I spent a few hours with Mom at Legacy yesterday.

When I got there, she was wrapping up her lunch, so I sat with her for a while before we eventually made our way back to her room. The minute I opened the door, though, I was blasted with the smell of urine. A lot of urine.

Thankfully, Mom can’t really smell anymore, which in this particular instance might be one of the few gifts Alzheimer’s has given her because she would have hated it. Her bed hadn’t been made yet, the bed protectors had pee stains all over them, and there were soiled clothes in the hamper in the bathroom.

So I started cleaning.

I stripped the bed, found new protectors and fresh bedding, and got everything put back together.

Once I had the bed taken care of, I decided Mom’s fingernails needed some attention, so we went into the bathroom and I started clipping them.

She did NOT appreciate this.

I still can’t quite figure out what has happened to Mom’s pain threshold. This is the woman we used to joke couldn’t feel pain. She was one of the toughest people I’ve ever known, and now the slightest poke or pinch can make her cry out like she’s being tortured.

Yesterday, apparently, I was the torturer.

She winced and whimpered and pulled her hands away, looking at me like I had betrayed everything sacred between a mother and daughter. I apologized while continuing to clip her nails because, well, they still needed clipping.

Eventually she’d had enough of me and wandered out of the room.

Fair enough.

I turned my attention to her closet, which was a complete mess. Clothes, towels and bedding were all mixed together and shoved into various places. I could imagine one of the staff members coming in with a pile of clean laundry and trying to figure out where the hell everything goes while also having about seventeen other things that needed their attention.

God bless them. Seriously.

I can reorganize a closet on a rainy Saturday afternoon. They are the ones caring for my mom on all the days and hours when I’m not there.

So I started sorting things out, and somewhere in the process I discovered a pile of clothes that weren’t Mom’s at all.

This happens with surprising regularity at Legacy. Things just...migrate.

Clothes migrate. Stuffed animals migrate. Baby dolls DEFINITELY migrate.

In fact, Mom’s baby collection is quite the sight. There are now babies everywhere. Babies in chairs. Babies tucked in with giant teddy bears. Babies hanging out with stuffed animals. One particularly baby (AKA Gretchen) was sitting upright on a table with a bag of snacks, looking like she had some business to attend to.

There seems to be an entire underground economy operating in memory care that none of us fully understands. (I’m thinking about a screenplay….)

I kept sorting.

At some point, I needed to use Mom’s bathroom. I lifted the toilet seat and discovered a lovely turd smeared across the whole thing.

I just stood there for a second.

And then I started laughing.

Because, really, what else are you going to do?

I was completely grossed out and, at the same time, not particularly surprised. I found some cleaning supplies and did the best I could.

Pee-stained bedding. Fingernails. Mystery laundry. Wandering babies. Toilet-seat turd.

Life is so glamorous in memory care.

Once I’d restored at least a little order to Mom’s world, I went looking for her and found her in the great room watching Little Women. I sat down next to her and we talked for a while. Well, we talked in Momalese. Mom said things I didn’t completely understand, I responded as though I did, and, somehow, we understood each other.

I took a cute little video of her to send to Dad, Trevor and Mindy and hopefully for Lydia to share with our Dementia WTF community. I love capturing these little glimpses of Mom because sometimes a 30-second video communicates her better than anything I could possibly explain. There she is. Still Mom.

After a while, she leaned back in her chair and started to doze off.

That was my cue.

Dad was at the cabin meeting the Easy Dock installer, and I found myself feeling happy about that too. He got to be at the cabin taking care of something completely ordinary while I got to spend the afternoon with Mom. Another day he’ll be the one at Legacy and I’ll be somewhere else.

I think we’re all getting better at that.

There was probably a time when one of us would have felt guilty about not being there. Alzheimer’s has a way of convincing you that if you really love someone, you should always be doing more. Visiting more. Watching more closely. Fixing more things. Somehow preventing the next bad thing from happening.

But nobody has to stop living for Mom to keep being loved.

Before I left, I went back to her room one more time. The smell was gone. Her bed was clean and inviting again. Her closet made sense, at least for the moment. I’m under no illusion that it will stay that way. By Tuesday, someone else’s pants may be back in there and Mom may have acquired three more babies.

But standing there, I felt strangely gratified.

Nothing I had done that afternoon was particularly remarkable, and somehow all of it mattered.

I hadn’t created some beautiful memory I could be sure she would carry with her. I hadn’t solved anything, really.

I had just tended to her little corner of the world for a while. And that felt really good.

Clean sheets. Trimmed fingernails. Folded clothes. A cleaned toilet. A conversation in Momalese. A daughter sitting next to her watching Little Women.

I felt like I was leaving little sprinkles of love in the air.

And then, as I was getting ready to leave, I realized I had not placed the Doorway Blessing card.

I need to print one for her room.

Actually, I think I’m going to print a few. Maybe some of the other doors at Legacy need one too.

I stood there thinking about all the tiny things we do for the people we love that nobody really sees. Changing the sheets. Hunting down a missing sweater. Straightening a photograph. Cleaning something disgusting. Putting things back where they belong. Sitting next to someone and listening intently to words you don’t completely understand.

The invisible housekeeping of love.

None of it fixes dementia. But maybe that’s not the point.

Maybe sometimes love is simply tending to someone and to the little world around them. Noticing what needs noticing. Making things a little softer, cleaner, safer, more familiar. Leaving behind a few sprinkles of love in the air.

And then letting yourself go home.

Yesterday, I walked out of Legacy feeling good. Not devastated. Not guilty. Not like I should have stayed longer.

Just grateful that I got to spend a rainy Saturday afternoon with my mom.

Even if it involved pee, poop and a very contentious manicure.

Oh, the dementia life.

It is so fucked up.

And God, it can be beautiful too.

My son got married on Saturday.

Even writing that feels strange. My baby boy is married.

For the week leading up to Andreas and Jo’s wedding, my brain was consumed by all the things you would expect: food and flowers and ice and appetizers, who was arriving when, what still needed to be transported, and the persistent suspicion that I had forgotten something important. At the same time, I was still carrying around pieces of work in my head and trying to wrap my mind around the fact that my son was about to get married. There were a lot of tabs open.

