leaving early. She had to get home in time to watch The Bachelor with her mom. It was their favorite show. So, yes, people with dementia watch The Bachelor.

You may think these are silly points, and maybe they are. But somehow we forget that people living with dementia are just as diverse as the rest of us.

Sometimes I do it, as well. A couple months ago, I met a person who was transgender and had dementia. (The assisted living she had just moved into was struggling with this for several reasons.) This was the first time I met someone that was transgender and diagnosed with a dementia…that I know of. I know it’s not a rare situation, but it took me a few moments to process. Then I remember thinking to myself, “Why wouldn’t someone who is trans have dementia?”

There are institutions that discriminate based on race, sex, gender identity, sexual orientation, and religion. However, dementia is kind enough to include all of us.

When I say dementia, people picture a drooling old lady sitting at a nursing home staring out the window blankly. I know people with dementia who have that blank stare. I know people at the end of stage of the disease process who are bed bound and unresponsive. They no longer have control of their bladder and bowels. They need assistance with all of their activities of daily living. I also know people who are earlier in the disease process who go for two hour hikes, ride bikes, have engaging conversations, and enjoy an evening at the casino.

I don’t assume that only old, white, straight people get dementia. I don’t assume that people with dementia all like the same music, TV shows, and movies. I don’t assume that they all support Trump–or don’t support Trump. When someone tells me their loved one has dementia, I can’t assume much of anything.

I don’t even assume that they have the same dementia symptoms.

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

Even in Dementialand, we are all unique human beings.

Last week I had a unique speaking engagement. Sure, it was the normal stuff I talk about…but the setting was different. I spoke in the town where I spent the majority of my formative years. It was a great opportunity to show them that I’ve finally ditched that middle school mullet for good.

Two of my former teachers were in attendance. I had a strange fear they’d go home thinking that they had wasted nine months teaching someone who never dropped the habit of saying “um” after each sentence and who got off on so many tangents that her Powerpoint seemed irrelevant.

However, after the presentation it was an old friend of my mother’s that asked a question for which I had no good answer.

She had heard the woman who introduced me mention my blog, and she asked, “So what exactly is the purpose of this blog thing?”

The purpose of this blog thing…

I have no idea.

There was not a lot of foresight when I started this blog. I mean, I’m lucky if I get my laundry put away within a week of getting it out of the dryer. I never get gas in my car until the display tells me I have fewer than 10 miles left. (I’m not joking or even exaggerating on that. It’s often down to 2-3 miles.) To tell you I had laid out the purpose, vision, or target audience of this blog when I started out would be a lie of epic proportions.

At times, I’ve thought my target audience was caregivers. However, I also sometimes write for the general public–hoping to increase awareness of Alzheimer’s and related dementias. (Caregivers are usually already pretty aware of dementia…)

And sometimes I hope my posts are an encouragement to people living with dementia. I want them to know I see them, and I see the challenges they work so hard to overcome every single day.

If your neighbor has dementia, I want you to read my blog so you understand why they do the things they do. No, they aren’t weird. And they’re not trying to annoy you. They have dementia. I want you to say, “I have a better idea of what they are going through. I’m gonna be a little more understanding and a little less judgmental.”

If you are a caregiver, I hope that you’ve read my blog and gained more of an understanding of what your loved one with dementia is experiencing. Sure, you’re a team. But you really are on two unique journeys. Having dementia and caring for someone living with dementia are both challenging, but the challenges are not the same. You don’t entirely get them. And, to be fair, they don’t understand what it’s like to be the caregiver.

If you’ve never met anyone with dementia….first of all, maybe you’re just not paying attention. People with dementia are living life–hanging out at restaurants, stores, movies, and yoga classes. They do not walk around with big “D’s” on their foreheads to designate their status. You may notice small things…maybe they take a little longer to get their cash sorted to pay the tab. Perhaps they get turned around in the store and struggle to locate the front door. And at those times, a smile rather than a look of judgment and annoyance can make a big difference.

I was once at a big conference in Washington, DC. I ended up at what I call a “mingly” event and did my best to make my awkward self be social. I was sitting at a table with some bright young academics, all of whom were just finishing up their PhDs, who had enjoyed a few beers each.

They were talking about career goals.

The first guy said something like, “Well, obviously, I want to be on the team that finds the cure for Alzheimer’s.”

The second guy said something like, “I’ll be thrilled if this drug we are testing is shown to slow the progress of the disease.”

I felt really small. I just kept sipping my wine and acting impressed (which I was) at the ambition of these bright young people. I hoped they wouldn’t ask me too many questions about my work in the field.

I know they say you can do whatever you want in life if you set your mind to it. But I disagree. There are lots of things I will never do–even if I work my butt off. I will never be an Olympic figure skater. I will never sing be invited to sing the national anthem at a major sporting event (although I’m not sure I could do worse than Fergie). I will never run a mile in under 5 minutes. And I will never find a cure for Alzheimer’s–or any other dementias for that matter.

I might as well have been sitting at a table of Nobel Prize winners.

There’s nothing wrong with not being the person who has the skills to cure diseases and development new drug treatments. But there are times we question whether what we do matters when we compare it to the impactful work of others. They are times we ask ourselves whether we really make a difference. And we have to search for the meaning in what we do. This was one of those times for me.

For a long time, I have felt that this field is focused on finding a cure or prevention method–which is a valid and important goal–but has not been focused enough on improving life for those who currently have a condition that causes dementia. When we talk about people who live with dementia in 2018, we often do it to point out how many there are, how expensive their care is, and how we hope that these individuals with diseases that cause dementias do not exist in the future. We want to end dementia. But what about those who get up everyday and negotiate the challenges dementia presents?

