Tag Archives: alzheimer’s

Dementia and the Holidays: My Message to You

Happy Holidays–

I am cheating this morning, friends. I was going to write you a holiday message, but I realized I already wrote the blog post I wanted you to read back in 2016. (Can you believe I’ve written this blog that long?) So–why reinvent the wheel, right? Especially because I am not ready for the holidays. Heck, I am not even ready for today. Here’s goes…this was originally posted in December of 2016.

Oh, and also…here is a video of my dog Ernest wearing pajamas. Turn the sound up. I added music. I am who I am, folks. https://www.instagram.com/reel/C0269qoMUac/

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I’m awake late into this Sunday night and rather than watch more reality TV or spend more money on Amazon.com, here I am with my laptop sitting in bed.

And I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.

I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.

The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.

Recently I’ve heard the following statements from family members of those with dementia:

“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”

“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”

“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”

“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”

“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”

“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”

If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.

It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.

I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.

The people who cheerfully work at the nursing home on Christmas day.

The neighbor who understands you are overwhelmed and shovels your driveway.

The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.

The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)

The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.

If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.

And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.

They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)

I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.

This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horribly wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgment here, folks.

Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.

My Holiday Letter to You

Dear Friends,

Happy holidays!

Here’s little update on our fam. Bill is an administrator at the University of Northern Iowa. I am a professor of Gerontology. Gus-Gus, our resident geriatric dog, is now 17 and wears a belly band. His eyes are cloudy but he’s thriving. Carlos, our youngest pup, is now about 6. His hobbies include trying to eat cat food and borrowing under blankets. Our three cats continue to be furry terrorists who do things like knock everything off the mantle and attempt to seize control of the counter.

Sounds like we will be getting a new puppers in the next week or so. We will be adopting from an animal rescue that takes in disabled and geriatric dogs. You want pics? Oh, you’ll get pics.

But about my holidays wishes for you….

I really don’t care what you celebrate. Hannukah? Christmas? Winter Solstice? National Pumpkin Pie Day? National Consumer Rights Day? Any/all of the above? My message here is the same.

Have the best possible holidays.

Not the most perfect holidays ever. Not the most exciting holidays ever. Not the most awe-inspiring holidays ever.

Just the best possible holidays.

You don’t have to have four different kinds of pie. Each person doesn’t need a dozen presents to open. It’s fine if you don’t get around to putting up a tree. You can do minimal decorations. You can buy pre-made stuff for dinner. You don’t need to organize post-meal games and entertainment.

Let it go.

Seriously. Let it go.

Many of us love the holidays. Some of us don’t. And, really, quite a few of us probably both love and hate the holidays all at once.

If your family is impacted by dementia this year (or if you’ve lost someone recently), the holidays might not look the same.

And that’s okay.

I read something the other day that stuck with me.

Everything ends, and that’s okay.

It reminded me of the times in my life where I’ve held onto something too long. A romantic relationship. A friendship. A job. A hobby. Even a pair of jeans that doesn’t fit anymore (because I am going to lose the weight, right?).

It takes a lot of energy to hold onto a tradition when everything around that tradition is changing.

The yearly family tour of holiday lights. The gingerbread house building contest. The all-day holiday movie marathon. Midnight mass. Early morning worship service. The 6am present opening start time.

Maybe it worked before. Maybe it doesn’t work anymore.

Everything ends, and that’s okay.

Someone with dementia may not have the stamina for an all day holiday celebration. It’s okay if they only stay for 45 minutes. It’s fine if they go take a nap in the bedroom. If they have little patience with loud and excited children, allow them a quiet space to regroup. Or get the heck out of there.

The holidays are different now. It’s okay.

I know from experience that you can get take out for Christmas dinner. The local grocery store cooks it and all you need to do is re-heat it. Maybe you are going to miss mom’s sweet potato pie, but you will survive. And clean-up is easier, too.

You know what happens if don’t have the time or energy to go out and buy holiday gifts? You can shop online. If that’s too much, you can give cash or gift cards. And, you know, if you aren’t in a position to be able to give gifts, people understand. And if they don’t understand, they’re jerks and that’s their problem.

The holidays can be pretty dang joyous, but they’re a lot. They’re a lot for people living with dementia. They’re a lot for care partners.

Small gatherings might be better than big gatherings. Short intervals with kids may be better than long intervals with kids. Quieter may be better than louder. Less lights might be better than more lights.

And, as is my advice year-round, always have an exit plan. Maybe it’s a hotel. Maybe it’s a quiet room at a gathering. Maybe it’s a conversation before an event where you explain that you’ll quietly slip out when the time is right–even if it’s only 20 minutes into the gathering.