Underneath all of that, though, something else kept surfacing.

I kept thinking about the women.

I thought about my own wedding and my girlfriends’ weddings, my parents’ marriage, and all the rituals and traditions that surround these moments when families change shape. I thought about the women who have accompanied me through different versions of myself and how many of them had, in one way or another, helped love Andreas into the man he has become.

Some of them were coming to the wedding. My girlfriends Stormi, Tami, and Carrie would be there. Stormi has been Andreas’s godmother since he was a baby. Tricia would be there too, beside me for this enormous family moment while she and I are building this entirely different chapter of our lives together through Mayfly.

And some of the women I wanted there couldn’t come.

James’s mom, Katie, died in 2012. Our dear friend Cassie has been gone for 25 years. Merica has been gone for 4 years. My grandmothers Jane, Helen, and Lady Elaine are all gone too.

And then there was my mom.

Mom is still alive, which sometimes makes missing her even harder.

Alzheimer’s is such a fucking rip-off.

Yup. I said it. There’s no other way to put it.

There is a particular kind of grief in having your mother alive but unable to be at her grandson’s wedding. She’s here, and she isn’t. I wanted her to know Andreas was getting married. I wanted her to see Jo and the beautiful family Andreas was joining. I wanted her to see the ribbons blowing over the yard, the mountains surrounding us, and the moon rising into the evening sky. I wanted her standing inside that circle of family and friends while Sophia officiated her brother’s wedding.

I wanted my mom there.

The night before the wedding, we went out onto our front porch and sat on the swing. I smoked a clove cigarette, something I used to do with Katie. I sat there swinging and smoking and thinking about all these women. Katie. Cassie. Merica. Jane. Helen. Lady Elaine. Mom.

I was conjuring up the elders.

A few days earlier, my dad had sent me an old photograph of Mom that completely caught me off guard.

She’s sitting outside under a huge tree at Ruth’s Diner, holding up a glass of red wine and smiling straight at the camera. She and Dad had just finished a bike ride up Emigration Canyon. I cried when I saw it because I missed her, but there was something else too. I could see myself in her eyes.

Then I noticed her shirt. My girlfriend Carrie had them made for all of us years ago. There was a mayfly on it, along with the words, “Live Like a Mayfly.”

The photograph was taken five years before Tricia and I ever started Mayfly Enterprises.

Of course it was.

And then Saturday came.

I don’t quite know how to describe the wedding without sounding ridiculously sentimental, except to say that it was truly magical. The decorations were beautiful. The food and drinks were wonderful. People laughed and talked and danced. The mountain sky put on a show for us, and the moon rose over the wedding party. Andreas and Jo stood together in a circle of family and friends while his sister married them.

People had traveled from all over to show up for them, and they showed up for us too. Jo’s family was warm and generous and wonderful. My girlfriends showered me with love, gifts, attention, and the kind of care only old girlfriends know how to give. James was so tender through all of it. Everywhere I looked, someone I loved was loving someone else I loved.

At one point, we gathered everyone together for a family photograph.

My dad pulled out his phone and held it up.

On the screen was a picture of Mom.

He wanted her in the family picture.

That pretty much did us all in.

It was such a simple gesture, but there she was, right in the middle of us.

And after that, I started seeing her everywhere.

I could see her spark in the eyes of my family. I could see her smile in my sister Mindy’s smile. I could see her in Andreas and Jo’s embrace and in the way James and I looked at each other as we watched our son begin his marriage.

Later, “Harvest Moon” started playing.

Of course it was “Harvest Moon.”

My dad danced with Mindy, and as I watched the two of them together, I thought about Mom again. For a moment I wondered whether Mindy was standing in for her, dancing with Dad as some kind of proxy. But the more I’ve thought about that moment, the less I think anyone was standing in for anyone.

Dad was dancing with his daughter. Maybe he was remembering dancing with his wife. Maybe Mom was there in Mindy’s smile and Dad’s memory and Neil Young singing that familiar song. Maybe all of those things were happening at the same time.

I’ve been thinking about presence ever since.

We tend to think being present means having a body in the room, and I don’t want to romanticize what Alzheimer’s took from us. I wish Mom had been physically there. More than that, I wish the version of her who could understand that her grandson was getting married had been there. I wish she could have danced with my dad herself.

That loss is real.

But so was her presence.

She was there in the stories we told and the faces she helped create. She was there when Dad held up his phone. She was there in the rituals and songs and gestures we have inherited from one another. She was there in my love for Andreas and in his love for Jo. She was there in my marriage to James as we stood together watching our son begin his own.

Maybe this is part of what it means to carry people with us. They become woven so thoroughly into who we are that physical absence cannot make them entirely absent.

Before the wedding, I thought I needed to conjure the elders.

Now I think I had it backward.

They had been gathering all along.

Andreas took his new wife into his arms that night, closed his eyes, and held her. Around them stood a circle of people who love them and who had come to witness the beginning of their marriage.

Looking at the pictures now, I can almost see another circle around that one.

Katie. Cassie. Merica. Jane. Helen. Lady Elaine.

And Mom.

Especially Mom.

Somewhere in my mind, she’s sitting under a big tree on a patio, smiling at all of us with a glass of red wine raised in her hand.

And wearing a mayfly on her shirt.

Of course she is.

Definition: A highly expressive, sometimes joyful, sometimes irritated language spoken by my mom, and perhaps other people living with dementia, in which tone, facial expression, hand gestures, and love carry far more meaning than vocabulary.

Fluency: Requires patience, curiosity, and an open heart. Translation is optional.

Example used in a sentence: “Mom spoke fluent Momalese for twenty minutes today. I didn’t understand a single word... but somehow I understood everything.”

So I think my mom has invented a new language.

Actually, I think she’s been speaking it for a while. We just hadn’t given it a name.

Mom has Alzheimer’s, and over the past year or so, her spoken language has changed quite a bit. There are still plenty of real words in there, and occasionally an entire perfectly constructed sentence comes flying out. But increasingly, those words are surrounded by other words, or sounds that seem very much like words to her that the rest of us have absolutely no hope of direct translation.

And yet she talks.

Oh boy, does she talk.