So back to the purpose of this blog thing….

It’s about understanding.

Most people you encounter are having a harder time than you think they are.

When we understand people and the challenges they must negotiate, we tend to be just a little bit kinder.

So that’s it. I want you to understand a little more so you’re less likely to lose your cool and more likely to offer a smile.

To my readers that live with dementia, understand that it’s not easy for your family and caregiving team. I’m not saying it’s harder on them than you. In fact, I hate it when people say dementia is really harder on the family. But know that it’s tough for them. And when you’re about to snap, do your best to take a deep breath.

If you have a family, friend, or neighbor with dementia, I want you understand a little more about what it’s like to have dementia. You’ll never fully get it (unless you have dementia someday, and I hope you don’t) and that’s okay. But the more you know, the more likely you’ll be to shrug something off rather than get frustrated. And that person with dementia isn’t giving you a hard time. They are having a hard time. Please understand that.

If you are someone who reads my blog even though you have no personal connection to dementia (and I’m sure this is a total of about 5 people–maybe some ex-boyfriends from grad school who are snooping to figure out what I’m up to nowadays), understand that most people with dementia live at home, in the community, like the rest of us, for the majority of the years after their diagnosis.

You might not know who has dementia, but when you see someone struggling for any reason, understand that a kind smile goes a long way. Swallow your judgement and realize you probably aren’t really in that big of a hurry anyway. (I hope I’m not coming off as preachy…I admit that I am not as patient and understanding as I could be at times. We are all works in progress, right?)

So the purpose of my blog:

I want to help people understand each other because with understanding comes kindness.

And this world could use a little bit more kindness.

When we bought a new vehicle a while back, it came with a free subscription to Sirius XM radio. Although we were too cheap to pay for a subscription when the free subscription expired, we enjoyed the variety of talk radio it allowed us to access.

My favorite was Doctor Radio. After quite a few work road trips, I started to think I was quite the expert in plastic surgery, oncology, and truck driver urinary health. Believe it or not, there was a whole program on the latter. It was fascinating.

But it was a show featuring a general practitioner that really got me thinking….

Someone called in and asked what he’d recommend as a cough suppressant.

His response was, “Why would you want to suppress a cough?”

Coughing, like vomiting, means there is something in you that needs to get out immediately. Why would you want to stop it from exiting?

The doctor went on to say that there are times when you can justify the use of a cough suppressant–if you are going to give a presentation or be in a play, for example–but we should really think about the logic behind taking it whenever we start hacking. (I will also add, although the doctor didn’t say it, that it’s no fun to be exhausted after a night of being kept up by a cough.)

Individuals with later stage dementia often have a decreased cough reflex. That seems like no big deal, but it really matters.

You know when something goes “down the wrong tube,” as people often say? The other day I was chugging water from my water bottle while driving home from work. I hadn’t done a great job keeping up on my hydration during the day, so perhaps my chugging to catch up was a bit too enthusiastic. I ended up coughing up water all over the windshield.

And I continued to cough..and cough…I was contemplating whether or not I should pull over when I finally got myself together. (I mean, coughing explosively while driving has to be at least as dangerous as texting while driving.)

While I was annoyed at the explosiveness of my cough, it’s a good thing. My body knew the water was where it shouldn’t be–so it expelled it.

A cough begins when the nerves of the respiratory system are stimulated either chemically or mechanically. A message is then sent to the respiratory muscles instructing them to contract in a way that forces the body to expel the irritant with a force of air. Our bodies work hard to keep our lungs and lower respiratory systems free from microorganisms. When the mechanism that triggers the cough is no longer active, we run into problems like aspiration, respiratory infection, and pneumonia. And those are big, sometimes life-threatening, problems.

In short, coughing protects our airways and lungs. When our bodies lack the ability to cough as needed, there are often dire consequences.

As dementia progress to the later stages, individuals lose the ability to cough when they need to clear their throats, when food or liquid ends up in the trachea, or when they have a build up of mucus. That message that is sent to the respiratory muscles to tell them to contract? Their brain loses the ability to convey it. And, yes, this can contribute to the death of someone with dementia–rather suddenly or over time.

We still think dementia is all about forgetfulness. We think it’s about memory. Sure, loss of memory can be one piece of dementia. For many individuals with certain types of dementia like Alzheimer’s, memory deficits may be the first symptom noticed by family and friends. But it’s not all about memory.

I wish we saw dementia as brain failure in the same way that we view heart failure. In many cases, it’s a slow and drawn out process… I know people who have been living with dementia for 15 years and continue to live with a positive quality of life, but dementia is progressive and fatal.

The brain is the control center for the body. I could give you a list of body functions that are controlled by the brain…but I’d have to list ALL body functions. Coughing. Swallowing. Bowel and bladder control. Walking (or any purposeful muscle control). The brain cannot be severely damaged without an impact on the body as a whole. Our brains and the remainder of the body are not separable. There is a point at which dementia compromises the brain so significantly that the body cannot sustain life.

For some, this point comes a couple years after diagnosis. For others, it may not be for a decade or more. Many people live and live well after learning they have Alzheimer’s, Lewy-Body, Frontotemporal, or another type of dementia.

However, I have realized that fundraising is dependent on making the general public aware that dementia isn’t just about old people becoming annoying forgetful. It’s not about Grandma mixing up her grandkids or Grandpa telling the same story five times in an hour.

This is about brain failure.

Considering that your brain is the control center for everything you do, brain failure is a big deal.

And the next time you have a cough, be thankful for that cough.

It’s Sunday night and I’m sitting in a hotel room watching pairs ice dancing. (Twizzle twizzle twizzle.)