Oh, and don’t feel the need to explain all of your decisions to family members who don’t even try to understand your reality. They don’t have to get it. In fact, they probably won’t.

As for me, this is goodbye. Not forever. But at least until spring semester starts in January.

XOXO,

Elaine

Dementia at the Wedding Reception, the Winery, and the Martini Bar

Everybody has a story.

When you walk around this world and tell people you teach about dementia and started a dementia simulation house, everybody has a story.

And it’s my job to listen.

It’s a parent living with dementia who wandered away from home for two days before being found in a park. A nursing home that treated a loved one poorly. A neighbor who thought you were stealing his tools. A suspicion about your mom or your dad. Or yourself.

Many times there are questions. Why did he behave like that? Can you use the nursing home? How can I convince the neighbor I’m not stealing his tools? Do you think I should be concerned about my loved one? Or myself?

Keep in mind…these are conversations I have in passing. At graduation parties. At wedding receptions. At the indoor cycling studio where I coach.

You could say I should do better at keeping home/work boundaries and avoid these conversations. Or maybe have these individuals call me during work hours.

That’s not really how I’ve structured by life. It’s a choice. I jump into the conversation leaving my poor husband wondering if we’ll ever make it out of Target. (Bill, I appreciate the way you patiently wait for me to finish a dementia lecture in the cereal aisle.)

But here’s the thing….what am I interested in? I’d better say dementia, or I’ve take a wrong turn somewhere in life. These stories are interesting. And I learn.

There was a guy who said, “My wife has that dementia. It’s from all the time she spent breastfeeding. It messed with her brain.”

I learn I need to do a better job helping the public understand what may cause dementia, and what does not.

And the woman who told me, “My dad has both dementia and Alzheimer’s. Can you believe our bad luck?”

I learn I need to do a better job teaching the difference between Alzheimer’s and dementia. Alzheimer’s is one type of dementia. Everyone with Alzheimer’s has dementia.

In the middle of a wedding reception, a woman approached me and said, “I heard you’re the dementia lady. I want to know where I am supposed to turn after my husband got diagnosed. No one can help us.”

I learn we still have a long way to go in providing support services and making families aware they are available.

Once a gentleman asked me if dementia was contagious. The jaws of people lingering around dropped. I responded that it was not. And I realized that there are people who have not have an opportunity to learn about dementia.

In order to teach communities about dementia, I need to get a feel for what people know and don’t know. I’ll be honest. When I have conversations about dementia, I talk too much. And I don’t listen enough.

So I’ll start at the gym. At the wedding reception. At winery in northeast Iowa. At a martini bar. (Ask my friend Amy…sometimes I wonder why she wants to go out with me anymore. Sorry, Amy, for all the times you had to sip your drink and listen to me give a TedTalk to the bartender.)

Before you think I am trying to throw myself out there and suggest I’m a hero, stop. I know a lot about one particular topic and I want to share that info to help when I can. But, really, I am incredibly fortunate.

I have a few favorite topics….indoor cycling, pets, and dementia. All of them are part of my daily life. And y’all know I could talk about dementia all day, and so I do. Except when I am telling you about my two dogs and three cats.

My life is pretty cool.

Dr. Eshbaugh’s Christmas Letter (aka Give Yourself a Break and Change Your Expectations)

Dear Friends,

This is the closest thing to a Christmas letter I will write this year, and it is to those of you who live with dementia and those of you who are caregivers.

First of all, it doesn’t matter to me what you celebrate. Hanukkah. (Obviously I don’t celebrate Hanukkah because I looked up how to spell it and it still doesn’t look quite right.) Christmas. Winter Solstice. Festivus. National Eggnog Day. Maybe you don’t celebrate anything, and that’s fine with me. Maybe you usually celebrate something but don’t feel like celebrating this year. I’m not here to judge.

If you choose to celebrate something this year, I encourage you to be flexible. I encourage you to be patient with yourself and with others. I encourage you to accept that life is changing. Perhaps some holiday traditions will continue, whereas others will not. That’s okay.

Remember you can say no.

Yes, I am talking to YOU. You can say no.

If someone invites you to an event, you get to decide whether that event is going to work for you. Maybe it will be too loud, too crowded, too long of a drive, too time-consuming, too intense. Maybe it’s at night and your loved one with dementia typically goes to bed early. Perhaps you’re a caregiver and you just don’t have the energy. All of those are legitimate reasons to say no.

You can say yes–and then change your yes to a no when your loved one with is having a rough day. If someone judges you, they don’t understand dementia. People living with dementia have bad days, and on bad days some things might just not be possible.