She tells stories. She asks questions. She makes declarations. She leans in when something is especially important. Her voice rises and falls. She pauses or gestures for added effect (“tch-tch-tch” with machine gun gestures). She looks at you expectantly when it’s clearly your turn to respond.

There is syntax. There is cadence. There are plot twists.

There just aren’t always...words that make sense.

For a while, I didn’t know what to call it. I would tell people, “Ya know, Mom speaks a different language now.” Or I’d say that she was babbling, which is technically accurate but doesn’t quite capture the experience. Because babbling makes it sound as though there isn’t anything being communicated.

Spend five minutes with my mom and you’ll know that’s definitely not true.

So today, while Lydia, Tricia, and I were texting about some videos for Dementia WTF, I found myself trying to explain a video I’d uploaded of Mom and me. She’s sitting there holding the giant teddy bear Dad recently brought her, talking away with great enthusiasm.

I texted them:

“I’m not quite sure WHAT she’s saying...but I GET what she is saying, if you know what I mean.”

And that’s when it occurred to me.

Momalese.

Mom speaks Momalese!

I called Dad tonight and told him we’d finally identified Mom’s language. He immediately loved it. We laughed about how completely appropriate it is.

And Dad knows. He’s probably the most advanced Momalese speaker among us.

A Brief Guide to Momalese

As far as I can tell, Momalese has a few basic rules.

Grammar is largely optional. Nouns are helpful but certainly not required. Pronouns are decorative. Time is fluid. A string of sounds or words may begin in the present, maybe wander through 1954, and conclude somewhere that has yet to occur.

Context clues are extremely important.

So are eyebrows. So are hand gestures.

A single recognizable English word may appear unexpectedly in the middle of an otherwise incomprehensible paragraph, and when it does, you grab onto that sucker like you’ve just heard your name announced at the airport.

BABY!

Yes! Baby! We’re talking about the baby!

Except there is no baby.

There is, however, a four-foot teddy bear.

Close enough. We’re back in.

There is also a particular quality to Momalese that I can only describe as Joyberish. When Mom gets going, she can be wonderfully animated. Sometimes she seems so delighted by whatever she is telling me that I find myself laughing along with her, even though I have absolutely no idea what we’re laughing about.

It seems strange but I think I’m getting pretty good at this language.

I can’t translate Momalese word for word. Nobody can. But I’ve started to understand the parts that matter.

I know when she’s excited. I know when she’s teasing me or giving me a compliment. I can tell when she’s telling me something important or scary and when she thinks something is hilarious. I know when she wants me to look at something. I know when she wants me to agree with her. And I definitely know when I have given an inadequate response and she expects me to pay better attention.

She’s still my mom, after all.

I think there was a time when I worked much harder to understand the actual words. My brain would search through the sounds, trying to catch something recognizable so I could figure out what she meant. Sometimes I’d ask her to repeat herself, which, as you might imagine, did very little to improve the situation. I was trying to translate Momalese into English.

Now, I mostly let Momalese be Momalese.

I watch her face. I listen to her tone. I follow her eyes. I notice when she lights up. I respond to the feeling of what she’s telling me, and somehow, most of the time, we manage to have a perfectly decent conversation.

Sometimes a hilarious one.

It has made me think differently about what it means to communicate with someone whose language is changing because of dementia. We put so much value on words. Of course we do. Words are how we explain ourselves, tell our stories, ask for what we need, tell someone we love them.

But words aren’t the only way we do any of those things.

My mom is showing me that every time I visit her.

There is so much information in a face. So much meaning in the way someone reaches for your hand. There are questions in raised eyebrows and whole paragraphs in laughter or a dance. There is an unmistakable difference between a happy story and an irritated one, even when you couldn’t transcribe a single sentence of either.

Maybe fluency at this stage of dementia means giving up the need for a perfect translation.

I’m learning her language instead.

And I have to tell you, once you get the hang of it, Momalese is pretty damn fun…and funny.

So if someone you love has started speaking a language you don’t quite understand, you might try listening differently. Stop worrying so much about the nouns. Pay close attention to the eyebrows. Laugh when they laugh. Let the story go wherever it’s going.

You may discover you’re more fluent than you thought.

And if all else fails, just smile, nod knowingly, maybe give a little wink, and say:

“Ohhhhhhh girrrrlll. I KNOW.”

Works in Momalese almost every time.

Does someone you love speak their own version of Momalese? Tell me about it in the comments. I have a feeling there are a whole lot of us becoming bilingual. ❤️

Funerals are funny that way.

You expect them to be about death.

Instead, they’re usually about life.

My brother flew in from California on Friday, and before we drove to Idaho Falls, we stopped to see Mom.

She didn’t really recognize Trevor.

But she had something even more important on her mind.

Dad had brought her a giant teddy bear the day before, and she was cradling it like a newborn baby.

It was one of those moments that would make absolutely no sense to someone walking past.

To us, it made perfect sense.

We shared lunch together.

Trevor and Mom talked.

Well...

“Talked.”

Mom speaks a different language now.

If you listen for words, you won’t understand.

But if you watch her eyes...

her smile...

her hand gestures...

the way she turns toward someone she loves...

you realize she’s saying plenty.

You just have to learn a new language.

Saturday morning we gathered for Uncle Mike.

He was 89.

The room was filled with old friends, cousins, neighbors, people who had known our family forever.

Again and again people stopped me.

“Cori...”

“You look so much like your mom.”

One old friend said it literally took his breath away when I walked through the door.

I’ve been thinking about that ever since.

Because I don’t think I look that much like my mom.

At least not in the mirror.

But maybe that’s not what they meant.

Maybe they saw something I couldn’t.

Maybe what I was carrying into the room felt familiar.

Mom has always loved gathering people.

She loved celebrating birthdays.

Hosting parties.

Making people feel welcome.

Finding something to laugh about.

Maybe those things become visible.

Maybe love has a face.

Maybe joy does too.

We had it all last weekend.

Grief.

Regret.

Old family stories.

Forgiveness.

Children.

Puppies.

Friends who hadn’t seen each other in years.

Dinner.

Laughter that surprised us by sneaking up in the middle of tears.

It reminded me that life doesn’t organize itself into neat emotional boxes.