I am traveling for work. I woke up this morning knowing I had a five hour drive ahead of me.

When I drive somewhere, I usually challenge myself to make it to my destination as quickly as possible. I pride myself in not taking a lot of bathroom breaks. I don’t get gas until running out of gas is a real possibility. When I get to where I’m going, I’m usually not in a pleasant mood.

For some reason, I decided to play it differently today. I told myself that I would stop–not only when I had to–but just because. I didn’t have to be at the hotel by a certain time, so I made a conscious effort to look for interesting places along the way.

I ended up at a small winery in a quaint Illinois town. (I just ended up there. It just happened. Like a moth to a flame.) And they convinced me to a wine tasting. (It took a lot of persuasion.) I left the winery with $65 worth of wine and a recommendation for a café down the street where I could get a salad.

Over the past couple of years, I’ve gotten much more comfortable eating out alone. Table for one. No, I’m not weird. Yes, I have friends. But today I am eating by myself. And I’m cool with it.

Yet there’s sometimes a moment when you walk into a restaurant and the host looks behind you–expecting someone to be following you. No, buddy, it’s just me.

And then he asks, “Are you meeting someone?”

Today my off-the-cuff response was, “Just you, my new friend.”

He didn’t seem humored.

He told me he could seat me in an empty section of the restaurant or at the bar. I chose to sit in the empty section of the restaurant where a large TV was showing Olympic ski jumping (not the kind where they try to jump far–the kind where they do lots of flips).

In a few minutes, two women walked in and were seated next to me. I guessed them to be sisters, and I would guess they were in their 70’s.

Let me insert a statement here: If you ever travel by yourself and hang out at restaurants, airports, or other locations solo, you may notice that you pay much closer attention to the strangers around you than you would if you were with another person.

When I’m alone, I often find myself making up hypothetical stories about the people I see, their backgrounds, and their relationships. I admit that–while part of the story I’m about to tell you is based on what I objectively observed–part of it is based on my own perceptions and ideas of what might have been happening.

Here’s what I noticed: One of the women did several things that made me wonder if she had dementia. For instance, she was served coffee with cream and sugar on the side. She took the sugar packets, opened them, and sprinkled them directly onto the table. She peeled open the cream, and she poured it into the saucer rather than the cup of coffee. Her sister didn’t correct her. They just continued chatting pleasantly. And laughing a lot.

She asked her sister the same question repeatedly–“When are the boys coming back?” Her sister responded in the same tone each time–“They’ll be home after dinner.” If you weren’t paying close attention, her lack of annoyance at repeating her response would make you doubt it was the exact same question each and every time.

(In case you are wondering, I was being subtle in my observation. I wasn’t being that much of a creeper. I hope.)

Before the waitress came to get their lunch order, the sister said she needed to use the restroom, but I noticed she didn’t actually go to the restroom. She walked up to the bar and had a quick chat with the waitress.

When the waitress came to take their order, the sister (who had just spoken to the waitress) ordered a specific salad off the list of salads on the menu. The second woman (who seemed a bit flustered) just said she’d like a “salad.” I expected the waitress to respond with questions about the type of salad she’d like, the dressing, etc. But she didn’t. It occurred to me that the first woman had already spoken to the waitress about their order.

The Winter Olympics continued on the large TV above us. Every time someone on skis flew up in the air, the woman would say “Oh, dear God” and laugh. They had a silly (and fun) conversation about whether or not their husbands would allow them to take up ski jumping and what injury was most likely to occur if they did try out for Olympic ski jumping. Broken neck, they both decided.

If I had been dining with a group, I would have never noticed that the woman was showing signs of dementia. On this particularly day, I couldn’t help but think they were two sisters out for lunch…with dementia in the backseat.

In full disclosure, I modified this analogy from something I heard on one of my favorite podcasts, The Hilarious World of Depression. At one point, they had a discussion about how people with depression always have depression…but sometimes it’s in the front seat when you’re driving and tries to take the wheel and steer you into the median. And sometimes it sits in the backseat. In the backseat, it’s quiet and unassuming, but if you look in the rearview mirror, you can see it hanging out back there.

I know a lot of people with dementia and their caregivers. I understand that there are days that dementia steals. They make a plan, and dementia doesn’t allow it to happen. Dementia causes them frustration, annoyance, and misery. Dementia is cruel, and sometimes, no matter what you do, it wins the day. You just can’t keep it out of the front seat.

But watching these two sisters having lunch on a cool but sunny Sunday in a quaint downtown, I was reminded of something that I often forget…that sometimes dementia takes a backseat. One of these sisters seemed to have dementia, but that wasn’t the focus today for them. They were just two sisters out for lunch. Sure, dementia was there, too. But it wasn’t about dementia.

I talk a lot about challenges of dementia. In my role, I tend to focus more on end stage dementia. I get asked for input on solving “problems.” And I spend my time and efforts to advocate for policy that benefits individuals living with dementia and their carers. To make my point, I talk about how dementia is brutal and life-changing.

And I forget that life after dementia is life.

There are so many people living (yes, living) with dementia, just like the woman I saw at the café. They get up everyday and do life things, like watching ski jumping and eating salad and window shopping on Main Street, just like the sisters did after they left the café.

And there are many friends and family members who support those living with dementia–and don’t make comments if they sprinkle sugar on the table instead of in their coffee…because who cares anyway? And they answer the same question repeatedly in the exact same tone of voice each time–without even an ounce of frustration. They might even tip off the waitress that their dining companion has dementia to make the process of ordering a bit simpler.

There may be a day in the future when this woman isn’t able to eat out with her sister. But today wasn’t that day.

If you want to argue with me about religion, I’m likely to tell you that we should agree to disagree.