Church services, especially crowded ones, can be stressful for someone with dementia. (Not to mention that whole COVID thing, right?) Can you live stream the service? Or organize a short candlelight service for your family at home? Maybe your family has gone to Midnight Mass every Christmas for 40 years. Perhaps that just doesn’t work this year. It’s okay.

Maybe you don’t need to volunteer to host the family holiday party. You say you’ve hosted it for 30 years? Sounds like you’ve paid your dues and it’s someone else’s turn. You know what’s great about NOT hosting? You can leave!

On that note….

Have an exit plan. If someone with dementia is having an off day, they may only be able to stay 30 minutes at family Christmas. This is why you always drive separately. Don’t ride with Aunt Jean and Uncle Tony. They might want to stay all day. Don’t let anyone guilt you for an early exit. I give you permission to pull one of those sneaky exits where you don’t say goodbye. If you need to leave, just leave.

Is there a place you can crash for a quick break or nap if the gathering is overwhelming? Can you escape to the basement for a deep breath if the grandkids are out of control with their ridiculously noisy and obnoxious toys? Don’t be afraid to step away. Keep in mind that a gathering like this can be anxiety-provoking for someone with dementia who may not recognize everyone (who are these people and why do they want to hug me?) and be sensitive to noise.

Giving cash or a gift card always works if you aren’t up for shopping. It is okay to order pizza on Christmas Eve. I am guessing no one will miss your holiday card that much if you don’t send one. And those delightful platters of high calorie treats that you bake and deliver to your neighbors? They will survive without them.

Not that I speak from experience or anything, but if you aren’t up for wrapping gifts, gift bags are great. I’ve also been known to just hand people their gifts in a plastic Target bag. Tacky? Maybe. But I’ve never had anyone refuse the gift because it wasn’t wrapped.

Maybe this is the first year that you celebrate the holidays at the nursing home with Grandma because taking her home causes too much confusion. Two or three of you visit at a time. Having a large group seems to cause anxiety. And then you have your family Christmas bash at home without her. You feel like an awful person, but you’re not. Sometimes your best option just isn’t all that good. We do the best we can.

So that’s it. Give yourself a break. Change your expectations. And, happiest possible holidays!

XOXOXO,

Elaine

Caregiving is Hard Because It’s Hard

I want to acknowledge something that we “professionals” do to dementia caregivers.

We have good intentions, of course, but you have every right to roll your eyes at us. We preach taking a break. We tell you that respite will do you well. We say that you need to reward yourself with some self-care.

Great recommendations, obviously. But perhaps it sounds like we don’t know your life.

A break? I am supposed to take a break from what….my life? I don’t see anyone waiting here that’s ready to take over my caregiving responsibilities.

Self-care? How can I take a bath when my husband who has Alzheimer’s might wander out the front door and get lost?

A vacation? What a joke. I would be so stressed out being away from my loved one. And my partner had to quit their job when they were diagnosed so we don’t have the money.

Sure, I recommend you do your best to set up some supports so you’ll have more options. An alarm system? A neighbor to stop over? A short weekend trip if you can find a family member to stay with your loved one?

But I get it.

It’s not that easy.

Meditation? Yoga? Great options. But, as a women once told me, “Meditation is great…until my husband starts screaming and crying because I am in another room and he can’t find me.” The reason you most need meditation may be the reason you can’t make it happen.

As a dementia caregiver, you tell people you’re struggling, and they tell you to get a massage. Or maybe a facial. Or to go shopping to relieve some stress. They tell you that you look tired and you should work on getting more sleep. Ha. These people mean well, but I worry their message carries blame.

You are stressed because you’re not doing these things.

Yep, caregivers, just another thing you are messing up.

But, my friends, you are not struggling and stressed because you’re doing something wrong. It’s because….dementia isn’t easy. Your life isn’t easy. And that’s the nature of the beast here.

Caregiving is hard. You are not stressed because you need a nightly bubble bath and a yoga class. You are stressed because caregiving is hard.

That deserves to be acknowledged.

What You See in Dementialand

This is the fifth of a series of five posts about the senses in Dementialand.

Today we focus on sight.

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when a woman with Alzheimer’s suddenly became very upset.

“Who is watching the children?” she kept asking me. “They are going to get hurt.”

I wasn’t sure what children she was referring to, but I tried to assure her that they were safe. She wasn’t having it.

“They are going to hit each other with that stick and no one will know,” she said. She was becoming agitated, so a staff member removed her from the activity. As she was walking down the hallway, she kept looking back at me and shouting about how I needed to care more about children.

As I wrapped up the activity about fifteen minutes later, I packed up my equipment and turned around to leave. I realized that there was a picture on the wall behind me. The picture was a large framed image of several small children playing baseball. One of the children was holding a bat.