Joy and grief go hand in hand.

The Alzheimer’s journey has been teaching me this for years.

I’m learning to let grief wash over me without letting it pull me under.

I’m learning to enjoy the version of my mom who is here today instead of constantly reaching for the one who used to be.

I’m learning to live my own life more fully.

Without apologizing for it.

Without carrying guilt everywhere I go.

Those lessons might be Mom’s greatest inheritance.

Not her eyes.

Not her smile.

Her way of moving through the world.

Thank you, Uncle Mike, for bringing us back together.

And thank you, Mom.

For reminding me that maybe what we leave behind isn’t just what people remember about us, but rather what they begin carrying inside themselves.

And maybe that’s what people saw when they looked at me.

Not my mother’s face, but my mother’s way of moving through the world.

And if that’s true, I can think of no greater inheritance.

Today, though, I got one from the clouds.

I was out on a mountain bike ride through the forest near our family cabin in Montana when something made me look up.

The sky was alive.

Thin wisps of clouds stretched across a big Montana sky, changing shape, shifting, flowing. Every few seconds, they became something different. I found myself slowing to a stop, completely captivated.

The clouds made me think of my mom.

As Alzheimer’s progressed over the years, she developed a habit of looking up.

She points out clouds.

She follows the white trails airplanes leave behind.

She points out birds.

Sometimes she’ll point toward something only she seems to see.

For a long time, I assumed she was simply distracted. I thought it was cute.

Now I’m starting to wonder if maybe she’s paying attention in a way I’ve forgotten how to.

I have no idea what she sees when she looks at the sky.

I just know that she taught me to look up today and really notice the clouds.

A few miles later, I came around a bend in the trail and found a fallen tree lying across my path.

I got off my bike, lifted it over the trunk, and climbed across with a few scratches. Then I kept on riding.

I was still thinking about my mom and what signs nature is sharing with us. The tree didn’t feel like an obstacle.

It just felt like part of the ride and a reminder that we often hit these little road bumps.

Maybe because I’d already been looking up and paying attention.

Whatever the reason, I didn’t spend a second wishing the tree weren’t there.

I stepped over it.

Got back on my bike.

And kept turning the pedals.

As I rode farther, I started noticing everything.

The tiny purple wildflowers tucked into the grass.

The daisies dancing in the breeze.

The towering pines reaching toward the sky.

The sunlight filtering through the branches.

Maybe that’s the gift of looking up.

It changes how we see everything else.

Caregiving has a way of narrowing our vision.

The stress of showering and bathing a loved one who can’t do it themselves any more.

Scheduling appointments we know are going to be tricky to manage.

Making sure the medications are right.

Figuring out the insurance.

The next crisis.

The next decision.

It’s easy to spend so much time looking down at what’s immediately in front of us that we forget there’s still a whole sky above us.

A whole world continuing to unfold.

Tonight, I keep thinking about my mom.

I wonder if she looked up today.

I wonder which cloud caught her attention.

I wonder what she saw.

And tomorrow morning, wherever I am...

I think I’ll remember to look up.

P.S.

If someone you love has dementia, have you noticed them paying attention to something you never used to notice?

I’d love to hear your story in the comments!

Memory care is one of those jobs.

Until my mom developed Alzheimer’s, I don’t think I gave much thought to the people who spend their days helping someone eat lunch... changing someone’s clothes... calming someone’s fears... convincing someone to take a shower or go to the bathroom... celebrating a birthday.

Now I think about them all the time.

My mom celebrated two birthdays this year.

Dad and I hosted one of them on Saturday, the day after her birthday.

My dad reserved the Wilmington Room at The Legacy Village. We invited some of Mom and Dad’s longtime friends. I ordered food for brunch, Dad brought flowers and a mimosa bar, my mom’s friend brought more fruit and acake, and we spent the late morning and into the afternoon eating Kolaches, listening to favorite songs, dancing, and laughing.

It was lovely.

She smiled.

Dad was happy.

There was a sweetness in the room that felt familiar.

But the birthday I keep thinking about was the day before, her actual birthday, when I wasn’t there.

Of course, I was at work. But the staff at The Legacy decided that my mom needed a birthday party!

There were balloons tied to her chair.

Cake.

Ice cream.

Happy Birthday sung with genuine enthusiasm—and even a version in Swedish.

Dad sent me photos and a video.

There was Brock—The Legacy’s activities concierge extraordinaire—doing what Brock somehow always does.

Creating joy.

If you’ve never met him, it’s hard to explain.

He’s one of those people who seems to know exactly where someone’s spark is hiding.

He finds it.

Then somehow convinces it to come out and play.

Last year during a Drag Show party in the Fairmont room downstairs, he got my mom onto the dance floor and talked her into doing the Chicken Dance.

The Chicken Dance! In the middle of a crowded dance floor, looking directly into the eyes of my adoring mom.

She laughed.

He laughed.

Everyone laughed.

It’s one of my favorite memories.

Then something happened on Saturday that made me realize Brock isn’t the exception.

He’s part of something much bigger.

After our family party, I walked Mom back to her apartment.

One of the caregivers asked if I wanted help getting her changed before she rested.

“I think I’ve got it,” I said. But in the back of my mind I was asking myself, “Do I really have it?”

Nicole came in a few minutes later.

Now, if you’ve cared for someone with dementia, you know clothing changes can become serious negotiations.

My mom does NOT enjoy taking her clothes off.

Nicole smiled, got right down on the bathroom floor by the toilet, and then performed what I can only describe as a magical caregiving maneuver.

She swiftly removed Mom’s pull-up diaper by gently tearing the sides and pulling it off without a wink.

Then she somehow put a clean one on.

Mom’s shoes never came off.

Her pants barely moved.

There was no struggle.

No frustration.

No embarrassment.

It was over in what felt like thirty seconds.

I just stared at her.

“What... just happened?”

She laughed.

“Yeah, I was really excited when someone taught me that trick.”

A trick.

That’s what she called it.

I kept thinking about that word.

Because from where I was standing, it looked less like a trick and more like years of experience wrapped in gentle kindness.

She wasn’t just changing a brief.

She was preserving my mom’s dignity.