If you don’t like my views on politics, I’ll just walk away.

I don’t engage in Facebook arguments. I’ll just unfollow you.

But if you want to question my views on doll therapy for those living with dementia, you’d better be ready for a fight.

Fair warning: If you are a blog subscriber and are opening your email first thing on a Monday morning to skim my post, do yourself a favor and go get some coffee first. I have a lot to say, and I don’t want you to have to endure it uncaffeinated.

There are some people who don’t think we should give people with dementia baby dolls. They think it’s demeaning. They think it takes away their dignity. They worry that we are treating adults like children.

I disagree.

I think it gives them something important–a sense of purpose.

Let me back up a bit.

I am fascinated by issues of gender and society. And this fascination plays into why the baby doll topic interests me. In my years of visiting memory care communities, I’ve never seen a guy with dementia carrying around a doll. Yet, women caring for their babies is a common sight.

When I talk about dolls at in-services, I ask staff if they’ve ever had a man who took an interest in a doll. I can only remember one instance when they responded positively. In that case, a facility had a guy who would pick up a baby doll, shove it in the face of a female resident, and say something like, “You need to change her. I’m tired.”

My thought (and it doesn’t take a genius to figure this out) is that women are interested in the dolls because the dolls allow them to recreate a time in their life when they felt much purpose–a time when they were the mother of an infant. If you ask most mothers their primary purpose in life, even after their children have left the home, it’s to be mother. Giving a mother a doll is giving her something that dementia has stolen…a sense of purpose…a reason for being…a feeling of making a difference.

I believe that people, no matter where they are in life, need a purpose.

I also ask staff if they’ve ever had a woman who was interested in the dolls who had not been a mother in her lifetime. They always seem unsure of the answer. That uncertainty comes from working with a generation where the vast majority of women were mothers.

But what about my generation? Fewer of us are mothers. I am not a mother, and I often wonder if someday I will sit in a memory community rocking my baby to sleep. Having never defined myself as a mother, I struggle to see it.

I wonder if they can give me a real-looking dog that I can walk, feed, and train. I am half-joking when I say this, but I have derived a great sense of purpose from the rescue dogs my husband and I have taken in and cared for (even as they get old and frail). If I’m lost in this world and need to feel like I matter, a dog might be just the thing.

(Or…If I find myself living with dementia in memory care someday, I will perceive that I am there to do an in-service for staff and give them lectures on working with people who have dementia. Wrap your brain around that.)

As for men….they seem to take little interest in the dolls even if they were fathers. Of course, this could be a generational thing. The fathers in my generation are more involved in hands-on care than fathers of the past. I’m proud to say I know a handful of stay-at-home dads.

One came to speak to my college students a few years ago. A student in the front row asked, “So did you get fired?”

When he explained that he had chosen to quit his job and care for kids full-time, the majority of my students looked suspicious.

So maybe we haven’t reached total acceptance yet…but stay-at-home dads are not as few and far between as they used to be. Will those stay-at-home dads be carrying their babies around in memory care communities in forty years?

To those who think the use of doll therapy is degrading, I make the case that it can be effective in improving quality of life.

One woman at a local nursing home was often agitated with employees to the point that she would verbally insult them. They had tried several different drugs to calm her anxiety. Then someone gave her a baby doll. When she attached to it, they even put a crib by her bed. She became gentler, calmer, less stressed…she stopped yelling at people because (shhhhhhh) the baby was sleeping. In the past, they had trouble getting her to sleep at night. Now she laid down by her baby at night and was out like a light.

I’ve seen female residents connect over the babies. What’s your baby’s name? Awww. How old is she? Oh my goodness. She’s adorable. Conversations that would have never been started without a baby to coo.

Once I saw two residents with dementia connect over the baby that one of them was burping. One of the women spent a few minutes talking about how cute the baby was, how little its toes and fingers were, and the tiny stocking cap it was wearing.

As she wrapped up the conversation, she turned to me and whispered in confidence, “That woman has that Alzheimer’s and thinks that baby is real. But I know it’s just a doll. That or a dead baby.”

I couldn’t help but let out just a tiny chuckle.

“Do you think dead babies are funny?” the woman asked me. I assured her that I definitely did not think dead babies are funny.

Here’s the rule on doll therapy. If a person with dementia thinks it’s a real baby, it is a real baby. And you will treat it as such.

I’ve seen a nurse’s aide take a woman’s baby and throw (yes, throw) it on her bed as the woman was taken for dinner. The woman watched in horror as you would expect from someone watching her baby be thrown across the room.

I wish I had stopped to explain the rule to this nurse’s aide, but I just glared at him. I’m really good at figuring out the perfect response to a situation…about twenty minutes after that situation has passed.

That scene continues to weigh on my mind. I have plenty of friends with infants. I can imagine that they would be beyond frightened and angry if a guy took their baby and deliberately threw it. Then imagine that guy removing them from the room and leaving the baby all alone. Why would this woman with dementia feel any differently?

Yes. That’s a rhetorical question. The answer is that she wouldn’t feel any differently. A baby is a baby is a baby.

As dementia progresses, I tell people they must step into the world of the individual with dementia. That means treating a baby like a baby. Many nursing homes and memory care facilities have set up nurseries with cribs.

Let me be clear in saying that doll therapy does not stop or slow the progression of dementia symptoms. However, there is some research (e.g, Braden & Gaspar, 2015; Ng et al., 2017; Shin, 2015) that shows it decreases aggression, obsessive behaviors, negative mood, and wandering. There’s also evidence that it increases social interactions.

I do understand the objections to doll therapy. I get that may be difficult for some families to accept. I know that some people think it’s undignified and disrespectful.