At that point, I realized that this woman’s concern was valid based on how she was viewing the world. It was likely that she saw the picture behind me and thought it was a window. She thought there were children outside of that window playing baseball with no supervision. She saw the child holding a bat (or a “stick”) and was concerned that they were going to get hurt.

Instead of listening to her concern about the children, we had dismissed her and removed her from the situation. No wonder she was frustrated.

Sometimes people with dementia confuse pictures, especially larger ones, for real-life scenes or windows. I also find that they may misinterpret coat racks for people. I was recently asked if the man in the corner would be joining us for lunch. I looked to the corner to see a coat rack with a single coat hanging on it and a hat sitting on top. I told my friend with dementia that I thought that man had already eaten lunch.

Changes in the visual-perceptual system can impact eating. A person with dementia may not see mashed potatoes on a white plate. I know a woman with dementia who refused to eat a piece of lasagna (her favorite food) because she swore there were fleas on top of it. They were actually tiny oregano flakes, but her family could not convince her. She only ate it when they took away that piece and returned with a piece of lasagna with the oregano scraped off.

At a caregiving seminar recently, a woman told me about her husband who ended up in the hospital with dehydration. He had complained about thirst, but when she brought him water he didn’t drink it. She realized later that he couldn’t recognize that there was water in the glass, so he thought it was empty. Her solution to the problem? She added a very small amount of Crystal Light to the water so he could see the fluid in the glass.

Depth perception often becomes an issue with dementia. Again, it’s not that there’s necessarily a problem with the eyes. It’s that the brain struggles to make sense of what the eyes see. Compromised depth perception is often problematic when it comes to flooring. Rugs may look like holes in the floor. Someone might refuse to step onto a blue floor because they believe it’s water. A change in flooring surface may look like a large drop-off. Shiny flooring may appear wet or slippery. Sometimes people have a problem telling where the floor ends and wall begins. It can be helpful to paint the baseboards a contrasting color.

People with dementia might struggle with visual distractions. Keep in mind that the dementia brain has to work hard to interpret visual data. Trying to interpret too much at a time can lead to irritability and agitation. As strange as it might sound, someone might have difficulty focusing on the TV if there is a loud patterned wallpaper on the wall behind the TV. Visual “noise” can keep a person with dementia from being able to focus on what is important visual information. (And you can tell how I feel about wallpaper by my description of it as visual “noise.” On a related note, it takes several weeks to destroy that visual “noise” with chemicals and razor blades when you move into a house whose previous owners obviously found wallpaper quite pleasing.)

It’s important to remember that people are visual data. We know that sometimes people with dementia forget their loved ones or mistake them for others. They don’t recognize their daughter. Maybe they think their grandson is their son. Perhaps they think a nursing home staff member is their mother. Of course, much of this is due to compromised memory.

Sometimes, however, a person with dementia simply needs more time to process the visual image of a person. Let’s say you visit your grandma who has Alzheimer’s. Walk into the room. And then stop about four feet in front her. Just pause. Allow her to process you visually as a still (not moving) image. This gives her the best opportunity to recognize you, and–even if she doesn’t recognize you–she is less anxious as you move toward her. Just like you should give someone with dementia plenty of time to process a question after you ask it, you should give them plenty of time to process an image you put in front of them.

The more I work with people with dementia, the more I realize that their behavior makes sense if I can figure out how they see the world. It’s just that figuring out how they see the world sometimes takes a bit of detective work.

 

Whack-A-Mole and Tongues in Dementialand

A friend of mine, who is engaged to be married, once referred to conversations with her future mother-in-law as games of Whack-A-Mole. I remember being a huge Whack-A-Mole fan when I’d visit Chuck E. Cheese as a kid. Little toy moles would pop up in random patterns and I’d have to respond by hitting them with a mallot. My friend considered her future mother-in-law’s questions and topics of conversation to be so random and unexpected that they were like those little moles popping up.

I could use the same analogy for some of my friends with dementia. Their questions, comments, and subjects of conversation aren’t always predictable. As someone who gets sick of bland and boring small talk (“Hi, how are you?” “Fine, how are you?” “Good.”), I’ll take the refreshing Whack-A-Mole conversation anytime.

I was walking out of a nursing home last week and passed an older man who appeared to be sleeping in his wheelchair. When I walked by, he opened his eyes.

Without pause, he said to me, “I know a lot about tongues.” Yep. It was a Whack-A-Mole conversation, and I was all in.

“I’ve always wanted to meet a tongue expert,” I said without missing a beat.

And he was more than willing to teach me about tongues. First, he told me to open my mouth and show him my tongue. I obliged.

“Yes, that is a good one,” he told me. I was strangely proud. He continued talking about tongues. My tongue. His tongue. Tongues in general.