One of the hardest parts of caregiving is guilt.

I’ve written about it before.

The guilt of leaving.

The guilt of traveling.

The guilt of laughing or experiencing too much joy.

The guilt of not visiting enough.

Somewhere along the way things have started shifting inside me.

The guilt isn’t completely gone. (I’m not sure it ever disappears.)

But I’m not wracked by it anymore.

I think one of the biggest reasons is because I trust the people who are loving my mom every day and night when I’m not there.

What a gift that is.

I know not every memory care community is like this.

I know we’re incredibly fortunate that my dad has been able to choose a place like The Legacy.

I don’t take that privilege lightly.

But buildings or the company don’t create this feeling.

The people do.

The women—and yes, a few wonderful men—who care for my mom every day have become part of our family’s story.

They know how she likes her food.

They know how her favorite music might help.

They know which song or dance might get a smile.

They know impossible diaper-changing techniques.

They celebrate birthdays when families have to be at work.

They notice.

They remember.

They care.

Every day they walk into work caring for someone else’s mother...

or father...

or spouse...

or best friend.

They hold hands.

They redirect fear.

They celebrate tiny victories.

They create ordinary moments that become extraordinary memories for families like mine.

And then they come back the next day and do it all again.

I still think my dad and I threw a pretty nice birthday party.

The roses my dad got for my mom were beautiful.

The kolaches and mimosas were delicious.

The company was perfect.

But I have a feeling my mom would tell you the cake and balloons were pretty great too.

And I would have to agree.

P.S.

If you’ve ever had a nurse, CNA, activities director, hospice worker, home health aide, or memory care caregiver who changed your family’s story, I’d love to hear about them.

Let’s give these quiet heroes the recognition they rarely ask for—but absolutely deserve!

You just keep moving.

Looking back now, I realize there are whole years I barely remember.

Not because of dementia.

Because my nervous system couldn't hold them for me.

At the time, I didn't understand that.

I just knew something felt wrong.

There was a season when I couldn't stand to be touched. Not emotionally. Physically. Ifsomeone touched my skin, it hurt. I knew my nervous system was on overdrive, but I didn't have the words to explain it.

It wasn't until recently that my daughter Magnolia, who's studying psychology, held up a mirror for me.

She told me there's research showing that when we're living through trauma, our nervous system narrows its focus to one thing: survival. It doesn't store every memory. It doesn't preserve every detail. It simply gets us through.

Suddenly, those missing years made a little more sense.

For the first time, I stopped blaming myself for forgetting them.

It also changed something I'd written months earlier.

In one of our Dementia WTF newsletters, I encouraged caregivers to take pictures.

Write things down.Save the ordinary moments.

At the time, I thought I was talking about preserving memories for the person living with dementia.

I wasn't.

I was talking about us, too.

Because sometimes the caregiver is surviving so completely that pieces of their own story quietly disappear.

I wish I had left myself more breadcrumbs.

Not because I want to relive those years.

But because I'd love to sit beside that younger version of myself and whisper,

"You're going to make it."

If someone had asked me back then how I was doing, I already knew my answer.

"I'm fine."

The funny thing is...

that answer started as a family joke.

When Magnolia was just a toddler, we'd spend afternoons swimming at my mom's house. Every time she floated past the pool intake in her little arm floaties, she'd quietly say to herself, just loud enough for the rest of us to hear,

"I'm fine. I'm fine."

We laughed every single time.

My mom especially loved it.

From then on, whenever someone asked,

"How are you?" one of us would answer in our very best little Magnolia voice,

"I'm fine!"

It became part of our family.

Somewhere along the way...

"I'm fine." stopped being a family joke.

It became my answer too.

Except I wasn't saying it because it was funny.

I was saying it because I genuinely didn't know what else to say.

For years, I wondered why I never stopped long enough to ask myself one simple question.

How are you... really?

Now I think I know.

If I had stopped long enough to discover I wasn't fine...

I wasn't sure I could ever find my way back.

So...

"I'm fine." became the story I told myself.

Not because it was true.

Because it was the story I needed to survive.

Looking back now, I finally understand her.

One of the things we get wrong about survival is that we imagine it looks heroic.

Looking back, it didn't.

It looked like therapy appointments.

Family meetings.

Going to work.

Memory care visits.

Unpacking the laundry basket... again.

Paying bills.

Making dinner. And answering one simple question with two simple words.

"I'm fine."

When you're surviving, your job isn't to make sense of the darkness.

Your job is simply to make it to tomorrow.

If you find yourself in a season where that's the only answer you can give...

Honor it.

Not because it's the whole truth.

But because it may be the truth your nervous system needs today.

And when life finally holds up a mirror...

Look.

Not with judgment.

With compassion.

You just might discover that those two little words carried you farther than you ever realized.

That the version of you who kept saying,

"I'm fine," was never weak.

They were surviving.

And maybe...

that may be one of the strongest things you've ever done.

P.S.

Some family stories never die.

My brother and sister-in-law had this sweatshirt made for Magnolia after years of hearing her little pool mantra.

She has proudly never worn it once!

It’s on Hebgen Lake, just outside West Yellowstone, and I’ve been coming here since I was born. My grandpa bought the place in 1949. Four generations of our family have laughed here, waterskiied here, celebrated here, mourned here. Our family friends next door who live in Southern California arrived earlier in the week. Without skipping a beat, we were all doing what people do in places like this. We immediately connected, telling the same stories we’ve told a hundred times and somehow laughing even harder than the last time.

Today also happened to be my son Andreas’s 28th birthday.

We spent the day celebrating, surrounded by family, soaking in the Montana rain and sunshine, sharing good food, telling old stories, and making new memories. As I watched Andreas laughing with the people who have loved him since he was a little boy, I couldn’t help but think about all the birthdays my mom celebrated with him over the years too.

Her absence was there.

But so was her presence.

During dinner, my dad and I found ourselves talking quietly.

He admitted something that I had been feeling too.

“It’s hard being here without Deidra.”

It is.

Every trail reminds us of her. Every meal. Every silly family tradition. There is an empty spot everywhere we look.

But then our conversation shifted.

Dad said something I’ve been thinking about ever since.