To me, dignity and respect are about supporting a person in their reality without judgment. Their reality is just as reality to them as your reality is to you. And if that reality includes a baby that gives them a sense of purpose and a reason for being, it means you treat that baby like a baby.

“Memories warm you up from the inside.”

This was written in fancy cursive on the wall of a memory care community that had invited me to do a staff in-service.

I’m not sure who decided this was a great quote to post on the wall in such a setting. I’d like to ask them about their reasoning. I’d probably start with something gentle like, “What the hell were you thinking?” (You know, because I’m so tactful with my words.)

What if a chemo infusion center decided to display a quote about how a woman’s hair is her glory? Or a school for the deaf posted a quote about the beauty of music?

I know the quote I saw at the memory care community was not intended to be cruel, but it almost seemed like a taunt.

I think a lot about the importance of memories. And what’s left when they are gone.

A couple weeks ago I sat down to talk to a delightful woman who has dementia. She was living in the memory care portion of an assisted living. She sat cradling a real-looking baby doll. She seemed to think the baby doll was a human baby, but she was adamant that it wasn’t her baby.

She wanted to tell me about her kids. She said she had three children. A few minutes later, she told me she had eight children. At one point, she mentioned that her mom was watching one across town so she could go to work. Then she told me all her kids were grown.

She asked me if I had kids. When I told her that I did not, she told me that she didn’t have any kids either. She was just too busy these days, so she had given them away to a librarian when she returned her library books.

The scattered and jumbled nature of this conversation was overshadowed by her warmth and kindness. It didn’t matter that what she said made little sense. I will take an illogical and positive conversation over a logical and negative one anytime. I could’ve talked to her all day.

Then she said something that struck me as ironic. And sad.

She put her hand on my hand, looked me in the eye, and whispered, “When you’re old like me, all you’ve got is your memories.”

There was something depressing about this woman stating that all she had was something that she really didn’t have at all.

So I started thinking about what she did have. She had just connected with me–a stranger–and we both smiled and laughed throughout the conversation. I’d never met her before, so our connection wasn’t based on memory. It was just two human beings connecting in a moment. This wasn’t dependent on history, and we made no plans for the future. It was about the “now.” She had that.

A staff member had shared with me that this woman was a joy to the entire facility. She didn’t need memory to make a positive difference to employees and fellow residents.

The same staff member later told me that this woman had two children but both had passed away as teenagers. When she first moved in, she often tearfully brought up her children who had died. In the past several months, she seemed to have forgotten that her children had passed away.

Dementia doesn’t give too many gifts, but this is one….People may lose the bad memories along with the good. (And if they do, please do not continually reintroduce those bad memories.)

Maybe she didn’t have her memories, and perhaps this had provided her some relief after years of struggling with the loss of her children. I’m not saying losing your memories is a good thing. It’s obviously not something I would wish for myself, my friends, or even my enemies. But if you have to lose your good memories, you should get to ditch those memories that cause you pain.

I recently came across the following quote:

“Nothing is ever really lost to us as long as we remember it.” –L.M. Montgomery

But what if we don’t remember it? Is it then lost?

I don’t believe it is. I don’t believe anything is ever lost–because it happened. And it shaped our life and the lives of those around us. Forgetting what happened doesn’t negate that.

There is a reason I am drawn to this field. It’s because people living with dementia have a lot to teach me.

I focus too much on the past. Did what I said at that important meeting come off as stupid? What happened to that girl that I was kind of mean to in the seventh grade? Why did I date that one guy for so long when I knew he didn’t value me?

I also focus too much on the future. How am I going to get that university report done on time? Will those wrinkles around my eyes get more pronounced in the next five years? What if I take my old jeans to Goodwill because I lost ten pounds but then I regain those ten pounds?

You know what I don’t focus on nearly enough? The present…the now…the in-the-moment. I can rarely be completely in the present. I have a long way to go in my efforts to enjoy the moment.

But sometimes I come across someone with dementia that reminds me that the present is a pretty good place to be. When you don’t recall your past and you don’t have the foresight to think about the future, you reside in the present. And sometimes I am amazed at the joy to be found there.

I should hang out in the present more often.

Maybe memories can warm you up from the inside, but so can a spontaneous, friendly conversation where two people are connected in the “now.” I can’t say memories aren’t important, but I am in awe at how much people still have to give when their memories fade.

My husband and I were out to eat. We were at an upscale joint where margaritas cost $12 and you’re expected to not wear jeans. The child at the next table, who looked to be two or three years old, was not having a great time.

His parents were repeatedly telling him to eat his pasta, which didn’t seem to appeal to him in the least. They told him to sit still about 800 times. At one point I heard his mom say, “You are embarrassing me here.” And then his dad pulled out the dreaded, “Do you wanna go to time out corner when we get home?”

I’m going to defend the kid here. They brought a small child to a fancy restaurant and expected him to behave flawlessly. Is that really realistic? Should he have been put in that situation and subjected to scolding when he couldn’t behave? Is sitting still for an hour at a restaurant something a little kid is even capable of?

He wasn’t set up for success.

We don’t have kids, but we do have dogs. And one of our dogs doesn’t do well with kids. Gus-Gus is a homely 12-year-old mutt that we intercepted many years when a family member planned to take him to shelter. On so many levels, he’s a perfectly behaved four-legged buddy. However, he doesn’t like kids.

It’s likely a kid wasn’t so nice to him at some point in his past. I mean, he’s never eaten a child. And he’s never even tried to bite one. It’s more of a low rumble of discontentment. But if you visit our home with your kids, he’ll be in the basement. That’s how we set him up for success. If I let him interact with your kids and he’s a jerk, it’s really not his fault—it’s mine. Sometimes setting someone up for success means removing them from a setting that has not served them well in the past.