Here is what I learned about the tongue:

You might think that the tongue is a single muscle (I did), but it’s actually made up of eight muscles. In fact, you can think of it as a “little bag of muscles.” If people have bad breath, it is often because of bacteria on their tongue. Taste buds aren’t just on your tongue. They are also on the roof of your mouth and other places “around in there.” The average tongue is 10 centimeters long (but this guy said he had measured his a few years ago and it wasn’t quite that long). It’s hard to get an accurate measure of a tongue because of the gag reflex. A human tongue print is as unique as a fingerprint. Cats have special tongues that are rough so that they can be used for cleaning, but their tongues also pick up a lot of debris which is why they get hairballs. Oh, and people can get tongue cancer. He knows several men–but no women–who have had tongue cancer.

After the tongue lecture, I asked him, “How do you know so much about tongues?”

He pointed to his forehead, and his eyes lit up.

“Encyclopedia!” he exclaimed. And then he used his feet to turn his wheelchair around and headed off in the opposite direction.

I was left standing there watching him as he slowly moved down the hallway.

When I got home that night, I got on my laptop and Googled “interesting facts about tongues.” I realized that everything he told me about tongues was, in fact, credible. I hadn’t doubted him. It’s just that I’d given so little thought to tongues in the past.

I read an article on gratefulness while I was waiting in the doctor’s office a few weeks back. The article suggested identifying at least one “highlight” of the day when you go to bed each night. This is something that would usually make me roll my eyes, but I’ve been doing it. No matter how good, bad, or neutral my day was, I force myself to think about one positive thing that happened as I get ready for bed.

On this particular night, I thought to myself, I learned a lot about tongues today.

Whack-A-Mole.

 

 

 

 

Toilet Paper in Dementialand (aka Why Christmas Comes Faster Each Year)

As a kid, I thought Christmas would never come. I’d want something–a toy, a musical instrument, a jersey (because that’s all I wore when I was a kid)–and my parents would tell me I could have it for Christmas. Yet Christmas was an eternity away. And by an eternity, I mean about four months.

My birthday was the same way. I was five and wanted to be six. I was eleven and wanted to be twelve. I was fifteen and wanted to be sixteen. And I never thought that day would come.

As an adult, I find the opposite is true. I had a birthday recently. A few weeks before my birthday, my husband asked for gift ideas. The question took me by surprise because it seemed like I had just had a birthday. I say this with neither dread nor excitement, simply as an observation. My birthday comes around once a year, just as it always has. There was exactly one year between my ninth and tenth birthdays. Not coincidentally, there was the same amount of time between my two most recent birthdays. How come birthdays seemed so far apart when I was a kid?

And Christmas…I feel like it’s Christmas season about 80% of the year. In January we put the tree in its box (some years we even take off the ornaments) and store it in the basement. Then comes the cycle again–Halloween, Thanksgiving, Christmas–in the blink of an eye.

To be honest, it scares me. I work with older people, so I accept that I will someday grow old. More than that, I hope that I grow old because it’s a privilege that many people don’t get to experience. I don’t take it for granted. It’s just that life seems to be on fast forward. Sometimes I want to pause it or at least experience it in slow motion. I’m in a good place. I like it here.

In one of my first years of college teaching, a student in one of my classes had a seizure. I can’t say I panicked. In fact, I knew exactly what I needed to do, and I did it very confidently.

I said to my class, “I’ll be right back. I’m going to get a grown up.” I ran out of the room and found another faculty member who I apparently perceived as an actual grown up. For the record, I was 28. That’s the thing about how fast time goes…you forget that you’re older than you used to be. You forget that you’re the grown up.

Recently I had a conversation with my friend Jen about adulthood. She’s in her 20’s. I’m in my 30’s. Both of us feel like we are faking adulthood on some level. We don’t know if we’ll ever feel like adults, or maybe we just had the wrong idea about what it is to be a full-fledged grown up. You blink, and you’re 25, then 30, then 35…and I just turned 38. I’m not complaining about getting older; I just don’t know where the time went.

While visiting a nursing home, I got into a conversation about how time slips away faster and faster as I get older. (And I know that I am by no means “old.”) I was talking to a man in his 80’s who has dementia. I was telling him a story about how I once registered for a 10k and said I was 32 when I was actually 34.

“Life is like a roll of toilet paper,” he said. For a moment, I thought he was trying to quote Forrest Gump but was confused. I was wrong. He knew exactly what he was saying. I realized later that this is something Andy Rooney said as well.