As Mom’s Alzheimer’s has progressed, she doesn’t really need him the way she once did.

That sentence carries so much grief.

For years, his purpose has been wrapped up in caring for her every day. Mine has too, in many ways. Our lives have revolved around making sure she’s okay.

But lately I’ve been wondering if something else is happening.

Mom is still here.

She still has that sparkle that sneaks out in unexpected moments. She still says funny things that make us laugh our asses off. She still reaches for connection. She is still our Deidra.

And...

She’s changing.

I don’t know exactly how to explain this, but I’ve begun to wonder if, in some quiet way, she knows we’re okay.

Maybe she knows that there is a part of this journey we can’t take for her.

Maybe she knows that our lives are meant to keep unfolding too.

Of course we’ll always show up for her. We’ll always love her. We’ll always make sure she’s cared for.

But maybe loving her no longer means living every moment inside the walls of the Legacy memory care unit.

Maybe it also means fully living the life she and my dad spent decades creating for us.

Before going to bed, I stepped out onto the deck.

The full moon kept slipping behind the clouds, teasing with glimpses of light. The lake was alive with little splashes from fish breaking the surface. Night birds called across the water. The pines stood exactly where they’ve always stood, reaching toward a sky that somehow feels bigger in Montana than anywhere else.

Standing there, I felt something shift.

Dementia has a way of shrinking your world.

One building.

One room.

One daily schedule.

One person you love.

Without realizing it, your whole life begins orbiting around loss.

But the moon reminded me of something.

Even when I couldn’t see it, it was still there.

The lake was still there.

The trees were still there.

Life was still happening all around me.

And somehow, I knew Mom was part of it too.

She’s the reason I know how to love this place in the first place.

She and Dad gave us this life.

They gave us summers at the cabin, Fourth of July celebrations, lifelong friendships, laughter around crowded tables, gratitude for beautiful places, and the ability to stop and notice the sound of birds calling across a lake.

Those gifts don’t disappear because she has Alzheimer’s.

They’re still alive in us.

As I stood under that enormous Montana sky, I reminded myself of something I think I needed, and I hope my dad can hear this too.

Life is bigger than dementia.

Dementia is certainly heartbreaking but love is bigger.

Family is bigger.

Nature is bigger.

Generations are bigger.

We’re all held by something larger than the hardest thing we’re carrying at any one time.

Over the last few months, I’ve been feeling something I hadn’t expected.

Permission.

Permission to keep living a full, beautiful life.

Not instead of losing my mom or even loving my mom.

But because of her.

P.S. If you’re caring for someone with dementia, I’d love to know: Have you had a moment when the world suddenly felt big again? I’d love to hear your story!

We went to the Zootown Music Festival with friends, listened to great music, laughed our assess off, drank too much, and stayed up way too late.

There was a spectacular sunset one evening. They don’t call it big sky country for no reason.

For a few days, I felt light.

And yet.

Somewhere alongside the music, the laughter, and the anniversary celebrations, another companion made the trip with me.

Guilt.

Not big guilt.

Not dramatic guilt.

Just a quiet little voice talking very quietly beneath everything.

I wondered how my mom was doing.

Was she sleeping?

Was she happy?

Was she anxious?

Did she know she was loved?

Were the staff taking good care of her?

I thought about my dad.

Father’s Day was approaching, and I felt guilty not being with him.

I wanted him surrounded by love.

I hoped he might make the trip to see my sister in Idaho Falls, but he seemed hesitant. Understandably so. Leaving my mom, even for a night, feels complicated these days.

And that got me wondering about guilt itself.

What exactly is it for?

Sometimes guilt serves a purpose.

If I’ve acted in a way that doesn’t align with my values, guilt can point me back toward them.

It can help me repair, apologize, reconnect, and do better.

But this felt different.

I wasn’t neglecting my mom.

I wasn’t abandoning my dad.

I was celebrating life, live music, friends, and my marriage.

I wasn’t doing anything wrong.

And yet guilt showed up anyway.

I’ve started wondering whether guilt sometimes appears whenever love collides with the limits of what we can control.

Because Alzheimer’s has forced me to confront those limits over and over again.

I can’t make my mom well.

I can’t guarantee she’s happy every moment of every day.

I can’t carry my dad’s loneliness for him.

I can’t be in Montana and Utah at the same time.

I can love.

I can visit.

I can advocate.

I can show up.

But I cannot do the impossible.

Maybe that’s one of the unexpected lessons caregiving teaches us.

Not just about the people we’re caring for.

About ourselves.

Over the last several years I’ve spent a lot of time examining my patterns, my family stories, my baggage, my assumptions about responsibility, and the things I feel obligated to carry.

I’ve noticed something curious.

I rarely feel guilty for not taking care of myself.

But I often feel guilty when I do.

Why is that?

Why does a weekend away feel more suspect than exhaustion?

Why does joy sometimes require justification?

Why does guilt linger even when love is so present and strong?

I definitely don’t have answers.

I’m still trying to understand where guilt comes from and whether it’s serving me anymore.

What I know is this:

The sunset in Missoula was beautiful.

The music was life giving.

My husband and I celebrated 29 years together.

My mom was cared for.

My dad was loved.

And somehow guilt still found a tiny little seat at the table.

I’m curious.

How do you think about guilt?

Has caregiving changed your relationship with it?

When does guilt help you live closer to your values—and when does it simply ask you to carry more than is yours to hold?

I’d love to hear your thoughts.

And that probably tells you almost everything you need to know about dementia.

My dad and I hosted an anniversary party for my parents at the Wilmington Room on the 10th floor of The Legacy. It overlooks the Salt Lake Valley, and as the sun began to set, the mountains glowed outside the windows. The golden hour.

The room was full of my parents’ closest friends, people who have known them since high school and college. People who have witnessed more than fifty years of marriage, friendship, children, careers, triumphs, heartbreaks, and ordinary Tuesdays.

What struck me all evening was how much work he had put into making it happen.

He reserved the room. He invited the guests. He bought the beer and wine, packed the coolers with ice, picked up the flowers, coordinated the details, and helped make the whole thing come together. I ordered platters from Mediterranean Deli, but he carried the weight of hosting.

I was so proud of him.