Before you think I’m going to compare people with dementia to small children and/or dogs and send me mean emails, let me clarify. I’m actually comparing all of us to small children and dogs, whether we have dementia or not. We are all like the kid at the restaurant and my kid-despising dog in that we do better when we are put in situations that are set up to help us be the best versions of ourselves.

And as adults, we take some much responsibility for setting up ourselves for success.

I go through times when I struggle to sleep. Although I don’t blame myself for my sleep issues, I do know there are certainly steps I can take to set myself up for a decent night of sleep. I sleep better if I avoid both caffeine and alcohol. I fall asleep faster if I don’t watch TV right before bed. It isn’t rocket science, but sometimes I fail to set myself up for success.

When trying to reach goals, forget willpower. It’s about setting yourself up for success. If you want to lose ten pounds, you set yourself up for success by preparing healthy meals in advance and joining a gym in a convenient location to your home and workplace. You don’t set yourself up for success by frequently eating at Mexican restaurants and trying to resist the margaritas and tortilla chips.

If you are in the earlier stages of dementia, you can (and should) take some responsibility for setting yourself up for success. If you always get disoriented at a particular restaurant because it’s loud and chaotic, request that you go to a more serene restaurant next time. If going to the movies exacerbates your confusion or anxiety, ask if you and your family can instead watch the show on DVD at home when it’s released. If you know that you’re tired and navigating SuperWalmart on a particular day is going to be too much, tell your family that you’d like to wait until another day. Or let them go without you.

You aren’t being a selfish diva. Keep in mind that when you set yourself up for success, other people win as well. We are all more pleasant to interact with when we are calm, rested, and in situations that we enjoy.

As people progress to later stages of dementia, some responsibility for setting up someone with dementia for success falls to caregivers. We set people with dementia up for success when we accept their limits and plan accordingly. Maybe Grandma can go to the grocery store with us, but the grocery store followed by Home Depot and lunch is just gonna be too much.

As dementia progresses, we may have to limit the duration of friendly visits. Social interaction may become more tiring. We must focus on quality of time rather than quantity. Setting someone up for success may mean cutting a visit short before a person becomes overwhelmed, tired, withdrawn, or irritable. It may also mean avoiding large group visits and asking friends and family to visit one or two at a time.

Years ago, I went to a presentation where a man with Alzheimer’s shared his experiences with the disease. I was fascinated with what he said but even more fascinated with how articulately he said it. Afterward, I had the privilege of going out to dinner with him. I was impressed with his efforts to set himself up for success when he had speaking engagements.

He said he never scheduled more than two a month, and he made sure to not schedule anything the day before or the day after. He told us that he always asked for 20 minutes to sit in a quiet room alone and collect his thoughts before he presented, and he mentioned that it was important he ate in a way that maintained his energy on those days he would be speaking. And he gave himself permission to cut his presentation short on days he just wasn’t feeling it. Although he spoke to our group for an hour, he said he cut his last speaking engagement short after just twenty minutes.

It was a good reminder that people with dementia can do amazing things when they set themselves up for success–and when we support them in doing that.

Let’s talk about kind strangers.

(You might wonder where I’m going with this…be patient. I’ll get there.)

Many times in my life, I have been the beneficiary of a kind stranger who made my day.

When I was in middle school, I was in a play. It was the only play I’ve ever been in, I had a small role, and I wasn’t very good. I remember standing in front of a vending machine during a break in play practice. The word “hangry” wasn’t a thing back them, but I was “hangry.” I put some money in to buy a snack and quickly realized that I didn’t have enough change.

A guy I didn’t know stepped up from behind me and put two quarters in the vending machine so I could get my snack. It wasn’t a huge act, but it must’ve had meaning to me because I remember it as I sit here more than 25 years later. This stranger had nothing to gain from putting two quarters in the vending machine so I could get my snack, but he did it. It was my earliest memory of a nice person doing something for me I would never reciprocate.

I had an experience with a kind stranger much more recently. I was on a flight from Cedar Rapids to Dallas last week with a flight attendant who absolutely made my day. He could have just done his job–but he made an effort to do it with humor and kindness. His dramatic demonstration of how to use the oxygen mask had me nearly in tears with laughter. (I’m not sure how American Airlines would feel about him mocking their safety standards, but I loved every second.)

He made an effort to keep the Camelbak water bottle I had brought on board filled with fresh water, even though that really wasn’t his job. I hate flying–not because I’m afraid of crashing but because I hate the inconvenience–and this guy made it about 20 times better. I had never seen him before, and I likely will never see him again, although I sure won’t be disappointed if he works one of my future flights.

I could give you many more examples of kind strangers who made my day by being especially friendly, generous, kind, and funny. People that I will come into contact with once and only once in my life. I’ve no memory of running into them before, and I don’t make plans to see them again. But that doesn’t matter. In that moment, they make me smile and laugh. They remind me that the world is an awesome place, and I’m lucky to be here.

It’s important to have supportive family members. It’s great to have a partner and friends that are fun to be around and come through in a crisis. I’m not downplaying the importance of long term relationships. But once I ran into this woman who was coming out of the bathroom at Barnes and Noble as I was coming in, and she said, “You have the most beautiful eyes, honey.” Sure, we don’t have a lifelong friendship, but people like that are important, too. They can change your mood in about two seconds. They can make you forget about all the crap that was on your mind. Thank goodness for strangers who spread kindness wherever they go.

As dementia progresses, interactions with strangers may be become frequent. Sure, it may be your spouse, your son, your daughter, your grandkid, your best friend…but if you don’t recognize them in that moment, they’re a stranger.