He went on to explain that a toilet paper roll spins faster when there is less toilet paper remaining on the roll. It made sense to me. When the roll is full, it spins slowly. Yet when less remains on the roll, it begins to spin faster and faster. He explained this using overly dramatic hand motions–so dramatic I worried he was going to fall out of his chair.

“I thought my roll was on its last spin a couple years ago, but it kept on spinning,” he told me dramatically. “Now I don’t wanna blink because I’ll be dead before my eyes open.”

I had a few students with me, and they laughed awkwardly. He went on to explain something that I’ve thought for a long time haven’t been able to put into words. He told us that he was tired of people (most of whom are much younger than he is) complaining about getting older. He said that he was going to scream if he heard one more person turning 40 complain about their birthday.

“You’re 40 and you’re here. Be happy for that. You could be dead,” he said. When he said the word “dead,” he put his hands up to his neck, as if he were croaking. He could have been more eloquent, but I appreciated his bluntness. “Time flies. Don’t waste it by bitching that you’re 30, you’re 40, you’re 50. I’m 85 and I’m sitting here. I’m probably gonna drop dead before the evening news but at least I’m here now. I’m lucky.”

My students, again, laughed awkwardly, but they were listening. They seem fascinated by his monologue. He talked more about life….about how he refuses to complain about his aches and pains because aches and pains are better than being dead, about how he can’t bitch about using a cane when he sees people younger than he is in wheelchairs, and about how he thinks it’s ridiculous that a person can join AARP at 50–when they are “just a kid.” He thinks you shouldn’t be eligible for AARP until at least 70. He also talked about how his mom died 50 years ago, but he still sometimes waits for her to scold him when he says a bad word.

He told us that he can’t do everything. He can’t drive a car. He can’t play tennis. He can’t golf. Then he stopped to point out that he never could golf. He paused while he waited for us to laugh. We obliged, although I’m not sure my students got the joke.

On the way back to campus, a couple students and I had a philosophical conversation about life. It’s the type of conversation I always thought I’d have with students as a college professor but seldom happens except in the movies. Somehow, on our short drive across town, we talked about how our youth-centered society makes us dread aging and how we hate the term anti-aging…because they only way to stop aging is…well…you get where I’m going with this.

As we pulled into the parking lot, one of my students said, “That guy at the nursing home was kinda like Yoda. He was really wise and made me think.”

There is something about one of my college students comparing this old guy with dementia to Yoda that made my day–or my week–or maybe my whole teaching career. It was a good day.

I was talking to a colleague recently who said she hated “everything about growing older.” She complained about the wrinkles around her eyes, and she talked about how she can only eat “about 10 calories” a day without gaining weight.

I told her about my friend with dementia and his analogy about toilet paper. I told her what he had said about not complaining about aging—because you could be dead. I expected her to have an Oprah-style “aha” moment much like my students and I did during our conversation about how life is life a roll of toilet paper. She stared at me. She wasn’t buying what I was selling.

“Stop it with that crap. You’re such a gerontologist,” she said.

I guess people have to learn to accept getting older on their own terms. And I’m no Yoda.

History Lessons from Dementialand (Or How I Learned to Love History)

History wasn’t my favorite class in school. In fact, that’s a grand understatement. History was probably my least favorite class in school. (I’m kind of lying. Chemistry was actually my least favorite subject but I don’t often mention this because my dad was a chemical engineer and my apathy toward chemistry repeatedly breaks his heart.)

My feelings about chemistry aside, I was not a fan of history. I remember one of my high school history teachers. He had shaggy hair and wore tie-dyed t-shirts. He tried to make it interesting. I’m sure he did make it interesting for other people. Somehow, he didn’t make it interesting for me. That’s not a complaint about him. I feel like I probably owe the guy an apology. I never even tried to take an interest in what he was talking about.

College wasn’t any better. I made a decision to dislike every history class I had to take before the semester started. It didn’t help that I was dating a history major at the time. I didn’t understand how he could find this stuff interesting. He didn’t understand how I couldn’t.

When I finished college, I thought I was done learning about history. Little did I know that I was just getting started.

My friends with dementia have taught me more about history than I ever learned in school. That’s not a knock on my education. It’s a comment on my previous disengagement in the subject matter and a nod toward the opportunities I’ve had to learn from people who were around decades before I was. And some of them are pretty damn good teachers.

A man with Alzheimer’s told me that he was in a car with a group of guys who cheered when they heard on the radio that John F. Kennedy was shot. I asked him why they cheered and he shrugged. He said he guessed they didn’t like Kennedy. And that they were teenagers. He told me that teenagers are teenagers.

A women in her late 80’s who suffered from dementia told about what it was like to go through a divorce when divorce was stigmatized. Interestingly, she was the one who wanted the divorce, even though she knew it would leave her in poverty to raise a child. Her ex-husband found a new wife within a few months. It wasn’t so easy for her. She told me that men practically sprinted away when they found out she was divorced with a young child. She called it a double standard. She finally did get remarried…in her 60’s.