This was a huge milestone.

Caregiving can make your world lonelier if you let it. Last night, my dad refused.

The room was filled with laughter, stories, and easy conversation that happens when people have known each other for decades.

And then there was my mom. Oh boy.

If you’ve followed this journey, you know she is pretty Dementia WTF these days. She can’t really form sentences anymore. She doesn’t consistently recognize people. Conversations are fragments and feelings rather than thoughts and stories.

But last night was beautiful.

She enjoyed herself.

You could see it.

She smiled. She listened. She wandered. She sat with old friends. She soaked up the energy in the room.

She may not have known exactly who everyone was, but she knew she was surrounded by people who loved her.

And maybe that’s enough.

At one point, we all gathered to share stories and raise a toast to my parents. There were tears. There was laughter. There were memories from decades ago that had everyone smiling.

Then I put on Harvest Moon by Neil Young.

Mom and Dad stood up and started dancing.

The room got very quiet.

People had tears in their eyes.

And then, because our family rarely stays sentimental for too long, the dance turned into a dance party.

Michael Jackson took over.

Everyone laughed.

Everyone danced.

Everyone celebrated.

The thing that struck me most was that two completely different truths existed in that room at the same time.

This disease is heartbreaking.

And this evening was wonderful.

Neither truth canceled out the other.

Earlier in the evening, several friends had quietly told me how hard it is to see Mom this way. I understand that feeling. I feel it too.

But last night we didn’t stay there.

We let in the joy.

We laughed with her instead of mourning what was missing.

We danced with her instead of focusing on what she could no longer remember.

We celebrated the life she has lived instead of mourning what dementia has taken away.

There were other moments that reminded me how many people quietly carry families like ours.

On my way to the party, I stopped at the liquor store to grab a few bottles of wine. The woman helping me was Roberta, one of Mom’s former caregivers at The Legacy.

I immediately gave her a hug.

There was a time when Mom had kicked her, punched her, and fought every attempt to help her change clothes. Dementia can be brutal that way.

A few months ago, I could see how exhausted Roberta was becoming. The work was wearing on her.

Last night she told me she had left The Legacy a couple of months ago and was finally starting to feel better. She looked rested. Healthier. Lighter.

That job is so hard.

I left feeling grateful all over again for the people who care for our loved ones every day.

Then there was sweet Nya, one of the staff members who stopped by during her break. I convinced her to grab a plate and eat with us. As we talked, she shared that she’s finishing her associate’s degree and preparing to apply to nursing school.

I loved hearing that.

Sometimes these jobs are stepping stones to incredible careers. Sometimes they’re the places where future nurses, doctors, and caregivers first learn what it means to care for another human being.

And then, at the end of the evening, after all the stories and dancing and hugs, Dad and I brought Mom back to her room.

With one of the staff member Judith’s help, we managed the nightly ritual of changing clothes.

Mom dos NOT like taking her clothes off.

There was definitely some negotiating.

Some redirecting.

Some laughter.

Just like earlier in the evening when I took Mom to the bathroom.

While pulling her pants back on, she suddenly launched into a strip-tease performance.

I laughed so hard I could barely stand up.

Because that’s the thing nobody tells you.

Sometimes dementia is devastating.

Sometimes it’s hilarious.

Often it’s both within the same five minutes.

After getting mom changed and teeth brushed, we got her settled into bed.

She climbed in awkwardly, unsure of exactly which angle made sense.

Dad and I laughed again.

Within seconds, she was asleep.

Peaceful.

Still.

Comfortable.

After an evening spent surrounded by people who loved her.

After dancing with her husband.

After hearing stories about her life.

After being celebrated.

Dad and I went back upstairs to finish cleaning up the room. We loaded coolers into his car, packed leftovers, hugged goodbye, and headed home.

I drove away with the biggest smile on my face.

Not because dementia disappeared for a night.

It didn’t.

Not because everything is okay.

It isn’t.

But because joy showed up anyway.

And maybe that’s the lesson I’m carrying with me this morning.

Joy doesn’t wait for the hard thing to end.

Joy arrives right in the middle of it.

Sometimes wearing a Harvest Moon soundtrack.

Sometimes surrounded by lifelong friends.

Sometimes tucked under a blanket after a long day.

And sometimes doing a strip tease in a memory care bathroom.

Last night, we let it in.

And I’m so grateful we did. 💖

P.S. Consider this your permission slip.

Permission granted to laugh. Permission granted to dance. Permission granted to celebrate.
Permission to enjoy a good day without feeling guilty about the hard ones.

What joy have you been denying yourself lately? Hit reply and let me know. We’d love to hear from you! 💛

Leave a comment

Go laugh.

Go notice the sunset.

Go drink the good wine.

Go sit on the porch.

The hard thing will still be there tomorrow.

After reading Cori’s story about laughter around the dining room table, I found myself thinking about something very different.

Not the joy I allowed, but the joy I missed.

Recently I created a graduation slideshow for my son, Brady.

That has meant digging through years of photos. Thousands of them. Hockey tournaments. Family vacations. Birthday parties. Ordinary Tuesday afternoons that somehow became memories.

I saw my son’s 17 years of life through pictures. From birth to present day.

I saw him grow from a tiny baby, when my father was still alive. There is one moment I remember completely and it shows my dad on the floor leaning over Brady, less than one year old, and they are both smiling! But more importantly it was one of the last times I remember my dad talking. He stopped talking a few years before he died!

Then I saw him heading off to school in his uniform at kindergarten!

Then I saw him change. The change I knew was happening but couldn’t fully see while I was living it. Looking at the photos, it unfolded right in front of me. I watched him slowly disappear. Not physically. Emotionally.

The smiles became harder to find. The light in his eyes dimmed. The pictures started showing a boy hiding behind his hair, looking down instead of into the camera.

Even though I lived through it, seeing it unfold photo after photo was heartbreaking.

I sat through all 17 years in one night because as I entered that painful period, I knew I couldn’t stop there.

So I kept going. I needed to see what came next.

Then I saw him come back.

Slowly at first.

A glimpse of a smile.

Eye contact.

A little more light.

And then one day, the unmistakable return of hope.

But something else unexpected happened as I looked through those years of pictures.