A friend of mine was struggling to visit her grandma who had dementia. Her grandma no longer recognized her.

“I don’t know why I go. I’m just a stranger to her,” my friend said.

Just a stranger?

I’m not denying it’s difficult when loved ones don’t recognize you. You are allowed to grieve that–but not when they are around.

But just a stranger?

A stranger can make your day. A stranger can show tremendous kindness. A stranger can surprise you with a sweet compliment. A stranger can make you laugh. Sometimes strangers can be pretty awesome.

If you are a stranger when you visit someone with dementia, be that stranger. Be that awesome stranger. Not the type of stranger that budges in front of you at line at SuperTarget or takes the last treadmill at the gym as you are walking toward it. Be the type of stranger that once got out of their car in a traffic jam a few days before Christmas and gave my husband and me a plate of sugar cookies. Yes, that really happened.

A woman I know recently told me that her mom with Alzheimer’s no longer recognized her. Once a week, she would visit the nursing home and bring her mom her favorite treat, Fig Newtons. Her mom had the exact same reaction each time.

“Now how would a stranger know my favorite treat?” she’d say with delight and a huge smile.

“A little birdy told me,” her daughter would respond.

“Well, I sure like that little birdy,” her mother would say.

This woman’s mother saw her as a stranger, but she was determined to make her mother’s interaction with that stranger as delightful as it could be. Many of us spend too much time quizzing our loved ones on who we are to focus on having a positive interaction.

Sometimes the best path is to stop insisting you’re a spouse, son, daughter, or friend. In most cases, you’re better off accepting your role as stranger. (And grieving your loss of relationship after you leave.)

But don’t just be any old stranger. Try to be the stranger that makes somebody smile.

When I was a younger version of myself, I moved to Kansas City for about a year. For the first five or so months, my boyfriend (now husband) was still in Iowa finishing his degree. I loved living in Kansas City, but I wasn’t excelling at making friends. I decided to do something I had done in the past–volunteer with a hospice organization. A quick search told me that there was one right down the street from my apartment complex.

I joined a hospice program that served residents in nursing homes who were “actively dying” (a hospice term that describes the period in which the body physically shuts down–because we are all, as explained in hospice training, dying all the time). These were residents who had no family or friends in the area to be with them through the process. Obviously, nursing home staff must tend to other residents. The role of the hospice volunteer was to just be there. As my hospice volunteer coordinator taught me, I’m a “human being not a human doing.”

It was a perfect fit at the time. I’d get an email from hospice staff asking if anyone might be available to sit with an individual at a nursing home for a two to six hour shift. They were especially in need of volunteers to go during the night. As a single person with a flexible job, I felt like this a great way for me to make a small difference in the world.

I got an email one afternoon from the volunteer coordinator asking for volunteers to sit with a woman who had Alzheimer’s. Her daughter was in California and would be here in a few days. She didn’t have the money to fly but had started the drive. I had learned from previous experience that family members were not always on their way. Many said they were coming and never showed. Hospice was amazingly non-judgmental about this, although at times I will admit I was probably more judgmental than I should have been.

I showed up at the nursing home at 10 pm. I had agreed to stay until 2 am. If there’s anything hospice has taught me about death, it’s that TV and movies give us the wrong idea. Death is typically much more boring in real life than it is on screen. I’ve never had a dying individual sit up in bed in the last minutes of their life and give me some genius insight. I didn’t figure tonight would be any different, and I settled in.

Her TV was on and tuned to an old episode of Law and Order. I wasn’t sure if that was okay. I preferred it be on to fill a bit of the silence, but leaving it on somehow felt like cheating to me. I was supposed to be sitting with someone who was in the process of dying—not watching Law and Order. And I wasn’t sure if Law and Order was the right show for “actively dying.” But I left it on. For some reason, I wasn’t comfortable making the decision to turn it off or change the channel. Maybe at some point in the past she had told someone “As I’m dying, please leave on Law and Order. It’s my favorite show.”

Whenever I met a new hospice patient, I introduced myself. I predicted I’d get no response, but I felt it important to do anyway. I could never decide what information was important to include. I’m Elaine. I just moved here from Iowa. I live in an apartment on the Kansas side (because in Kansas City it was always important to know if someone lived on the Kansas side or the Missouri side). I have two cats. I’m a hospice volunteer. I heard your daughter is on her way. I’ll be here until 2 am. The last part made me sound like a comedian who had just told a joke that bombed.

Then I told her it had just started snowing outside. I’m not sure why I thought that was important to add, but it seemed like something she should know.

I told her to let me know if she needed anything….although I predicted she couldn’t. Her breathing was loud. Maybe I’d call it a wet snore. If you’re familiar with the term “death rattle,” you can go with that. She didn’t seem uncomfortable.

I looked around for clues about who this woman was. I saw a Bible on her night stand. I picked it up and thumbed through it. I remember thinking I should read her something from her Bible but I was uncomfortable choosing a verse. I told myself that I should Google “Bible verses to read to dying people” for future reference. (This was before smart phones.)

There was a large stack of greeting cards on the other side of her bed. I wasn’t sure if it was okay to touch them, but I did. After all, they were out in the open–not buried in a drawer. I found birthday cards, get well cards, Valentine’s Day cards, Christmas cards. The stack didn’t seem so large when I realized the cards had been received over the past couple years.

I decided to read the cards to her. A few of them were addressed to Grandma. A couple of them were from nieces and nephews. Several were from a man named George. He would sign “With Love, Your George,” or “From My Heart, George.” I wondered if George was a romantic interest. I wondered where he was now. I hypothesized that he was the love of her life but he had recently passed away. Now she was on a journey to be with him. I had no reason to think this, but I liked the idea.