I sat at a nursing home once while a man told me about having tinsel on his family’s Christmas tree as a child. It was a product of the Great Depression, he said. People wanted decorations that were shiny to spruce up a Christmas tree with few presents underneath. Tinsel was cheap but somehow fancy. It made people feel a little richer when they were poor.

It occurred to me recently that this is history. If you know anything about dementia, you know that it is typical for long-term memory to outlast short-term memory. It is common for someone to have no idea what they had for breakfast but to be able to recall rich details of something that happened 40 years ago.

I’ve heard people say that the preservation of long-term memory is a gift—that it gives people with dementia time to pass on their stories before they disappear. I once had a woman with Alzheimer’s tell me that she wasn’t forgetting her past. She was passing it on. Unfortunately, not everyone has someone to pass their story on to before it is forgotten. Many experiences don’t seem notable enough to make the history textbooks, but that doesn’t mean they lack value.

Everyone has a story. Their story is about them, of course, but it’s also about the context in which they lived. It’s about when they lived. It’s about where they lived. It’s tied in with the headlines of the era but (to me) more interesting. That’s what I was missing about history when I was younger.

I meet many people who can no longer tell me their stories. I used to say hi to a woman at a nursing home when I’d visit to do staff education. She was slumped over in a wheelchair and could not speak. She couldn’t tell me her story. After she passed away, I learned more about her. She was a white teacher at a predominantly black high school in a rough part of Chicago. You could find her students hanging out at her house in the evenings, doing homework and eating cookies she had baked. Now there’s a story (and one you could probably make into a made-for-TV movie).

I like to joke that children frighten and confuse gerontologists like me. Contrary to popular belief, I like kids. They can be fun to hang out with (for a while). They say some hilarious stuff. And, similar to those with dementia, I often find myself enjoying their brutal honesty.

Kids, however, don’t have very interesting stories. It’s not their fault, of course. They just haven’t been here long enough to develop their stories. They also don’t get to make a lot of their own decisions, which limits the twists and turns their stories can take. Give me an 80 year old any day of the week.

When I was a kid, I read “Choose Your Own Adventure” books. You’d get the end of a chapter and have a message like, “If you want to go in the house and see what’s causing the noise, turn to page 33. If you want to call the police, turn to page 43.” You come to a crossroads, and you have to make the call.

How many times has an 80-year-old had to make a life-changing decision, whether they realized at the time it would change their life or not? More times than a kid…of course….which is why I’m a gerontologist and not a child psychologist. Older adults have life histories rooted in contextual details that I can’t fully understand—the Great Depression, the Vietnam War, the racial tension of the 60’s. The choices they’ve made are linked to the times and places they’ve experienced. People are not independent of historical context…because people are history.

I don’t know if it’s better to lose your short-term memory before your long-term memory or vice-versa. And it’s irrelevant to overanalyze this because we aren’t given a choice in what we lose when dementia strikes. A compromised short-term memory certainly impacts your daily functioning, and it’s one of the main reasons we have to limit the independence of those who have dementia. Having problems with your short-term memory is tough, and that’s an understatement.

However, I sometimes feel fortunate that it’s the long-term memory that sticks around when the short-term memory fails. To be honest, I am more interested in a person’s stories about what happened 50 years ago than their stories what happened this morning.

I guess I don’t hate history after all. I just didn’t really know what history was when I was in school.

The Awesome People I Meet in Dementialand

Sometimes I get on a streak where I write sad posts, and I’ve been on one of those streaks lately. To Dana and Sarah…I’m sorry I made you guys cry at work. I promised myself that today I would write something happier–at least less sad. So here goes…

I used to visit a particular nursing home quite frequently. I’d see a couple sitting by the nurse’s station. They were both in wheelchairs and looked quite frail. Sometimes they were holding hands. They talked a bit but not much. Their conversations didn’t make much sense to me, but somehow they seemed to get each other.  They had an undeniable connection and words seemed unnecessary.

I don’t know if they seemed happy…maybe comfortable is a better word. I usually said a quick hello to them as I passed. The man would just smile at me, and the woman would typically respond with a smile and a “Hi, honey.” Honestly, I didn’t really think twice about them or their relationship.

However, one day I entered the nursing home and noticed another woman sitting with them. She was well-dressed with fresh make-up and a bright smile. She had pulled up an uncomfortable-looking tacky floral chair on one side of the man and was holding his hand. The other woman, in the wheelchair, was sitting on the other side of the man and holding his other hand. As usual, I greeted them as I passed. The woman in the wheelchair responded, as did the other woman.