I started noticing myself in the pictures.

Not in the way most women do. Not, “Oh, I looked younger then.” Not, “I wish I still had that outfit.”

Something deeper.

I didn’t look like myself.

At first, I thought it was the weight gain. There was definitely that! But the longer I looked, the more I realized it wasn’t really about the weight.

It was in my eyes. My smile. My posture. The energy coming through the photograph. I looked tired. Not the kind of tired that comes from a bad night’s sleep. The kind of tired that settles into your bones when life asks more of you than you know how to give.

Those were the years my mom was declining. The years when dementia was slowly stealing pieces of her.

They were also the years when Brady was struggling the most. The years when every phone call could make my stomach drop. The years when I went to bed worried and woke up worried. The years when I wasn’t sure what the future would hold for either of them.

At the time, I didn’t realize how much it was affecting me. When you’re living it, you don’t always see it. You just keep going. You make the phone calls. You show up. You put one foot in front of the other. You handle the next crisis and then the next one after that. You tell yourself you’ll breathe when things settle down. You tell yourself you’ll rest later. You’ll take the trip later. You’ll find your way back to yourself later.

Looking at those photos now, I can see the cost.

Not because I was doing anything wrong or I should have tried harder. Not because I failed to appreciate the good moments.

The truth is, I was surviving. And survival takes a tremendous amount of energy.

What surprised me most wasn’t what I saw in the pictures. It was what I felt. Compassion. Not judgment. Compassion.

Because for the first time, I wasn’t looking at those photos through the eyes of the woman who expected herself to hold everything together. I was looking at them through the eyes of a woman who finally understood what she had been carrying.

I was losing my mom. I was terrified for my son. I was carrying more than I knew how to carry.

Of course I wasn’t skipping through fields of wildflowers or glowing and I wasn’t savoring every precious moment.

I was doing the best I could.

And I saw Cori’s story. Three generations sitting together. A haircut. A doll. Laughter around a dining room table. And I found myself wondering what might have been different if someone had handed me that permission years earlier.

Permission to laugh. Permission to enjoy the moment without wondering when the next shoe would drop. Permission to notice the rose. Permission to experience joy before everything was okay.

Because that’s the trap, isn’t it?

So many of us believe joy is something we’ll get back to once the hard thing is over.

After the diagnosis.

After the crisis.

After the caregiving.

After the fear.

After the grief.

But life doesn’t work that way.

The hard things and the beautiful things arrive together. They always have. The sunlight was there during those years. I know it was. The photos prove it. I just couldn’t always see it through the fog.

Looking back, I don’t think I missed all the joy.

I think I missed some of the permission.

So, if you’re in that season right now, I don’t want this to become one more thing you feel guilty about. I don’t want you to read this and think you should be making more memories or appreciating every moment. I simply want to offer you permission.

If a laugh comes, take it.

If a sunset catches your eye, stop and look.

If someone you love reaches for your hand, hold it.

If you find yourself laughing around a dining room table, let yourself laugh.

Not because the hard things aren’t real. But because they are. And because joy was never a betrayal. It was part of the survival all along.

💛

Nothing extraordinary happened.

And somehow, everything did.

Sophia cut my mom’s hair while I trimmed her nails. Mom sat holding her doll in her lap, completely absorbed in a conversation only she could understand.

At one point I looked up and caught Sophia’s eye.

She had that look.

You know the one.

Part confusion.
Part disbelief.
Part, “Are we really doing this right now?”

I started laughing.

Then Sophia started laughing.

Then somehow all three of us were laughing.

Not because dementia is funny.

Not because everything was okay.

Not because I wasn’t still carrying the sadness that comes with watching my mom disappear in slow motion.

We laughed because something undeniably beautiful was happening.

Three generations.

A grandmother.

A daughter.

A granddaughter.

Love moving forward even as memory moves backward.

For a moment, nobody was trying to fix anything.

Nobody was grieving what had been lost.

Nobody was worrying about what comes next.

We were simply there together, laughing.

And then something interesting happened.

That familiar little voice showed up.

The one many caregivers know all too well.

Don’t forget what’s happening.

This is sad.

You shouldn’t get too comfortable.

How can you be laughing when dementia is taking so much?

The voice wasn’t loud.

It rarely is.

But it was there.

For years, I think I listened to it.

I think many caregivers do.

We quietly convince ourselves that joy is somehow disloyal.

That if we laugh too hard, relax too much, enjoy ourselves too deeply, we’re not taking the situation seriously enough.

As if grief and love require us to remain solemn.

As if suffering proves our devotion.

But lately I’ve been wondering if we’ve gotten that backwards.

Later that day, I was walking my dog when I noticed a rose blooming in someone’s front yard.

Bright pink.

Completely open.

The kind of rose that stops you in your tracks.

I leaned in.

It smelled incredible.

Not faintly floral.

Not politely pleasant.

The kind of fragrance that seems almost manufactured.

The rose wasn’t blooming because circumstances were ideal.

It wasn’t waiting for the world to become less complicated.

It wasn’t checking to see whether everyone around it was okay first.

It was blooming because it was June.

Because that’s what roses do.

Standing there, I was reminded of something.

Maybe joy works the same way.

Maybe joy isn’t something we earn after we’ve suffered enough.

Maybe it isn’t a reward for getting through the hard part.

Maybe it isn’t something we have to justify.

Maybe joy is simply one of the ways we survive loving people through impossible things.

Not instead of grief.

Alongside it.

The truth is, my mom still has dementia.

The losses are still real.

The sadness still visits.

But so does laughter.

So does beauty.

So does a rose blooming on an ordinary afternoon.

This month our Dementia WTF gemstone is Sunstone, and the theme is Permission to Feel Joy Again.

Maybe that’s the invitation.

Not to ignore what’s hard.

Not to pretend everything is okay.

But to stop treating joy like a betrayal.

To let it arrive when it arrives.

To laugh when something is funny.

To notice the rose.

To take the walk.

To enjoy the moment before it passes.

After all, grief and joy were never enemies.

They’ve been sitting side by side all along.

And remember, never WTF alone.

💛

P.S. What's something bringing you joy this month? I'd love to hear in the comments!