After I had been sitting there for what seemed like three hours but was probably fifteen minutes, a nurse came in. I asked a few questions and learned a bit more about my patient. She had lived at the nursing home for several years. The staff loved her. They called her “a pistol.” She bickered constantly with her roommate. She had few visitors. Those who visited her were usually from the church she had previously attended. She was originally from California but had moved to Kansas City when her ex-husband started a new business there. He became her ex-husband when she realized the real reason he wanted to start his business in Kansas City was so he could reconnect with his high school love interest. (She told the staff this story often, referring to her ex as a “horse’s rear”.) She had a middle-aged daughter in California who visited about once a year.

Then I asked a question that I now realize was quite ignorant on my part.

“I know she has Alzheimer’s, but what’s she dying of?” I asked the nurse. At that point in time, I knew people with Alzheimer’s died, but I assumed they died of other causes that happened to impact them, like heart disease or cancer. I didn’t know Alzheimer’s was fatal.

“I don’t know,” said the nurse. “I guess just old age.”

I bought it. I didn’t realize at the time that Alzheimer’s is a fatal disease. I didn’t get that it slowly and relentlessly destroys brain cells until life is no longer sustainable. I didn’t understand that this woman was dying of Alzheimer’s.

Maybe her death certificate would say “complications of Alzheimer’s.” Perhaps it would say “infection” or “pneumonia.” It might even say “multiple organ failure.” Yet any of these causes would be a result of Alzheimer’s. (I tend to think we underestimate Alzheimer’s deaths by labelling a different cause on the death certificate. I think we should consistently use Alzheimer’s as a cause of death to obtain a more accurate estimate of how many individuals the disease impacts.)

As I talked to the nurse a bit more, she explained that the last year had been rough for my hospice patient. A fall resulting in a broken hip–or maybe it was a broken hip that resulted in a fall, as is often the case. Many urinary tract infections, which I know now are common in end-stage dementia. Issues with swallowing that forced the nursing home to switch her to a thickened liquid diet. After a while, she just stopped swallowing altogether. This resulted in a weight loss that made her, as the nurse put it, a “skeleton of her old self.”

She became less and less responsive. She had stopped speaking about six months ago, and then it was harder to get her to open her eyes. The nurse told me that the staff had always enjoyed her, and they were sad but relieved to see her journey coming to an end. She used the term “fading away” several times. She just seemed to be fading over the past year.

Every person with Alzheimer’s is unique, but I’ve come to realize that this is a pretty common end of life story. At the time, I just saw a woman fading away. Now I realize this is how people with Alzheimer’s die. UTIs. Other types of infections. Pneumonia that often results from aspiration. Pressure sores that become septic.

So here I was—with a woman I had never had the privilege of knowing until that night. I pictured how she might have come into this world. I’m assuming there was an air of excitement for a new child, a mom waiting to welcome her, maybe some family hanging out anxiously awaiting the baby. Now, here we were at the other end of life. And it was just her and me. In one way, I felt obnoxiously out-of-place. (I eventually learned to stop overthinking this as a hospice volunteer. Otherwise I got caught in a cycle of repeatedly asking myself “What the hell am I doing here?” and “Am I really tricking people into thinking I’m an adult who is capable of handling being in this position?”) In another way, I felt pretty special.

She didn’t die that night. Another volunteer relieved me a few minutes after 2 a.m. I told him some of what the nurse had relayed to me, and he looked uninterested.

I got an email that afternoon, asking me to do another shift that night. I agreed. However, her bed was empty when I showed up. I didn’t confirm with the nursing staff that she had passed. Her half of the room had been sanitized…and I don’t mean disinfected in the literal sense. The Bible and greeting cards were gone. Her TV was gone. I knew the quick turnover of the room was necessary, but it bothered me that so soon after her death the space looked like she had never existed within it.

I received a call from hospice the next day apologizing that they didn’t notify me of her passing. They explained that no one from hospice was at the nursing home when she died the morning after I stayed with her, and the nursing home was delayed in notifying them. They mentioned that her daughter didn’t make it in time. I didn’t ask if she was alone when she passed away.

When this particular hospice volunteer coordinator would call and notify me of a patient’s passing, she would always wrap up the conversation by saying somewhat awkwardly, “And I guess that’s the end of the story.”

However, it wasn’t quite the end of the story. A few weeks later I received something in the mail from hospice. There was a sticky note on a card addressed to “Volunteer.” The sticky note explained that the woman’s daughter wanted a thank you note given to each person who had been with her mother in her final days.

The daughter’s card was a sweet thank you in beautiful cursive handwriting, but a few words stuck with me. (I am paraphrasing here because, although I kept this card for years, I have no idea where it ended up after we moved a couple years ago.)

“I’m sorry I couldn’t get there. I had already taken so many days off work because I thought we were losing her a while back and I didn’t have more days to take. I couldn’t afford to fly. I was going to drive but I wasn’t sure if it was a false alarm again. I’m so sorry and grateful to you,” it read.

I decided to write a card to her and send it through hospice, to tell her that her mother was comfortable and peaceful when I was with her. I thought it might be comforting for her to know that, from my perspective, her mother wasn’t in pain. Maybe I could tell her that I read the greeting cards aloud to her mom. Perhaps she would enjoy knowing that the nurse mentioned how much the staff cared about her mother. I went to Walgreens and bought a card.

I never sent that card.

I should have sent it. I could have sent it. I just didn’t send it. And I regret that I didn’t send it.

I’d say I had the best of intentions, but that’s a meaningless statement. The smallest action is greater than the largest intention (or something like that).

I just wish I had sent the damn card.