I couldn’t be sure of it at the time, but eventually I confirmed that the well-dressed woman was, in fact, his wife of over 40 years, who I will call Lynn. She lived about 45 minutes away and visited her husband, Joe, three or four days a week. She felt a bit guilty she couldn’t be there more, but she had a part-time job and also provided care to her grandchildren.

As time went on, it became my routine to make small talk with Lynn if she was present when I arrived at the facility. While we chatted, she would usually be holding her husband’s right hand while the other woman clung to her husband’s left hand.

The woman in the wheelchair? Her name was Zelda (or at least that’s what I will call her). She had Alzheimer’s, like Joe did. After Joe moved into the nursing home, he developed a sort of attachment to Zelda. When he saw her, he’d slowly maneuver his wheelchair close to hers and grab her hand. If he couldn’t find her, he’d use his shuffling feet to move his wheelchair around the building looking for her. If they were seated separately in the dining room, he’d move his wheelchair so he could eat next to her. The staff learned to seat them together. At one point, Zelda was admitted to the hospital. Joe seemed anxious while she was gone.

He didn’t know Zelda’s name, but if you asked him whose hand he was holding, he’d say, “This is my wife.” He’d usually follow with something like, “Isn’t she beautiful?” Once in a while, he’d kiss her hand or pat her knee.

One day I walked into the nursing home and saw that Lynn had brought ice cream sundaes from Dairy Queen. She was feeding Joe tiny bites. Zelda was right there, too. Lynn was feeding her bites as well. One bite for Joe; one bite for Zelda. All three were smiling. That was when I realized that Lynn was an incredible person.

As time went on, I learned more about Zelda. Her husband had passed away years ago. Her kids lived far away, and she seldom had visitors. She had been a nurse in the very same nursing home in which she now lived.

Early on, the staff to tried separate Zelda and Joe if they expected Lynn would be visiting. Joe’s caregivers liked Lynn, and they didn’t want to cause her any pain. However, that only worked for a few weeks. One day Lynn arrived and found Zelda and Joe holding hands by the nurse’s station. A nurse pulled her aside and apologized.

“She told me she knew it was hard for me to see him with her like that,” Lynn told me. “But it really wasn’t. It was a good feeling.”

My husband doesn’t have Alzheimer’s. I don’t know what it’s like to have a spouse who doesn’t recognize me. I don’t have a sense of what it’s like to see my husband holding hands with someone else–someone who he thinks is his wife. I have no idea how I would react in this situation. And I have no idea how others would respond if they were in Lynn’s shoes. I am curious how many would be able to say it was a “good feeling.” I’m guessing it wouldn’t be many.

Lynn liked the idea that her husband wasn’t alone when she couldn’t be there. She pointed out that she was only able to be there about a few evenings a week, and it brought her comfort to know Zelda would be sitting with Joe when she wasn’t visiting. Lynn even included Zelda when their family gathered in the nursing home lounge to celebrate holidays and birthdays. If anyone in Lynn’s family wasn’t comfortable with that, they didn’t mention it to Lynn. Zelda lit up when she saw Joe and Lynn’s grandchildren enter the facility. Lynn wasn’t about to tell Zelda she couldn’t hang out with them. A staff member told me that Lynn even bought Zelda a teddy bear and some of those fuzzy sock slippers for Christmas. They were the only presents she got.

As I got to know Lynn better, she told me that she feared Zelda would pass away before Joe, and then Joe would feel lost and lonely. She wondered aloud if she’d still visit Zelda if Joe died first. It bothered her to think of Zelda not having any visitors.

I told you this wouldn’t be a sad post, but maybe that was a bit misleading. It is undeniably sad that Alzheimer’s can cause a loyal spouse to literally forget he has a wife. It can make a man unaware that the person whose hand he is holding isn’t the person to which he committed to for life. It can cruelly rob individuals and their loved ones of the relationships that are most important to them.

And that’s why, as Lynn told me, you can’t take the pleasures and comforts that it leaves behind.

“Alzheimer’s has taken so much from him. I’m not going steal one of the few comforts he has left,” she said, referring to Zelda.

I find that the most amazing love and most incredible kindness are often found in the situations that seem the most hopeless. Lynn never expected her husband would have Alzheimer’s. She never expected he’d forget her or that he’d spend his days holding hands with another woman. Somehow…and I don’t know exactly how…when she found herself in that situation, she fed them both ice cream and did it with a smile. And she bought her husband’s friend new slippers.

When asked about it, she says with a shrug, “Well, what else am I gonna do?”

There are some awesome people in this world.

And that’s why this post isn’t (all) sad.